• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Undiagnosed Club Support Group

Maya142

Moderator
Staff member
You could try some sort of activity in the water - some pools have aqua arthritis or pilates in the pool (called poolates sometimes).

Physical therapy also may help a lot - either in the water if that's available or not. Massage can really help too for fibromyalgia.
 
Hi friends, quick question - has anyone here been on antidepressants for pain?

I have this awful chronic throat pain/heartburn-like very intense pain that my doctor is considering giving me low-dose antidepressants to treat, to maybe take the edge off it while we figure out the underlying stomach stuff that's causing it. However, he's suggesting SSRIs where I have read that tricyclic antidepressants are more often used for pain. Anyone here had their pain helped by SSRIs? Or antidepressants in any form, and if so how did it work for you?

I woke up in the worst pain I've had for a while today and I'm going in for an appointment later on so I'm trying to figure out what to ask for. My brain is just mush because it hurts so darn much. Regular pain meds don't even touch it.
 

my little penguin

Moderator
Staff member
Tricyclics are used to treat abdominal pain (elavil etc..) in extremely low doses
Not what is used for true antidepressants
They tried elavil on Ds when he was very young for abdominal pain /migraines
It made his heart race
Then tried notatrpytaline sister drug
He basically was a sleepy zombie

Ssri are NOT used for pain
Cymbalta can be used for pain
It's is am SsNRI

https://www.rxlist.com/cymbalta-drug.htm#description

Realize any ssri or ssnri come with a suicide warning which can be very real
All ssri alter brain chemistry which regardless of why you are taking it
Can make you feel worse (for about a month ) before you feel better

Once you start any ssri getting off it (weaning ) is extremely difficult
Since you have altered the brain chemistry and receptors
Things like brain “zaps” trouble sleeping
Mood changes

If you have a true mental illness
Then yes ssri can work and help brain chemistry that is already off
Each ssri has different things it helps with some bettter some worse
But just for pain ...,.,
Very risky
 
Hi friends, quick question - has anyone here been on antidepressants for pain?

I have this awful chronic throat pain/heartburn-like very intense pain that my doctor is considering giving me low-dose antidepressants to treat, to maybe take the edge off it while we figure out the underlying stomach stuff that's causing it. However, he's suggesting SSRIs where I have read that tricyclic antidepressants are more often used for pain. Anyone here had their pain helped by SSRIs? Or antidepressants in any form, and if so how did it work for you?

I woke up in the worst pain I've had for a while today and I'm going in for an appointment later on so I'm trying to figure out what to ask for. My brain is just mush because it hurts so darn much. Regular pain meds don't even touch it.
The Effexor I am now using for depression and anxiety has helped somewhat with my fibromyalgia pain, so it might be of use for neuralgic pain. It's an SNRI so it works a little differently than SSRIs or tricyclics but has less side effects than TCAs. :)
 

Maya142

Moderator
Staff member
SNRIs like Cymbalta, Effexor (which tends to come with lots of GI side effects, so we have not tried it so far) are used for pain more often than SSRIs.

SSRIs, like Lexapro, Prozac, Celexa, Paxil - work well for anxiety and depression which come along with chronic pain very often. They are sometimes used for IBS pain, but studies really show that SNRIs are better for chronic pain.

SNRIs do come with more side effects in our experience. My daughters have tried Cymbalta and Savella so far. Cymbalta worked well for my older daughter's mood but didn't help her pain, but she wasn't on a high enough dose for pain anyway. However, coming off it was HELL. Severe nausea and it took months to taper off it.

However, it did work well for her mood.

My younger one has tried several SSRIs for anxiety and depression. Lexapro worked for a while but doesn't seem to work well anymore and we are contemplating one of the newer SNRIs (Fetzima or Pristiq). Zoloft did not help at all. She also tried Wellbutrin, which just made anxiety worse and did not help pain or anything.

We have also tried Elavil (made her very sleepy and out of it, but no help with pain or sleep) and Nortriptyline - fewer side effects, but no help with pain or sleep.

This is a good guide about IBS and antidepressants used - as well as other GI conditions such as visceral hypersensitivity.

https://www.med.unc.edu/ibs/files/2017/10/IBS-and-Antidepressants.pdf
 
SNRIs like Cymbalta, Effexor (which tends to come with lots of GI side effects, so we have not tried it so far) are used for pain more often than SSRIs.

SSRIs, like Lexapro, Prozac, Celexa, Paxil - work well for anxiety and depression which come along with chronic pain very often. They are sometimes used for IBS pain, but studies really show that SNRIs are better for chronic pain.

SNRIs do come with more side effects in our experience. My daughters have tried Cymbalta and Savella so far. Cymbalta worked well for my older daughter's mood but didn't help her pain, but she wasn't on a high enough dose for pain anyway. However, coming off it was HELL. Severe nausea and it took months to taper off it.

However, it did work well for her mood.

My younger one has tried several SSRIs for anxiety and depression. Lexapro worked for a while but doesn't seem to work well anymore and we are contemplating one of the newer SNRIs (Fetzima or Pristiq). Zoloft did not help at all. She also tried Wellbutrin, which just made anxiety worse and did not help pain or anything.

We have also tried Elavil (made her very sleepy and out of it, but no help with pain or sleep) and Nortriptyline - fewer side effects, but no help with pain or sleep.

This is a good guide about IBS and antidepressants used - as well as other GI conditions such as visceral hypersensitivity.

https://www.med.unc.edu/ibs/files/2017/10/IBS-and-Antidepressants.pdf
I hated Cymbalta because it made me incredibly moody - NOBODY wanted to be around me. I've never tried Savella. Effexor, the first time I tried it, caused mydriasis and made my eyes sore and caused an unusual phobia of pointy things because I felt like everything would poke me in the eye. However, I tried it again - albeit, reluctantly - and feel fine. I'm on 150mg and it has helped tremendously.

I've never tried TCAs or MAOIs - they've never been offered to me since I usually was already on 2 antidepressants when it was brought up. Wellbutrin worked for a while - several years in fact - but I noticed, over time, that my irritability and anxiety were both worsened. My psychiatrist suggested getting off it and I am much better on the Effexor only and a mood stabilizer. I have a personality disorder that causes depressive episodes and anxiety (newly diagnosed). Wellbutrin can be activating, similar to Prozac and Zoloft. I noticed Wellbutrin never did anything for my chronic pain. It was easy to taper off it, fortunately.

Pristiq was offered to me if the Effexor didn't work. I thought it was odd since it is made with the active metabolite of venlafaxine (it's called desvenlafaxine).

Tramadol, which works similar to an opioid (and is considered by some as an opioid), works as an antidepressant in some cases. Some chronic pain can be managed by Tramadol, but it doesn't work in all cases. I've heard it has been used for fibromyalgia, but with the opioid crisis in the USA, I've not found anyone who is willing to prescribe it.
 
Ohh thanks so much for your comprehensive feedback and sharing your experiences!

I had bad luck again today and ended up with a complete toolbag of a doctor (I never see the same one twice, which is really useless) so now they suddenly don't want to do anything to help me anymore. So annoyed. Was still offered the antidepressants though, because of course if they can't think of anything wrong with you you're depressed. They agree with me that I might have gastroparesis - but won't test for it. It honestly makes you feel crazy talking to them because they're not even calling me a hypochondriac or anything, they're saying I could very well be right, but they're just not going to do anything about it. :p

Amitriptyline was the one suggested for me, and if that doesn't work maybe Cymbalta. I might try it, haven't decided yet. A lot of the side effects would potentially worsen other conditions of mine (dry mouth/dry eye, constipation etc.) so I'm hesitant. I've always been very anti psychiatric meds at all. Since I don't need them for anxiety or depression (I do deal with those things, but it's not very severe) I feel like the risks and side effects have always been too great. But chronic pain is kicking my behind, so I might change my tune...

I'm gearing up to make a trip for health care. The shitty care locally has driven me to medical tourism :p The doctor I saw today (a young resident on exchange from another country, he was under 30 easy, never saw me before, spoke to me for 15 minutes) - before I left he crouched down in front of my chair, looked at me all serious, and told me I should just get used to living like this with chronic pain and not expect anything to be done for me beyond this.

A resident! Who has met me ONCE!!! Thought that was an appropriate thing to tell me. About pain I've really only had again at this level for the past month. I was doing better, it was farther between and shorter flares, and then it just came back. But no. I need to accept that this is my life now, apparently. According to the child doctor who read my chart and spoke to me for about 5 minutes. Alright then, sure pal :p
 

Maya142

Moderator
Staff member
Izzie, just FYI, tricyclic antidepressants makes Gastroparesis worse. They slow down gastric emptying. So that may not be a good choice for you and that is something you need to discuss with your doctor (preferably a pain management doctor or GI that knows these drugs!!!).

Since you may have gastric emptying issues, it may be better to think about SSRIs or SNRIs. There's not a whole lot of good evidence for pain relief with SSRIs but there are some studies.

There is a lot more evidence for SNRIs but in our experience, they come with more side effects (more GI side effects, more dizziness etc.).

The other option would be an anti-convulsant like Gabapentin or Lyrica. Those have been used a lot for pain.

Tramadol is a weak opioid but also has some anti-depressant like qualities. Some people do very well on it. However, because of the current opioid epidemic in the US, it is being prescribed less and less. My girls both did very well on it for pain but again, it does slow down gastric emptying like any other opioid.

It is used a lot for inflammatory arthritis pain and sometimes for fibromyalgia. Depends on the doctor, honestly. My older daughter has used Tramadol on and off for years, never had a problem coming off it, but there is the potential for addiction.

She does not have significant GI issues though, and it never bothered her stomach. She will use it for flares and then just reduce it over a couple of days and stop. She also uses it if she's had a really bad day for example.

But again, her pain issues are very different - arthritis vs. GI issues.
 

Maya142

Moderator
Staff member
MissLeopard83, we have been told Pristiq is a better option than Effexor because it has fewer side effects. Haven't had the courage to try it for my daughter since she has so many GI issues - severe Gastroparesis, Crohn's, GERD etc.
 
Thanks for that info, Maya! The fact that I have motility issues is one of the major things holding me back from taking them. I also truly believe that the problems I have are largely mechanical in nature (as in, my wrap surgery is just not tight enough) - and it pains me to take medication for something that is probably surgically fixable in the right hands... Understand not wanting to risk giving your daughter something that might make other issues worse. That's a concern of mine as well with new medications.

Feeling suuuuper frustrated this morning. My self-confidence always takes a hit when I see a bad doctor. I was so pleased with the care I received from their colleague but since I never see the same doctor twice there's just no consistency of care whatsoever. Oh well, just keep on keeping on, I guess.

No more really bad pain flares since yesterday morning though, so that's really good. Living off really really plain stuff again and it does help. Hope the rest of you are well!
 

my little penguin

Moderator
Staff member
Izzie are you stuck woth GP ???
Anyway to get In woth a specialist ?

Sometimes a specialist in a minor area (in Ds case dermatologist of all people )
Put the pieces together and pushed the other docs to do what was needed
Going you get there soon
 
Izzie are you stuck woth GP ???
Anyway to get In woth a specialist ?

Sometimes a specialist in a minor area (in Ds case dermatologist of all people )
Put the pieces together and pushed the other docs to do what was needed
Going you get there soon
I used to be but as of late I've been stuck with temporary GI specialists. Basically young residents who take over for the "real" GIs over the summer. Not having one consistent doctor to see is really annoying, and it takes forever to get anything done...

You're very right, it really only takes one consistently good doctor to get things done, sometimes. I've yet to find one :ylol2:
 
Izzie:

I am so sorry to hear you are back to square one for the umpteenth time. And I absolutely cannot believe what that resident said to you. In my opinion it was extremely sexist: a woman with GI and pain issues that are difficult to diagnose, well, it must be in her head. I am so sorry.

One note about the tricyclics: Amitriptyline can make your mouth extremely dry. I was on high doses for migraine prevention before realizing it just wasn’t working (I have tried every drug on the market for migraines except for the ones that were just approved but will be asking my neurologist about taking one of them. I don’t know if nortriptyline dries the mucous membranes as much but I would still be careful.

On a positive note for me, after a wait of nine months I finally saw my new GI today (my previous one semi-retired) and she was great. We’re doing an MRE to get a baseline of what the crohn’s looks like and I’ll finally stop taking Entocort. She would also like to get to the bottom of some of my other unpleasant symptoms (pain and severe diarrhea when my clear norm is constipation) and said that she likes very much to get to the bottom of things (no pun intended) rather than just have patients accept a lower quality of life as the norm. I really liked my previous GI but he was rather hands off unless I got so sick I had to be hospitalized and I know he left me on Entocort for way too long.

Where are you planning to go to get more consistent (and better) medical care?
 
So glad to hear you like your new GI, that's so important that she focuses on quality of life as well. My doctors very much do not do that :p

I'm actually going to file a complaint. It's not appropriate for a doctor to behave that way towards a patient who isn't even his patient, after not even 20 minutes of conversation and without even having tried any treatment. I was alone as well which I think was a factor. I usually bring family. If I have male family members along, it's surprising how much more helpful and accommodating they become... It's frightening really how sexist medical care can be.

And yeah, I'm really not feeling the antidepressants. My recurring symptoms only came back full-force with cough, sore throat, food sensitivity etc. about a month ago. And they are very classic reflux symptoms. I don't think it's the right course of treatment. If it were I might be okay with possible side effects, but really it's just not. I tried acid suppressants again and while they gave me too severe of side effects to continue, my symptoms essentially disappeared - which does suggest regular old reflux...

And as for my plan, well... I'm trying to get in with another GI through private practice. It's taken forever but they have appointments available now. And then if the conclusion is that I need a surgeon's opinion on it I'm going to travel to Cleveland Clinic. I have family in the US so it's not a huge deal. Just more of a hassle and expensive... Surgeons here are really stuck in the 90s. My open surgery would've been performed laparoscopically anywhere else where they've actually followed along with medical scientific discovery :p
 

cmack

Moderator
Staff member
:yfaint:I feel the same way about some of my surgeries... Perhaps better performed elsewhere... With a proper specialist... You have my support. It will get better, sorry about Dr. Doogie Howser on crack!:ghug:
 
:yfaint:I feel the same way about some of my surgeries... Perhaps better performed elsewhere... With a proper specialist... You have my support. It will get better, sorry about Dr. Doogie Howser on crack!:ghug:
Haha thanks :ylol:

I'm confident things will get better once I actually find decent care as well. Nothing I'm facing seems unsolvable to me, I just keep having to argue with doctors. I do believe going abroad should have things happening faster as well. Here, it's one test - wait three months - maybe another test - wait three months. Extremely slow.
 
I have good news! I saw my rheumy yesterday and she confirmed that all the additional tests were normal as well as the x-rays. She is sticking with the original diagnosis of "undifferentiated connective tissue disease" and wants to continue intermittent blood testing to monitor my condition. She and I are hoping it doesn't turn into full-blown autoimmune disease but it's possible it could happen. She agreed to let me try diclofenac (Voltaren) and wants to do regular blood tests every 3 months to monitor my liver/kidneys. I'm not to take it every day, so I'll use it interchangeably with the Tylenol Arthritis. I tried it for the first time yesterday and it is definitely stronger than Advil. I can tell it's working, which is wonderful! I went with my mom on a long bike ride since I'm really trying to get back into shape now that I'm feeling much better (depression has finally lifted, thank GOD!). I'm very sore today but I'm grateful I actually felt well enough to go. :)
 

cmack

Moderator
Staff member
Good news is right! That's nice that you are finally having some good luck, MissLeopard. I hope you can start doing more and more fun activities without all the pain. I love bike rides. :)
 

Maya142

Moderator
Staff member
Glad you finally have some sort of answer MissLeopard83. That is great that the x-rays and bloodwork don't show RA or AS or anything inflammatory/autoimmune.

Hopefully your symptoms won't turn into anything more and can just be controlled by NSAIDs. Did she decide to keep you on Plaquenil? Sometimes they do that if they're worried about SLE developing.

Glad Voltaren is working for you!! What a long journey - I hope things will be nice and boring from now on!
 
Glad you finally have some sort of answer MissLeopard83. That is great that the x-rays and bloodwork don't show RA or AS or anything inflammatory/autoimmune.

Hopefully your symptoms won't turn into anything more and can just be controlled by NSAIDs. Did she decide to keep you on Plaquenil? Sometimes they do that if they're worried about SLE developing.

Glad Voltaren is working for you!! What a long journey - I hope things will be nice and boring from now on!
Yep, she kept me on Plaquenil. I only take 200 mg at night and that's it. If I feel like I'm in a flare, I increase it to twice a day. The Voltaren works, but I think it's giving me a rash, unfortunately! I'm going to stop using it for a few days and see if it goes away. It really sucks, but she told me it could happen and to be on the lookout.
 
Hello,

I’ve made a post of my story and it’s still happening. They’ve ran every test to check whether I have IBD and everything came back negative, yet I have very serious intestinal issues even deemed exceptional for IBS.

Recently I’ve started having extra intestinal symptoms that look like IBD or at least immune : a not yet diagnosed hepatitis, psoriasis, episcleritis, arthritis, hiddradenitis suppurativa, asthma, anemia, erythema nodosum, several string like mouth ulcers...

They’re finding me a lot of diseases but the thing I suffer the most from is my gastrointestinal issues yet they seem unable of diagnosing it. It’s apparently IBS, but rarely an IBS has been found to be associated with the other diseases, to be 24/24 365 days a year, to be associated with Cdiff and to now cause specks of blood in the stools and fever, and 10+ BM a day unresponsive to anti-diarrheal. Moreover doctor did a trial and twice the symptoms have disappeared after prolonged corticosteroids treatment,

Doctors don’t want to run anymore tests on me but after reading on the web, I’m getting always more certain it’s IBD or another autoimmune condition of the bowel.

I need help.
 
Did you have the MRI (or MRE if it’s done with contrast)? If not, they still haven’t visualized most if not all of your small bowel. IBS definitely doesn’t cause blood in stools and you have a host of extra-intestinal problems that sound like crohn’s.
 
Hello everyone,
So... things have kind of taken a turn for the horrible, for me. I suddenly can't breathe when I eat. Or after I eat. For hours. I CAN breathe, I don't pass out or anything, but it takes considerable effort. Probably something to do with the diaphragm from my hiatus hernia surgery. Something is very very wrong. And my esophagus cramps up too.

In a desperate attempt to fix it after the ER was completely useless as always, I took some Prilosec. And promptly developed the horrible no saliva issue I've struggled with before. So hey at least I got my hunch that it had to do with the meds confirmed I guess...

But so here I am. Can't eat. Literally cannot eat at all, or I spend 5+ hours after gasping for air. Can just barely drink water, it causes similar issues but less severe. ER just did an ECG and made sure I wasn't actively dying but other than that nothing. I honestly feel like I might not survive this with the lack of actual medical care. They won't DO anything.

Two months until my trip to the US for care. Not sure how I'm going to survive until then if I can't eat anything to be honest...

Feeling very down today. And angry at doctors.
 
Hi Izzie:

Did the doctors find an esophageal stricture at all? Do you sit in a particular position when you are gasping for air? Did the ECG show any inflammation at all? Did they give you a written evaluation? Did they give you oral steroids or anything? Can you feel your diaphragm doing anything different? Is there any way you can get a message to your surgeon? The ER should have kept you in since you can’t eat and can barely drink. How much can you drink? Enough to stay hydrated? Does the hospital think it’s “just anxiety” since they apparently won’t look hard enough for a physical reason? Is the ER staff even competent? They certainly don’t sound like it. I am very concerned because I know you don’t exaggerate your symptoms at all. Have they biopsied your esophagus before?

I know I’m asking tons of questions and I’m sorry. But you can’t survive on water alone and spend most of your day struggling to breathe. I had bronchitis last January and woke up coughing in the middle of the night and literally could not breathe. I thought I might just pass out and hit the floor (I was sitting on my bed) and that would stop the whole cycle, but I didn’t. I was able to calm myself down enough to get a little air in but I then stayed sitting up for the rest of the night. I ended up going to the ER and they did a nebulozer treatment, gave me steroids and an inhaler and sent me home. The steroids and inhaler saved me. I cannot believe they sent you home in your current condition. If you can’t stay hydrated go back and refuse to leave. Easier said than done, I know. Is there a different hospital you can go to that might take you more seriously?

Wish I could do more to help you.

Augusta
 
Hi Izzie:

Did the doctors find an esophageal stricture at all? Do you sit in a particular position when you are gasping for air? Did the ECG show any inflammation at all? Did they give you a written evaluation? Did they give you oral steroids or anything? Can you feel your diaphragm doing anything different? Is there any way you can get a message to your surgeon? The ER should have kept you in since you can’t eat and can barely drink. How much can you drink? Enough to stay hydrated? Does the hospital think it’s “just anxiety” since they apparently won’t look hard enough for a physical reason? Is the ER staff even competent? They certainly don’t sound like it. I am very concerned because I know you don’t exaggerate your symptoms at all. Have they biopsied your esophagus before?

I know I’m asking tons of questions and I’m sorry. But you can’t survive on water alone and spend most of your day struggling to breathe. I had bronchitis last January and woke up coughing in the middle of the night and literally could not breathe. I thought I might just pass out and hit the floor (I was sitting on my bed) and that would stop the whole cycle, but I didn’t. I was able to calm myself down enough to get a little air in but I then stayed sitting up for the rest of the night. I ended up going to the ER and they did a nebulozer treatment, gave me steroids and an inhaler and sent me home. The steroids and inhaler saved me. I cannot believe they sent you home in your current condition. If you can’t stay hydrated go back and refuse to leave. Easier said than done, I know. Is there a different hospital you can go to that might take you more seriously?

Wish I could do more to help you.

Augusta
ECG as in electrocardiogram, so it was just a heart checkup so I wasn't like, actively dying. It was fine. As for position it does seem to get worse when I'm a bit hunched over, but it really only starts when I swallow something. When I get up in the morning, I'm fine. Water sets me off but only for a short while, so I'm able to stay hydrated kind of okay I think. The Prilosec DID help, so I'm inclined to believe this is acid-related and surgery-related somehow. My diaphragm does feel weird. Like, "loose" and floppy. I've told my doctors this since my reflux symptoms came back. They don't really seem to take it seriously. With the breathing issue it feels like it's just not pulling my lungs down far enough, if that makes sense. It's similar to air hunger, but feels more "real". Not sure how to explain. Was getting adequate oxygen according to that finger thingie they put on you, but it definitely takes effort and I'm all sore in my ribcage area today from having to work so hard at it.

Only got to see a first-year resident in the ER who frankly was completely useless, awkward and incompetent. Didn't even realize what my surgery had been for even though I explained twice. Wouldn't give me anything. I even asked for a sedative or sleeping pill or anti-spasmodic or something that might help or so I could at least stop feeling so panicked (not being able to breathe is SCARY) but he said they don't prescribe sedatives in the ER ever (???) and he didn't think I was really having spasms (which I was, I get esophageal spasms with it as well). So. Ended up just not eating or drinking for about 6 hours and it slowly faded away and I was able to sleep. Am doing a bit better today after that Prilosec, can at least drink water, though I clearly can't continue taking it because I'm getting dryness and blisters in my throat from it again today as well... My lips are cracked and bleeding and for some reason this happens with PPIs for me.

I'm not too worried about my breathing since I can just not eat and it's fine, but clearly this is not a situation I can just... be in :p I'll survive the weekend sure, but I literally cannot eat and probably am not drinking optimally either, so I'm not sure what the heck to do :shifty-t: Will get in touch with my GI clinic Monday when they open, but yeah pretty much the ER seemed to assume I was anxious. Which I guess I was a little bit because I couldn't BREATHE, but I wasn't like... panicky, really. Just reasonably concerned considering the situation. I was pushy for once, honestly, and my mother was there too near-tears worried about them sending me home in that condition, but they wouldn't budge. At least my motility specialist at the GI clinic understands the problem and has never not believed me, but the ER wouldn't even send down a GI consult, so it was a bust. My specialist is on vacation until sometime at the end of next week too, so..

Other than a regular abdominal palpation exam they did nothing at all in regards to my esophagus/stomach. Just the ECG and a basic blood count.

I'm frustrated. My mom wanted to go to some other walk-in GP clinic last night but I was so fed up I wouldn't go. I'm too fed up to even engage with doctors at this point, it's just a waste of energy and time. They don't get it. My motility specialist I will see though because she has knowledge enough to understand that this is really happening, and has usually been helpful. She's the only such specialist available around here though so she's always pretty booked. My surgeon is unavailable to me as I'm no longer a patient there. And I hate that clinic so much I never want to go back anyway. I know my surgeon will be back from vacation in two weeks, so I might email him to see if he has any ideas, but I'd rather not go back in to clinic unless I'm seeing him personally, which I likely won't be able to.

ETA: Also had an unsually low BP for me, I think it was 95/something, but they didn't care about that. Have taken my BP with my family's at-home BP cuff too and it's been as low as 85/50. Which doesn't seem normal to me. Which I told them, but they dismissed it as being due to my anemia. Which I guess it could be, but still. It's almost funny how useless they are.
 
Sorry I misunderstood, Izzie. I cannot believe that did no examination of your throat and esophagus at all, just to see if something was up with your airway. Far too many doctors see only what they choose to see, not what actually exists. OF COURSE you were panicked: you couldn’t breathe! The doctor should have taken your history and if he didn’t understand what operation you were tallying about he should have gotten the attending physician who would have. I hate the ER too and on,y go when (like you), I think I won’t survive if I don’t go.

Do you notice your chest muscles move more when you breathe (it’s called pectoral breathing)? If your diaphragm isn’t functioning properly (which could also be an issue with the frenic nerve which runs down the right side of your neck) then your pectoral muscles take over. It looks pretty strange when you see someone doing it but it’s not by choice.

I hope your GI clinic will be able to help you tomorrow. Please let us know how you get through the night.
 
Sorry I misunderstood, Izzie. I cannot believe that did no examination of your throat and esophagus at all, just to see if something was up with your airway. Far too many doctors see only what they choose to see, not what actually exists. OF COURSE you were panicked: you couldn’t breathe! The doctor should have taken your history and if he didn’t understand what operation you were tallying about he should have gotten the attending physician who would have. I hate the ER too and on,y go when (like you), I think I won’t survive if I don’t go.

Do you notice your chest muscles move more when you breathe (it’s called pectoral breathing)? If your diaphragm isn’t functioning properly (which could also be an issue with the frenic nerve which runs down the right side of your neck) then your pectoral muscles take over. It looks pretty strange when you see someone doing it but it’s not by choice.

I hope your GI clinic will be able to help you tomorrow. Please let us know how you get through the night.
Kind of, yeah. My mother kept commenting on me "moving weird" when breathing.

And the shitty doctor actually did go away to ask his attending something, but he came back and just said he needed to ask some control questions to make sure I didn't have a clot in my lungs. The "control questions" was basically just "have you ever had a blood clot?" and "has anyone in your family had a blood clot?" And then the kicker "have you had surgery recently?" and I was like... Dude I just spent 5 minutes telling you about the surgery I had sort of recently.

I'm kind of convinced it has something to do with acid, which sounds weird but like... I also get tachycardia when I eat GERD triggers. And antacids seem to help somewhat even with this breathing thing. Not sure if it could be vagus nerve irritation or something.

The ER is a useless place, I definitely wouldn't go if I didn't have to. Even with this issue, my mom heard my weird breathing over the phone and came to my house and insisted we go. I really didn't want to because I have had such useless experiences with them in the past. It's also the exact ER where my father passed away a few years ago, which was my first time there, so it's even less my favorite place to go for that reason. Every time I step in the door I remember being there for the first time with his wife and being led off to see my dad's body.

I do feel a bit better today but that's probably mostly because I haven't eaten. Made myself drink a nutritional shake before and it did set me off again a bit, but took a bunch of antacids and that settled it down, strangely enough.

No clue what this body of mine is up to lately :p

Thanks for your advice and input Jabee, you're always so smart about this stuff. I'll be sure to come on here and whine some more once I've spoken to someone who isn't a first-year resident :biggrin:
 
I honestly think that the problem with health care here is the joint charting. Anywhere I go IN THE COUNTRY they have access to my full chart. Which should be great. Only if you've had ONE single idiot doctor flag you as an anxiety patient, you're kind of screwed everywhere you to.

I don't even have an anxiety diagnosis, I'm literally the calmest person I know, even when I can't breathe I'm sitting around chilling more than anything. But if you meet one doctor who is like "oh a young woman with an issue I can't explain, must be anxiety" and they put that in your chart - every subsequent doctor is going to see that and be like oh she's one of those. It's SO frustrating.
 
Well, a small update: I've spent my whole damn day gasping for air while trying to get a hold of someone who can schedule my damn iron infusion. Have had 0 luck. First they connected me to the eating disorders unit. I called back and said I got the wrong number and to please put me through to the right place. Got connected to the CHIEF of SURGERY, who was very confused as to why I was trying to book an iron infusion with him. Very awkward. So I called the GP clinic who referred me to get the infusion. Got a number from them. Wasn't even a real number, didn't go anywhere. Didn't even have enough digits, as it turned out. So called back. They can't answer me today, phone lines are full. So now I've emailed. Hopefully they'll get back to me. At some point.

I swear health care in this country is broken. It'd be funny if it didn't affect people who are horribly sick and in need of help.

ETA: ANOTHER UPDATE!! There's this one nurse at GI clinic who is a freaking angel in human disguise. I love her. She basically pulled a doctor out of thin air who was very sympathetic, said that other patients of his with similar issues have been in "complete panic" because nerve issues around the diaphragm (which he thinks is what's happening either due to surgery failure or motility disorder) makes you feel like you're dying. So they sent of a rapid referral for a barium swallow. Should get an appointment within a week, I hope. They were going to do an EDG first thing tomorrow but since I don't respond to sedatives at all (and when I do I apparently get violent and then don't remember), they decided on the barium swallow instead.

Doctor thinks my surgery has failed, or that my motility disorder has gotten so bad that food is getting stuck and ballooning out in the esophagus and pressing on all sorts of nerves and organs in my chest. If it's the latter, we might be looking at complete liquid diet or a feeding tube. But we'll see, I'm just happy someone listened finally.
 
Last edited:
If anyone in here has ever had a vocal cord spasm oh boy do I feel for you. Ended up in the ER again yesterday (I hate that place) because I just... couldn't breathe suddenly. My throat would just close up instantly for like 30 sek - a full minute. Saw an ENT and had the laryngoscopy and stuff and apparently I had a vocal cord spasm. Also a throat full of acid erosion.

Barium swallow the other day also showed SEVERE swallowing issues and reflux.

At least the "evidence" that I'm right and my reflux has returned is racking up. So fed up right now.
 

cmack

Moderator
Staff member
Wow! I'm so sorry that you are dealing with this, Izzie. That sounds like a scary situation with having the vocal cord spasm. I really feel for you bud. I have been away due to illness from all the smoke here and also major computer issues. I'm sorry I missed so much. You have my support.
 
Wow! I'm so sorry that you are dealing with this, Izzie. That sounds like a scary situation with having the vocal cord spasm. I really feel for you bud. I have been away due to illness from all the smoke here and also major computer issues. I'm sorry I missed so much. You have my support.
I saw in the other thread about the wildfires! Hope you and yours are safe. We had wildfires around here this year too, it can be so stressful not to mention physically debilitating and isolating. Hope it eases up for you soon!

And yeah it was very scary. Only happened the once, though, so I'm grateful for that at least. Having a complete shit time in life currently but things always change so here's hoping it's for the better soon. Trying to figure out how I'm going to manage classes which start soon. I had decided to finally start school again now after surgery but of course now I'm back at square one with health stuff so I'm trying to just push through and do school anyway because god knows when I'll actually feel healthy enough to if I wait.
 

my little penguin

Moderator
Staff member
Izzie glad you have evidence
Are they going to do anything for you?
Vocal cord dysfunction can be treated
My non ibd kiddo had it
Can be very scary
Speech therapist can work with you on specific exercise to retrain the vocal cords
https://my.clevelandclinic.org/health/diseases/17623-vocal-cord-dysfunction

https://azsneeze.com/vocal-cord-dysfunction-breathing-exercises/

https://emedicine.medscape.com/article/137782-treatment#d7
Hugs
Thanks so much for the resources. Still in early stages and health care here is so slow. Since mine is probably caused by reflux I'm hoping the vocal cord issue will get better once that's treated. But we'll see, I will definitely ask to see a speech therapist!
 
I just swallowed a sulfasalazine tablet. I have not had biopsy verification yet, but the ED docs are so sure of what is going on, that they started me on the Rx NOW rather than waiting for an appt w/GI.

Oh, btw, Hi! It's been a long time since I've been around, but I see a lot of familiar names!

I wanted to jump in again now that I'm back on this train.

So...I bet you want to know what led the ED docs to this?

Two weeks ago (August 6), I had some pretty intense RLQ pain (kinda typical for me) but I also had mouth ulcers (canker sores) AND swollen and sore joints -- when I called my GP's office, they sent me to the ED. The doc I saw that day (a resident) was a bit of an arse. He treated me like a druggie, mentioning how often I come in (I always go to the same ED) for the same issues, to the RN, and suggesting I was malingering. I hadn't even asked for pain meds! So, then, he pushes around on my tummy...and when the tender areas are low, he jumps to female issues. Does a pelvic exam, and swabs for a host of STDs. Meanwhile, the supervising doc has ordered a CT for me. Results of the CT show colitis of the ascending, descending, and sigmoid colon as well as what is likely adenomyomatosis of the gallbladder. Arse comes back to tell me my girlie bits are fine, and that I likely have a tummy virus and I should be fine in 7-10 days, and sends me off.

One week later, things still aren't right. By then, the pain was basically all over my tummy. So I go to my GP on August 13, who places an order for an u/s of my gallbladder, and we talk about what else could be going on. She was leaning toward autoimmune issues but didn't want to take a big step in that direction just yet, so sent me home with a list of reasons to go back to the ED and/or see her again.

That brings us to today, August 19, things have been getting worse, not better. Throughout these 2 weeks, I've had alternating watery diarrhea for days, followed by a day or two of mushy/nearly formed stools, then back to the watery d. Last night, around midnight, I started having intense pain in the middle upper part of my tummy, and it just kept on going. This morning, I thought I'd take a nice warm shower and feel better - instead, I felt worse and dh took me back to the ED.

This is where things get better, tho!! This time, the two drs seeing me came in together, and coordinated all the way through. They took a much more detailed history, and asked specifically about *any* relatives who had IBD (I have cousin's w/Crohns). Then they took some blood for basic labs, etc. Gave me a bit of morphine and some zofran for nausea. A bit later, they wanted to try the "GI cocktail" (gross, gooey, viscous lidocaine mixed with milk of magnesia). Not even 10 minutes after downing that, nausea got much worse, and the pain intensified. Blood tests were coming back around that time, too. Most everything looked ok, just a bit low on potassium. RN comes in with the HUGE potassium pills, and they wait to see if I can keep them down (I did). Then, the docs come back in and pretty much say that they believe, based on everything that they have read in my files (sooo many visits for abdominal issues! not to mention that I have hashimoto's, and sjogren's, and eosinophilic esophagitis...) that this is an IBD issue. Then they write an Rx for sulfasalazine, a referral to GI with a biggish note, a nice note to my GP, and send me home saying they are sorry that they weren't able to "fix" me today.

Whew!!

I had nearly given up on ever being truly treated for all my belly inflammation and now this!
 

my little penguin

Moderator
Staff member
Glad someone is finally listening and your going to a GI
Sulfanizine works really well for UC since it treats the top layer of the intestine
But not recommended as a monotherapy for Crohns
Since Crohns affects full thickness of the intestine

Have you seen a GI before ?

What about a rheumatologist given the swollen joints and mouth sores ?

Hope you get in soon
 

cmack

Moderator
Staff member
Hi Honey,

What a typical gong show! That's terrible that you were given swabs for all those STD's. I'm very proud of you for not getting mean about that one... or did you?! oops! Don't tell me if you did give someone a butt kicking, cause then I'm in on it. ;) I'm sorry to hear of all the trouble you are having, Honey. You are a really nice person and you can come here to talk to me any time. Hugs.
 
Ah, thanks MLP, good to know about sulfasalazine!

Yes, I have seen GIs before (uh, maybe 3 by this point?). Have had that many colonoscopies, too, which have only ever shown ick from recovering from C. Diff (once) and my cecal diverticulum. I'm not sure if the GI working with me on the EoE will look into this, or refer me to another one w/in his group. Oh! And, the ED docs told me, and even made a note, that they suggest a pill cam -- I doubt insurance will cover it until I have other stuff done first (like another endo- and colonoscopy)-- but I guess they think I may have been undiagnosed because no one has looked at my small intestine (well, a peek at the top and bottom, I guess).

Yup, have a rheumatologist, too! He is the only doc I see that isn't affiliated w/the hospital, tho (I was diagnosed w/Sjogren's based on Schermer test and other clinical stuff, plus an abnormal result on the B&L "Sjo" test -- but the rheums at the hospital wouldn't accept me into their practice because my ANA wasn't in the right range for them). He has had me on Plaquenil before, but I get fine symptom relief most of the time w/Rx eye drops, Evozac for saliva, and the occasional tramadol if my joints are really bad, so we stopped the Plaquenil since it can cause vision issues down the line.
 
Oh, cmack, the thought of being mean was definitely there! I was more annoyed that he put no importance on the inflammation on the CT, and just wanted me to follow up with the lab since some of the STD tests take a couple of days!!
 

Maya142

Moderator
Staff member
My worry would be that Sulfasalazine will mask test results. To be diagnosed with IBD, you will need a colonoscopy. Taking SSZ before it may make it look better than it should.

I do understand wanting to be treated ASAP. But in the long run, having the official diagnosis will help you more.

Same with rheumatology - you should really see them before you start any medication. If you have a form of SpA, it may change your treatment for both diseases.

Sulfasalazine is a pretty mild med, but I would hate for it to mask any inflammation that is there. You've waited SO long for a dx, I would just focus on getting one by a GI. The CT scan results showing colitis will definitely help, but scopes are the gold standard for diagnosing IBD.

Izzie - has anyone discussed a feeding tube with you? If you can't eat because of reflux/trouble swallowing and the breathing issue/vocal cord dysfunction, a feeding tube could really help.

Really sorry things have been so tough - hang in there!!
 

Maya142

Moderator
Staff member
I posted before I saw your additional messages - definitely ask for a pillcam, after the scopes! There are plenty of people who have Crohn's in their small bowel where scopes can't reach.

CCFA has a good explanation of the kinds of arthritis that affect people with IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/emr/arthritiscomplications.pdf

Peripheral arthritis is generally treated with Sulfasalazine or MTX as a first-line treatment. If that fails, then it's on to biologics.

Axial arthritis is different - SSZ and MTX do NOT work for arthritis in the SI joint (sacroiliitis) or spine. So the treatment options are NSAIDs or a biologic.

Spondyloarthritis, like IBD, can cause damage in the long-term - just to the joints and not the gut. But that is equally miserable (my daughter just had three surgeries within a year to fix various joints) and needs to be treated.
 
Izzie!! What in the world?! I can’t even imagine what you’re going through. You try SO hard to get better, and everything just seems to make you even worse. Sometimes my breathing gets kind of weird where it feels like I have to manually breathe.....like my body forgot how and can’t do it automatically anymore. I hate that feeling, and it’s scary, but it’s nothing compared to what you’re experiencing. That must be terrifying. And then the fact that some doctors still don’t take you and your symptoms seriously....ugh!

I haven’t posted in a while because I haven’t really had anything to say, but I have still been reading when I get a chance.
 

my little penguin

Moderator
Staff member
Word if warning
Ds had a small bowel follow through
3 months prior to Crohns dx
It showed nothing
He also has slow gut transit
I maxed out on X-rays waiting for the barium to go through
They never found his TI

Fast forward three month
Colonoscopy shows Crohns
So MRE was ordered
It showed thickening of the TI
I don’t trust sbft
 
Hi Everyone!

I am in the undiagnosed club and have been for 2 years now. Being this sick for 2 years is so tiring, so I’m hoping some of you have some insight for me. I’m 23 years old and have been having pretty bad symptoms for a little over 2 years now. I have always had a weak stomach as a kid but it tapered off as I got older.
In April 2016, I got really sick with what was thought to be a stomach virus. I was throwing up bile, was going to the bathroom all day, and had bad urgency issues. While it was horrible, it only lasted 2 days. Fast forward to June 2016, I started getting diarrhea...at first I was going about 4-5 times a day. But after a while, it got worse and I was going 8-10 times a day. It wasn’t always watery but it was usually very soft. It was so hard for me to go to school and work going to the bathroom this much, so that’s when I started taking Imodium. The Imodium wasn’t really helping and I didn’t know what else to do.
Then I started getting stomach cramps almost every time I ate. I would eat something, the cramps would come, and I would immediately have to go to the bathroom. Before I knew it, I had lost 15 pounds in only a couple of months. I was getting worried because every food I thought was safe, began giving me a problem...even just white rice. I was losing my appetite and slowly began getting scared to eat. I am still to this day scared to eat out with friends because I have to go to the bathroom almost every time...unless I don’t eat. I also began feeling tired all the time and completely drained. I had a few episodes where I would get super dizzy, weak, faint, pale and tired. I would have horrible stomach cramps and would have to lay down until it passed. It would only last for a few hours...the most it ever lasted was a day...but it has happened multiple times. On a few occasions, I also threw up after eating. It didn’t happen often, but enough that it was noticeable. So I decided to make an appointment with my GP who immediately referred me to a gastroenterologist.
At my first appointment I went over my symptoms and my doctor immediately scheduled a colonoscopy because he thought I had Crohn’s disease or Ulcerative Colitis, and a blood test for celiac’s disease. At this point my weight loss was getting worse and I had lost a total of 30 pounds. My colonoscopy plus biopsies and blood test came back completely normal, so my GI said I had IBS, gave me a prescription for Imodium and sent me on my way. I went back because it wasn’t helping, so he switched me to Viberzi. After that medicine failed, I was losing hope. I also tried Bentyl, and hyosciamine, which did not work out for me. They made the cramps worse, and made me feel dizzy, and out of it. I also had blurry vision to the point where I couldn’t read a book because everything blurred together. This GI told me that I had IBS and I pretty much just had to deal with it. I was getting frustrated and still felt so sick, so I decided to get a second opinion.
My friend who has severe crohn’s disease (she has been in remission for 10 years!) recommended I go to her GI. Her Crohn’s was very severe but she said I have a lot of the same symptoms she did before she was diagnosed. My first appointment with her was great. She scheduled a lactose and fructose intolerance test which both came back positive...I was finally feeling hopeful. I went on the low fodmap diet thinking my symptoms would disappear...but that was far from the truth.
The diarrhea and stomach pain was still horrible and now I was getting a constant feeling of having to go to the bathroom. No matter how many times I went, I never felt like I was finished going. And everytime I went, I had horrible cramps, like I was pooping out glass (sorry! TMI) I was also pooping out a lot of mucus and some blood, even without a bowel movement. I know I do have hemorrhoids, so the blood might be from that, but the mucus is still a mystery to me. Sometimes I would think I had to go to the bathroom, but when I was done, it was just mucus. There is also always undigested food in my BM’s. I started getting really depressed because I wasn’t feeling any better but I wasn’t getting any answers.
My GI then prescribed me Colestipol and scheduled more blood tests and some stool samples...Calprotectin, a few for parasites, and some to rule out an infection. Those tests all came back negative,(not sure what the exact number were) and the Colestipol wasn’t working as good as I hoped it would. Then she prescribed me Lomotil, which I read good reviews about, so I was hopeful. (I am still taking Lomotil by the way) While it does help a little, I still don’t feel great and the side effects are pretty bad. It makes me feel so nauseous, almost to the point where I feel like I have to throw up. It also makes me super tired...like I can sleep for 11 hours straight and still be tired the next day, which definitely isn’t good since I’m starting nursing school in a few days.
I begged for more tests, because I was feeling so sick and I needed answers. So she scheduled a sigmoidoscopy...and what do you know...that test and biopsies for that also came back completely normal. I was at a loss. Still feeling completely horrible, tired, weak, and in need of answers.
As a last ditch effort my GI said we could try the pill cam...and that’s where I’m at now. I just scheduled that for October, pending insurance approval. So as of right now I’m still diagnosed with IBS, but I think it’s more than that. Not a single day goes by that I don’t have cramps, or nausea, or pain, or fatigue. I feel sick everyday, and that seems unusual for IBS. My 30 pound weight loss is also a big reason for thinking it’s something other than IBS. My GI said she is looking for Crohn’s and Celiac with the pill cam.
For a while, she was a little weary about a Crohn’s diagnosis, since my Calprotectin was low, but I heard that is not always a reliable test. She’s back on thinking it might be Crohn’s, since I still have symptoms, so I guess we’ll see after I get approval. I’m just really looking for something to validate how bad I feel all the time! So that’s my story, sorry it’s so long! I’m just looking for some answers. Any advice on what you guys think it is, or what else I can do, would be super helpful! I am starting nursing school on Monday and I am super nervous about it because of how horrible I’ve been feeling. Any insight is appreciated! Thanks for listening!

Becky
 
Last edited:
I had a lot of similar symptoms (etc). The most important thing for me was to go to a low carb diet (I first followed the "Yeast Connection" type of diet, then a version of the Specific Carbohydrate Diet). Essentially, low starch, low disaccharides (table sugar), but some monosaccharides are ok (maybe honey, high-fructose corn syrup). I could usually eat some carbs between meals (a little at a time). Along with this, saccharomyces boulardii was very important for me. I've been taking it for 15 years and get sick when I stop.

Also - a negative celiac test doesn't mean that you are ok with gluten. Try a few weeks strictly gluten-free and casein-free (no dairy). I also can not have artificial sweeteners, soy or oats. Check out the Microscopic colitis forums at Persky Farms (google it). They recommend getting enterolabs testing to identify the foods you are reacting to, but you might figure it out with careful diet.
 

cmack

Moderator
Staff member
Welcome Becky,

I'm glad you are getting tests done, something is up for sure. Hopefully you will have a diagnosis soon. Try not to stress too much but do keep seeking answers. I wish you the best.
 
Hi everyone, how are you all doing?

I'm still struggling with the same old issues. My breathing has completely gone to shit. I have ALL the symptoms of reflux, all the classic ones - yet my pH test with impedance showed jack shit last week. Not sure if my surgeon's office are straight up lying to me or if I'm going insane :p

I don't trust them. They've lied to my face about things before. But I don't believe they'd lie about test results so it's a head scratcher for sure. Been feeling very hopeless. Last appointment with my surgeon (+ the resident who actually did my surgery, they've finally given up that lie since I confronted them about it...) tomorrow. I suspect it'll be as useless as all the other ones have been.
 
Hi Izzie and everyone!

It's been a while since I posted, I know, but I've been very busy with school and appointments. I switched from the Master in Social Work program after 1 quarter to the MS in Clinical Mental Health Counseling program at the same school and I am SO glad I did! The professors are much better and so is the program. I want to specialize in Addictions and the school has an Addictions Counseling specialization within the CMHC program! The Social Work program was just too generalized. I am so glad it only took 1 semester to figure it out so I didn't waste so much time. :)

In other news, I'm in an active flare with my autoimmune connective tissue disease and I upped my Plaquenil from 1 tablet a day to 2 as directed by my rheumatologist. I know I'm in an active flare when the rashes worsen and I experience more chronic pain. I'm eating very healthy with lots of fruits and veggies and getting plenty of exercise to ensure this flare lasts as short as possible. I'm pretty sure the heat brought the flare on as it has been unbearably hot! I cannot wait until the cooler weather comes! I see my current rheumatologist next month, but I am on a new insurance plan thru the Healthcare Exchange since my COBRA rates increased (the new plan is MUCH cheaper). I found a rheumatologist who is much closer that I may start seeing.

I was wondering, though, if anyone has experienced swelling between the knuckles on their hand and/or tightening of the two middle fingers on the same hand? I've had this for about 2 months but the original hand x-ray did not show any hand deformity or damage. I have a history of tendonitis in the other arm (incidentally, I have tennis elbow right now) so I'm not sure if it's that or part of the autoimmune disease. Hence, why I want to see a rheumatologist sooner.

Hope everyone is well!
 
Izzie:

I wanted you to know I have been giving your continuing problems much thought but haven’t had time to post; between work and my migraines I have been fairly flattened. I have been researching atypical GERD and did find the attached article which I thought was interesting. It discussed esophageal hypersensitivity which I thought might fit some of your symptoms. It is an actual disorder, not a manifestation of panic attacks, although underlying anxiety may assist in triggering the disorder. It mentions the importance of diagnosing it properly (as in distinct from GERD even though many of the symptoms can be the same, but without increased acid ph in impedance studies. The article says it is vital to have a practitioner who is willing to search for a true disorder rather than diagnosing refractory GERD. I will continue looking for research on this condition as well as other atypical GERD disorders. Just wanted to let you know that I was thinking of you.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/

Augusta
 
Jabee that is so thoughtful of you I can't even believe it. I myself have brought up hypersensitivity but haven't been successful at finding a doctor who will treat it or even considers it a real thing. I'm still looking into what my weird PPI reaction may be and if there's something to do about that, as I still respond well to them in terms of symptom improvement, it's just that I can't seem to take them without adverse effects. As for anxiety, I can't say I've been experiencing it much at all lately, though I will say I've been under a ton of stress just from not really getting adequate help with all the physical stuff that's going on. And stress is not the best either.

I do question whether esophageal hypersensitivity would cause as many problems with the throat as I have, however. My voice is a mess, I have chronic cough, and I wake up with a sore throat constantly. And it's made worse by reflux triggers as well. Also the fact that I was doing better initially after my surgery makes me believe that there is some kind of reflux component at play still, but it's possible that it is in reality quite minor, and my tissues are just way too sensitive to it.

Really, thanks so much for thinking of me :) Warms a cold heart haha. Very interesting article as well, I might actually make one of my doctors read it. Still planning my trip abroad, combination medical care and vacation, so hopefully I'll be able to see someone with more experience in the field.
 
And MissLeopard - that's so exciting with your studies. I used to be in a BSc Social Work program that I ended up dropping as I got sick but I have hopes of maybe returning some day, still haven't decided, but it's a fascinating field :)
 

Lynda Lynda

Senior Member
Location
N/A
Welcome Becky,

I'm glad you are getting tests done, something is up for sure. Hopefully you will have a diagnosis soon. Try not to stress too much but do keep seeking answers. I wish you the best.
Chris, I hope you are feeling better.
I hope you continue posting, we all care about you.
😊❤
 
Ok 4 month of blood test Fecal calprotectin and colonscopy and endscopy Mri nothing there only there is thickness 6mm and 3cm length in terminal ileum but the biosby show nothing... diarrhoea one time every week. But there is bloating and gas and little pain all over my belly for 2 month now. I ask my Gi gor pill cam he didn't recommend beacuse he told me you are normal this only ibs..what should i do??
 
Hi all,

Ok, long story short, Doc thinks I have Crohn’s. Backstory, I was diagnosed with Collagenous Colitis in 08/2017, lost 55 lbs and completely changed diet to feel better. Took Entocort, went into brief remission. D and cramps returned shortly after coming off last Entocort dose in 12/2017. Went all winter, spring and summer of 2018 with “mostly tolerable” D and cramping, but I went into a horrible flare up after a round of antibiotics from a sinus infection this 07/2018. It was so bad, I ended up in emergency room, have lost an additional 15 lbs since July, not hungry, have watery and violent D several times a day, and abdominal cramping to all hell. Tried some left over Entocort I had at the end of July 2018, at usual dose, 1 mos of 9mg, 1 mos of 6mg, and I am totally non-responsive.

GI doc suspects I have Crohn’s, and he wanted me to try cholostrymine first to see if it helped. I had a severe bad reaction to it (balled up on bathroom floor cramps and D) for a couple of days while it works it’s way out of my system. I didn’t take it again. ER gave me tramadol, which worked alright, but I don’t have any left, and don’t want to be on opioids as a fixall anyway... GI doc put me on hyoscyamine, which works alright.

In the meantime, here is why I am worried and wondering: my lab work returned abnormal— positive lactoferrin and positive iFOTB (occult blood, and leukocytes in stool). Lab confirmed it is not a viral or bacterial infection. CBC returned high monocytes, but everything else is normal, including CRP. So I can guess that I have a condition that is not IBS, but probably Crohn’s or UC... though, last summer when I was dx’d collagenous colitis, colon looked rather normal aside from the biopsies revealing thick collagen layer.

What does the abnormal lab work mean? I have colonoscopy next Monday, oct 1. If that shows up as normal like last year, should I ask GI doc to do endoscopy, and or pill cam? He won’t put me on prednisone until he sees the colonoscopy. I’m working from home while I am sick, and I can’t help but wonder what these test results mean. Anyone else in my boat? Here’s hoping we all feel better soon.

Cmducks
 
Hi all,

Found myself here after a web search. Been suffering many symptomsfor years and have been referred by my GP to various specialists who all say it's something else. I'm 37.

My GP is convinced it's Crohn's due to all my symptoms. I've suffered for years with upset stomachs and the last 18 month have been way worse. I've been anaemic and have a vitamin D deficiency for a year. I get muscle pain and fatigue, get a sore neck sometimes and for about 7 months have had a tender area of skin below my ribs that's sore to touch. Also was diagnosed with gastritis 6 years ago and been on omeprazole since. I get nausea and dizzy sometimes too. Very blurry vision a lot of the time too. I did loose 8 pounds last year and couldn't put any weight on. I also suffer from bad night sweats and during the day I get very shivery or clammy even when it's not hot.

In December 2017 after getting issues swallowing I had another endoscopy and was told I have a tortuous easophogus. Last month I was rushed to hospital after vomiting blood but they didn't know what caused it.

The gastrologist I was sent to said it was IBS I have and after a stool sample my inflammation was raised at 103 but he said nothing to worry about and doesn't need to see me for 6 months. If I want the colonoscopy I have to contact him s he doesn't think I need it.

I had also been sent for various scans, barium meal. Barium swallow incase I had a slow emptying stomach causing D but they said all clear.

I have weeks between bowel movements or I can spend days going up to 16 times, last week I kept feeling the urge but it was just mucous each time.

Recently getting out of breath dead easy and a tight chests and been placed on Ramapril for high blood pressure.

I am just fed up feeling like this and want it diagnosed as I don't think it's IBS either.
 
Hi everyone,

I’ve come to complain! I used to suspect crohn’s, but I’m actually pretty positive I don’t have it.....so maybe I shouldn’t really be on this forum anymore, but I like you guys sooooo....

Anyway, I started seeing a new doctor a few weeks ago. She’s an MD, but she is more of the “alternative” type. I’ve gone the western route, I’ve seen a naturopath, so I figured something in the middle might be worth trying. Who really knows? I’ll pretty much try anything at this point! My new doctor seems pretty good so far. She spent 3 hours with me my first appointment, and she assured me that she’ll never give up on me. She said she’s going to get me well enough to go back to school. We’ll see....

So of course I have my digestive issues and all my other issues, but my anxiety has become SO bad. I never had anxiety until about a year and a half ago. It just came out of nowhere, but I know it’s related to whatever’s going on inside my body. I don’t leave my house except to go to doctor’s apppintments, and they just about kill me every time. I’m so exhausted afterward that I literally need days to recover. But today’s was extra bad. My dad has to drive me to my appointments because my anxiety is too bad for me to drive anywhere. On the car ride to the doctor’s office, I started feeling like I couldn’t breathe very well. I could still breathe, and you wouldn’t have even noticed anything if you just looked at me, but it felt like my body forgot how to breathe so I had to manually do it. So I made it to the doctor’s office, but I started freaking out more. The nurse lady asked how I was doing. I told her crappy and that I had really bad anxiety. She asked if she should wait to take my blood pressure. I didn’t really answer because I had too much going on in my head. I think I just shrugged my shoulders maybe. So she took it. It was something like 175/99. Or maybe it was 175/102. Something in that range. It’s all kind of a blur to me now. My pulse was 120. (Although it felt like it was 200!) So then I had to get my blood drawn. My legs were visibly shaking, I was sweating, my heart was beating so fast, I was dizzy, and I felt like I was either going to throw up or pass out. Luckily, I didn’t do either. But it was all so scary. (I don’t have issues with getting my blood drawn - just with leaving my house, apparently.) And I’m sure I looked and sounded like such a freak! Luckily the nurse was super nice to me. I could tell she felt bad for me, and she was trying to do everything she could to help me. But there’s no controlling this crazy body! You never know what it’s going to do.

I’m just sooooo tired of being sick.

Thanks for letting me vent on here. My family and friends just don’t get it. Some of them are nice and I can tell they feel bad about my sucky life, but I don’t think they actually have any idea how bad it truly is. Some people complain about the dumbest, tiniest things, and it drives me crazy because literally all I want is to be healthy. I’d love a normal life where I get to have a regular job and complain about the dumb things that happen there, you know?

Sorry this was so long, but I appreciate it if you read it all. And welcome to all the new people! Unfortunately, I don’t have any good advice for you, but I’m here to listen. :)
 
My worry would be that Sulfasalazine will mask test results. To be diagnosed with IBD, you will need a colonoscopy. Taking SSZ before it may make it look better than it should.

I do understand wanting to be treated ASAP. But in the long run, having the official diagnosis will help you more.

Same with rheumatology - you should really see them before you start any medication. If you have a form of SpA, it may change your treatment for both diseases.

Sulfasalazine is a pretty mild med, but I would hate for it to mask any inflammation that is there. You've waited SO long for a dx, I would just focus on getting one by a GI. The CT scan results showing colitis will definitely help, but scopes are the gold standard for diagnosing IBD.

Izzie - has anyone discussed a feeding tube with you? If you can't eat because of reflux/trouble swallowing and the breathing issue/vocal cord dysfunction, a feeding tube could really help.

Really sorry things have been so tough - hang in there!!
I've been wanting one for ages because eating is really what triggers my symptoms, but nope. Health care here is just 100% not focused on quality of life, just their numbers and tests and if the answer is not obvious, they do nothing. Still awaiting my second opinion so fingers crossed.

Have been finding some relief with very very careful diet planning, I must say. Also saw a private practice GI doctor who put me on carafate and digestive enzymes, which hasn't been a magic fix or anything but in combination with diet I have seen some small improvements. Enough to tide me over until I can get a proper second opinion by another surgeon.
 
akgirl - I had terrible anxiety when my B12 was low. I took sublingual B vitamin liquid and improved tremendously.

Even if you were told that you don't have Celiac, you might benefit from gluten-free (and some people need to avoid, dairy, soy, etc). Check out the microscopic colitis forum (at Persky Farms - Google it). They have a very specific approach to diet, etc.

If anxiety continues, there's no shame in going on an SSRI. I think Paxil is known to be good for anxiety, but can cause weight gain and the usual side effects of SSRIs (talk to your Dr, lots of options).
 
SN8888 - My doctor recently had me start taking sublingual B12, and she’s actually prescribing me B12 shots that I’m supposed to have someone give me twice a week. I didn’t realize it could help with anxiety though, so that’s good to know! Let’s hope it helps me! I’ve taken various antidepressants and anti-anxiety meds over the years, but most of them have been to see if they’d help with my digestive issues. I am thinking I might need to try something for my anxiety though, because it’s ridiculous at this point!

And I’ll check out that forum! I’m definitely willing to try a different diet. I’ll pretty much try anything at this point.

Thanks for all your advice!
 
Hi everyone! Just wanted to pop in and give an update!

My undifferentiated connective tissue disease is giving me jip the last few months. I have gotten both tennis elbow as well as an ankle injury from my Deltoid ligament being hurt after accidentally banging it on the coffee table. I saw a podiatrist last week and she took a series of x-rays and then gave me an ankle stabilizer to wear. I see her again next week for a follow-up. She wants me on prednisone, but I don't want to take it because I'm trying to lose weight and prednisone makes me gain like crazy due to eating too much and MAJOR fatigue.

Instead, I see my rheumatologist on the 16th and will talk to her about stronger meds. My left hand still has stiffness in the middle and ring finger and there is still swelling in between my index and middle finger. The Plaquenil no longer seems to be working, unfortunately. Our next stop is probably methotrexate as that is what she discussed using. My aunt used it for rheumatoid arthritis and was successful, so I hope, if I have to use it, it will work for me, too.

I hope everyone else is doing well!
 

Maya142

Moderator
Staff member
MissLeopard83, I would most definitely not take prednisone from a podiatrist. If you think you need it, discuss options with your rheumatologist.

I would also ask the rheumatologist to take a look at your ankle x-rays and/or get them evaluated by a radiologist.

I would also make sure you have evidence of inflammation (on ultrasound or MRI) before you escalate therapies for mixed connective tissue disease. Since you have osteoarthritis elsewhere, hand osteoarthritis is a possibility. Or it could be fibromyalgia pain and stiffness (fibromyalgia can and very often does cause stiffness). Since you have 3 medical conditions that could all cause hand pain, you don't want to go in the wrong direction so you have to examine all the possibilities.
 
MissLeopard83, I would most definitely not take prednisone from a podiatrist. If you think you need it, discuss options with your rheumatologist.

I would also ask the rheumatologist to take a look at your ankle x-rays and/or get them evaluated by a radiologist.

I would also make sure you have evidence of inflammation (on ultrasound or MRI) before you escalate therapies for mixed connective tissue disease. Since you have osteoarthritis elsewhere, hand osteoarthritis is a possibility. Or it could be fibromyalgia pain and stiffness (fibromyalgia can and very often does cause stiffness). Since you have 3 medical conditions that could all cause hand pain, you don't want to go in the wrong direction so you have to examine all the possibilities.
I just have had horrible experience with prednisone in the past for asthma related issues.

When I had the hand x-rays a few months ago, there was no arthritis - osteo or otherwise - visible. It's been pretty constant and has been there for about a month. I took a picture of it when I first noticed in on Sept. 7th so I could show the rheumatologist when saw her again this month. Neither Tylenol or Advil helps it. I had to stop the Diclofenac as it made my blood pressure worse.

I see the podiatrist again on next Friday so I'll ask for a copy of the x-rays to bring with me to the rheumy. I also had blood work drawn yesterday which included a CBC, CMP, and sed rate that she requested I complete before my next rheumy appointment. The fibromyalgia has been pretty well controlled thanks to an antidepressant I'm on, so I'm pretty sure it's not related.

I'll keep you guys posted!
 

Maya142

Moderator
Staff member
Did you get to see the new rheumatologist MissLeopard83? How did it go? Hope your hands are feeling better now.

I can't remember which state you're in but it's starting to get colder here (it's around 55 degrees F), and my younger daughter has been complaining about very stiff and painful fingers, wrists and elbows. It makes even typing hard :(.

I hope the new rheum has some good ideas for your hands!!
 
Did you get to see the new rheumatologist MissLeopard83? How did it go? Hope your hands are feeling better now.

I can't remember which state you're in but it's starting to get colder here (it's around 55 degrees F), and my younger daughter has been complaining about very stiff and painful fingers, wrists and elbows. It makes even typing hard :(.

I hope the new rheum has some good ideas for your hands!!
Hi Maya!

I see my PCP on Tuesday so I will ask for the referral then. I thinking about seeing the rheumy that shares her practice or another one down the street from me.

As for my current rheumatologist, I saw her again on the 16th and told her about my hands swelling. She did a physical exam, saw where it was but only told me that my tendons were in "great alignment." She never told me what the swelling could be. My mom thinks it might be a ganglion cyst but it formed in between my first and second finger on my left hand on the top part, below my fingers and in between the knuckles. It's kind of squishy, not hard like a cyst. I felt so irritated with the doctor. She also pushed MTX on me and only gave me an option between that and Imuran - two very toxic drugs. I had researched before our appointment and found that there were other, safer options, and MTX and Imuran are usually not second line treatments due to toxicity and risk of lymphoma.

Also, I found out that the Plaquenil I've been taking for several months now has sulfa in it when I clearly stated I have a sulfa allergy! I found out because I asked her if the Plaquenil could cause the mysterious itchy rashes I've been finding randomly and that's when she told me. I was livid! That's the second time I've been prescribed a sulfa drug by this practice - the Plaquenil was prescribed by the first rheumy I saw and then Celebrex was prescribed by the current one. I don't think they really look at drug allergies as I told them it causes rashes when I take sulfa drugs and also affects my asthma (which has also been flaring). She told me I could cut the dose to 1 pill per day but I don't want to take it at all. These rashes are huge and last for several weeks before disappearing. :(

Now, I'm basically stuck with MTX until I can see a new rheumy or take nothing at all. The current rheumy gave me a script for injectable MTX since I was having pretty bad nausea with the oral kind. I am supposed to take it every Wednesday since that is the day I started. Next week is supposed to be the first time I inject it but I'm scared. The nausea has been horrible and I keep having to use Zofran to get it under control. My hair is thinning again, too, but I don't know if that's MTX (only been on it 2 weeks) or another med.

Please say some prayers that I can get in with a new rheumy. I want someone else who is unbiased and can give me some safer, less toxic options. I know there are a few out there that are better for lupus but MTX doesn't seem to be one of them since it's mainly for RA according to patient reviews.
 

Maya142

Moderator
Staff member
MTX is used for SLE sometimes. You don't have a formal SLE diagnosis yet, right? You're currently dxed with MCTD (Mixed Connective Tissue Disease), right? That may be why the rheumatologist is unwilling to use anything else.

Though frankly, I don't know what safer options would be - MTX is pretty safe. It can be hard to take due to side effects, but it certainly is safer than Imuran. What other options did you read about?

I would certainly stop Plaquenil if you're allergic to it - I can't believe she missed that and is now telling you to continue with it? Does she think it's a side effect or an actual allergy? Because if the rashes are a side effect, they may be annoying but the med would be safe to take.

If it's an actual drug allergy, the medication should be stopped because your allergic reaction may be an itchy rash now, but it could at any point become worse and you don't want to go into anaphylaxis. At least, that is my understanding of drug allergies.

I wasn't aware Plaquenil was a sulfa drug - are you sure it is? It is not listed in any of the lists of sulfa drugs that I have seen. So I looked it up and I found that it is NOT a sulfa drug. Sulfa is not the same as Sulfites or Sulfates. Plaquenil is Hydroxychloroquine sulfate.

It does cause rashes, but in one of studies done, people with SLE who had sulfa allergies did not develop side effects.

That may be why your rheumatologist did not take you off Plaquenil immediately.

Here is some info: https://www.healthline.com/health/allergies/sulfa-sulfite#sulfa-allergy

Here is one study: https://jamanetwork.com/journals/jamadermatology/fullarticle/478952

It is fairly common to need Zofran with MTX. We were told to give it half an hour before MTX and to give MTX right before bed, so my daughters could sleep through the worst of the side effects. Then we gave Zofran again the next day.

Are you on folic acid with the MTX? If not, you absolutely have to be. If you are, how much? You may need a higher dose to prevent side effects.

For hair thinning (again, another common side effect of MTX), upping folic acid might help. You could also try Leucovorin which is folinic acid.

Biotin also helps with hair thinning and is OTC. Check with your doctor of course, but I would guess you'll be allowed to try it. Both my girls took it with MTX.

I will write more later - have to run.
 
MTX is used for SLE sometimes. You don't have a formal SLE diagnosis yet, right? You're currently dxed with MCTD (Mixed Connective Tissue Disease), right? That may be why the rheumatologist is unwilling to use anything else.

I actually have a diagnosis of Undifferentiated Connective Tissue Disease but meet at least 4 of the 11 criteria specified for SLE - photosensitivity, positive ANA, butterfly rash, arthritis, and anemia.

Though frankly, I don't know what safer options would be - MTX is pretty safe. It can be hard to take due to side effects, but it certainly is safer than Imuran. What other options did you read about?

I was focusing on meds that didn't cause a risk of lymphoma. There's a few out there, but I don't know if they are available to me. I still need to do some research.

I would certainly stop Plaquenil if you're allergic to it - I can't believe she missed that and is now telling you to continue with it? Does she think it's a side effect or an actual allergy? Because if the rashes are a side effect, they may be annoying but the med would be safe to take.

If it's an actual drug allergy, the medication should be stopped because your allergic reaction may be an itchy rash now, but it could at any point become worse and you don't want to go into anaphylaxis. At least, that is my understanding of drug allergies.

When I asked her if the Plaquenil could be causing the rashes, she said it might be an allergy. She originally had me on a dose of 1.5 pills (300mg) and lowered it to 1 pill (200mg). The rashes persisted even after the lower dose. Once I stopped, they started disappearing.

I wasn't aware Plaquenil was a sulfa drug - are you sure it is? It is not listed in any of the lists of sulfa drugs that I have seen. So I looked it up and I found that it is NOT a sulfa drug. Sulfa is not the same as Sulfites or Sulfates. Plaquenil is Hydroxychloroquine sulfate.

It does cause rashes, but in one of studies done, people with SLE who had sulfa allergies did not develop side effects.

That may be why your rheumatologist did not take you off Plaquenil immediately.

That's what the rheumatologist told me. However, when I looked it up last night, it's much more likely that I have either an allergy or sensitivity to quinine. My aunt cannot take it, either, due to an allergy.

Here is some info: https://www.healthline.com/health/allergies/sulfa-sulfite#sulfa-allergy

Here is one study: https://jamanetwork.com/journals/jamadermatology/fullarticle/478952

It is fairly common to need Zofran with MTX. We were told to give it half an hour before MTX and to give MTX right before bed, so my daughters could sleep through the worst of the side effects. Then we gave Zofran again the next day.

Are you on folic acid with the MTX? If not, you absolutely have to be. If you are, how much? You may need a higher dose to prevent side effects.

For hair thinning (again, another common side effect of MTX), upping folic acid might help. You could also try Leucovorin which is folinic acid.

I'm on 1mg of folic acid as prescribed. That's what she gave me at our last appointment.

Biotin also helps with hair thinning and is OTC. Check with your doctor of course, but I would guess you'll be allowed to try it. Both my girls took it with MTX.

I will write more later - have to run.

Unfortunately, biotin interacts with thyroid meds for hypothyroidism. My pharmacist told me to avoid it. :(
See my replies in above. :)

ETA: One thing that the rheumatologist and I discussed at my last appointment is the use of corticosteroids. At the time, I was against them because I've used them in the past for asthma and bronchitis and they always make me feel horrible - ravenous appetite, mood swings, fatigue, etc. However, I think I'd rather give them a try and see if it brings down the swelling before going to MTX, Imuran, or other immunosuppressants.

I'm going to ask my PCD today if she could prescribe a short regimen since she is closer to my house than the current rheumy is and I could see her much more easily since she's in-office more often (the rheumy does most of her practice about 30 miles away from me and I only see her on Tuesdays when she is in her other practice).
 
Last edited:

Maya142

Moderator
Staff member
I looked up the difference between UCTD and MCTD and this is what I found.

When these conditions have not developed the classic features of a particular disease, doctors will often refer to the condition as "undifferentiated connective tissue disease" or UCTD. This designation implies that the characteristic features that are used to define the classic connective tissue diseases are not present but that some symptoms or signs of a connective tissue disease exist. For example, a person may have a special antibody in the blood, such as antinuclear antibody, along with muscle pains, but no other definable features of a classic connective tissue disease. Individuals with undifferentiated connective tissue disease may never develop a fully definable condition or they may eventually develop a classic connective tissue disease.

Mixed connective tissue disease (MCTD), which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective-tissue diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (that is, with MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three component illnesses, most commonly the scleroderma features.
Based on my research, Plaquenil is not a sulfa drug. It has Sulfate in it but that's different from sulfa. It certainly could be the quinine that you're reacting to.

I definitely understand that you are frustrated with your rheumatologist. Honestly, I don't think she's giving you good information. If she thinks you're allergic to Plaquenil, she should have stopped it immediately.

Is there any way you can see a rheumatologist in a university/teaching hospital?

If you're taking 1 mg of folic acid, you can definitely go up - we upped it to 2 mg daily for my daughter. It did help with side effects - even with hair thinning.

Leucovorin is another option - it's folinic acid and is used as a rescue drug when MTX is given in very high doses (like 1000 mg) for cancer.

A much lower dose of Leucovorin is given 12 or 24 hours after you take MTX. It helps with the side effects. Doctors do not like to use it though unless you are on a high dose because it does make MTX a little less effective.

I can't think of any medications used for Undifferentiated Connective Tissue Disease or MCTD that are safer than MTX. I looked it up and found that NSAIDs, MTX and Imuran were used for UCTD.

What were the meds that you were thinking about?

Imuran is definitely riskier than MTX in terms of the Lymphoma risk, as well as non-melanoma skin cancer. I worried a lot more when my kiddo was on Imuran vs. MTX. She also got MANY infections on Imuran.
 
I looked up the difference between UCTD and MCTD and this is what I found.

Yep, I had to do the same research because I had never heard of UCTD. It's kind of ambiguous, really, in that it's more of a guessing game for doctors on which treatments will help your symptoms.

Based on my research, Plaquenil is not a sulfa drug. It has Sulfate in it but that's different from sulfa. It certainly could be the quinine that you're reacting to.

The fact that my current rheumy thought it was a sulfa drug just makes me want to switch even more. I don't know where she got that idea from, but I didn't find anything, either, that said Plaquenil was a sulfa drug.
People do, however, have reactions to quinine.


I definitely understand that you are frustrated with your rheumatologist. Honestly, I don't think she's giving you good information. If she thinks you're allergic to Plaquenil, she should have stopped it immediately.

Honestly, I'm fed up. The whole time, I felt like she was giving me things to shut me up rather than because I really need them. I felt like I was wasting her time, which is not a good feeling. I don't really trust her.

Is there any way you can see a rheumatologist in a university/teaching hospital?

I have HMO insurance so I'm rather limited in who I can see. The rheumatologists that are in my network are connected to faith-based hospitals, mostly, with a handful being at the local university clinic. They do NOT have good reviews.

However, when I met with my primary doctor today, she and I discussed me switching to the rheumy in the same office. She gave me a referral and I was able to schedule an appointment with the new one on Nov. 28th. She also had me sign a release form so that the office could have the information from my current rheumy sent over before my appointment. I love this doctor! She is really on-the-ball!


If you're taking 1 mg of folic acid, you can definitely go up - we upped it to 2 mg daily for my daughter. It did help with side effects - even with hair thinning.

Leucovorin is another option - it's folinic acid and is used as a rescue drug when MTX is given in very high doses (like 1000 mg) for cancer.

A much lower dose of Leucovorin is given 12 or 24 hours after you take MTX. It helps with the side effects. Doctors do not like to use it though unless you are on a high dose because it does make MTX a little less effective.

If the hair thinning continues, I will definitely talk to the new rheumy next month about it.

I can't think of any medications used for Undifferentiated Connective Tissue Disease or MCTD that are safer than MTX. I looked it up and found that NSAIDs, MTX and Imuran were used for UCTD.

What were the meds that you were thinking about?

Since there are no meds specifically for UCTD, it was a little bit of a test to try to find medications that might be an option. Plaquenil kept coming up multiple times. However, I found that Anakinra/Kineret had relatively low side effects listed, which is surprising because it is a biologic drug but works differently than most. It's mainly used for RA but can be used for other autoimmune disorders. Every single website that I looked at had information that was much less worrying to me than MTX. Of course, it's something I'll have to make sure of.

I'm still researching other medications. Benlysta came up several times because it's specific for lupus, but it's very new, very expensive, and very risky. That one is not something I'm very interested in. :(


Imuran is definitely riskier than MTX in terms of the Lymphoma risk, as well as non-melanoma skin cancer. I worried a lot more when my kiddo was on Imuran vs. MTX. She also got MANY infections on Imuran.

I about did a jaw drop when I saw how many horrendous side effects were associated with Imuran! What a scary medication!
Hi Maya,

Please see my replies above. To add, I am really hoping this new rheumy does more imaging. I've only had x-rays and I really think it would be a good idea to get an MRI to look for swelling and other things not visible on x-ray. Tomorrow is my dose date for MTX but I'm seriously considering holding off until I see this new rheumy for a 2nd opinion in a month.

ETA: Kineret is actually VERY expensive, even with insurance. Yikes! :eek:
 

Maya142

Moderator
Staff member
I have honestly NEVER heard of Kineret being used for UCTD. But also no insurance company is going to allow you to jump to a biologic. They now require you to try other therapies first - things like MTX, Imuran, Cellcept.

Kineret is used for 3 conditions - Systemic JIA, Still's Disease and Periodic fever syndromes (autoinflammatory and very, very rare) and RA.

It is much safer to keep you on something like MTX or Plaquenil till they know which diagnosis the patient has. UCTD is so broad that doctors often wait to see clear symptoms of SLE, Scleroderma, Dermatomyositis, Sjogren's etc.

Then if they determine that you have many symptoms that match those of SLE, for example, then they'll treat you for that. The treatment usually starts with MTX/Imuran and Plaquenil. Cytoxan is also used a lot. So is Cellcept. Then if all that fails, they go to biologics - Benlysta is used often.

I've never heard of Kineret being used for UCTD - did you find it in a case study? It's definitely used for RA, but not as a first line treatment usually. Generally anti-TNFs or Actemra are used first for RA.
 
I have honestly NEVER heard of Kineret being used for UCTD. But also no insurance company is going to allow you to jump to a biologic. They now require you to try other therapies first - things like MTX, Imuran, Cellcept.

Kineret is used for 3 conditions - Systemic JIA, Still's Disease and Periodic fever syndromes (autoinflammatory and very, very rare) and RA.

It is much safer to keep you on something like MTX or Plaquenil till they know which diagnosis the patient has. UCTD is so broad that doctors often wait to see clear symptoms of SLE, Scleroderma, Dermatomyositis, Sjogren's etc.

Then if they determine that you have many symptoms that match those of SLE, for example, then they'll treat you for that. The treatment usually starts with MTX/Imuran and Plaquenil. Cytoxan is also used a lot. So is Cellcept. Then if all that fails, they go to biologics - Benlysta is used often.

I've never heard of Kineret being used for UCTD - did you find it in a case study? It's definitely used for RA, but not as a first line treatment usually. Generally anti-TNFs or Actemra are used first for RA.
I'll have to wait and see what this new rheumy says later this month. It will be interesting to see if she sticks with UCTD like the other two did (they were in the same practice) or she moves to a solid diagnosis. I'm going to make a list of all the symptoms I've experienced - both previous and current - to show her when I see her on the 28th.

As for the methotrexate, I decided to do the first injection because my joints were really bothering me. I was scared, at first, to do it because I've never been shown so I had to figure things out for myself. The scariest part was how much methotrexate I needed to draw up into the syringe.

I was prescribed insulin needles and they measure in units, not mL. However, I realized there was 1mL listed at 100 units so I drew up 40 units of methotrexate into the syringe which equaled 0.4mL (my prescribed dose). I then had to find the right pressure to get the needle thru the skin. I've heard that the best place to inject MTX is the top of the thigh, but my skin there is kind of tough to pierce thru. I finally managed to do it, though, and SLOWLY injected the MTX. It didn't hurt at all going in - just a little bit sore.

I'm happy to say that there has been NO nausea! I've been able to eat normally and haven't used any Zofran, which is amazing! I am, however, in the midst of a fibromyalgia flare due to the changing weather, but that's normal. It's nothing I can't push thru! :)
 
After doing some research on how to stop autoimmune disease without the use of immunosuppressants, I decided to adopt a plant-based diet. I read tons of success stories, including the "Forks Over Knives" website, and several people there have stopped their autoimmune disease (RA, lupus, MS, etc) with a whole-food, plant-based diet. I figured I didn't have anything to lose so I went to the store yesterday and got tons of organic veggies, fruits, and good quality meat substitutes (Amy's Kitchen is my fave). I toyed with the idea for about a week and then decided it was worth it so today was my first day and I cut out diet soda, too, and am sticking with green tea or water (including sparkling). My joint pain is already reduced (though I'm not noticing much difference in my fibromyalgia) but I know it will take some time to see a big difference.

I see my new rheumatologist on the 28th this month so I hope I have some positive news by then! Maybe I won't have to be on methotrexate! That would be awesome!
 

Maya142

Moderator
Staff member
I hope the diet helps!

The good part about MTX is that it can be started and stopped easily - unlike biologics. So you could do a trial without MTX and if it doesn't work, just re-start MTX.
 
Thank you for your support! Even though it's only been a week, I feel better! My joints don't hurt as much, I'm taking less pain relievers, my energy is higher, etc. Even the swelling in my hands has gone down! Tomorrow is my usual day of MTX but I'm skipping it! It made me feel like crap last week for several days and I just don't see that as a viable option. If a diet can make me feel good without drugs, then it's worth it! :)
 

Maya142

Moderator
Staff member
I would check with your rheumatologist before stopping anything. MTX may make you feel crummy but it is generally given for a reason - to prevent joint damage and to control inflammation. It can also prevent disease progression.

Your case is a bit "fuzzy" considering you have UCTD and no firmer diagnosis that absolutely needs treatment to prevent progression - such as in RA or Lupus.

With UCTD, you may be able to get away with using diet. But remember that diet has not been proven to reduce joint damage or prevent disease progression. You could go off MTX and end up with full-blown RA or SLE.

So I would just consult your rheumatologist. I know you are going to see a new one but until you have established care there, you should ask your current rheumatologist. There are things you can do to deal with MTX side effects.

Additionally, I know you have moved from rheumatologist to rheumatologist. I'm sure it has been for good reasons, but that reality is that doctors view "doctor hopping" as sort of suspicious. So I would be cautious about changing doctors too much.
 
It's funny you both should mention staying on it because I actually think it was helping my joint pain. I was off it for about 3-4 days and noticed my pain flared quite a bit due to the cold weather. I decided to move my injection day. I was doing it on Wednesdays but I think I'll be doing it on Sunday now. It's just better because I'm able to enjoy the weekend before doing the injection and having the hangover feeling for a few days.
 
That sounds like it might be an idea, you may actually enjoy your time off more. :)
I did the injection yesterday morning and had body pain and a migraine for the better part of the day. I slept as much as I could last night and also took a nap and the hangover seems to be almost over. This time, it didn't last as long. I've been taking folate instead of folic acid and I think that's what is helping. The folic acid seems to cause migraines whereas the folate (the natural form) keeps the headaches from happening. I'm glad I figured out the problem.
 
I saw my new rheumatologist today and she is redoing all the lab tests with some others I've never had (including thyroid antibodies, which I have never been tested for). She is also getting new xrays for my back, hands, and sacroiliac joint. I see her again on Dec. 19th. In the meantime, she told me to continue my Plaquenil and methotrexate.
 
Hi, everyone! I hope everyone is doing well! I haven't been very active lately because I've been dealing with a lot of different issues - mainly mental health issues - but I'm doing better so I thought it was time for an update.

I saw a new GI doctor and my new rheumatologist on Dec 19th and both appointments were horrible. The new GI was incredibly dismissive and rude. My PCP sent me to a new one so I could get some advice on how to handle my IBS but this woman works in the same office as my old GI (the one I was seeing the first time I posted here) and he treated me like a dog (he must have moved offices because I saw him in a different location). She asked me why I was back when I had all the testing done and there was nothing she could do for me. I explained that I already had a diagnosis and wasn't looking for further tests but my symptoms were worsening and I needed help. She gave me a prescription for a brand new medication which I later found out was not covered at all by my HMO - even with a prior authorization. During that morning, I was having really bad nausea and was close to vomiting several times but I pushed myself to go to that appointment so I could, hopefully, get some answers but it left me feeling even worse. When I left there, I felt emotional and at the end of my rope. I was tired of being dismissed by doctors when I had real symptoms. I wasn't asking for the royal treatment - just to be heard.

Anyway, I called my mom to vent and then went home to lay down because the rheumatology visit wasn't until the afternoon. By the time I had to get up, I was still feeling poorly but, again, I was hoping that the lab work would provide answers or that my rheumatologist would prescribe a course of action. Again, I left feeling defeated because 2 lab tests were missing (they were never completed by the lab company) and she wanted to repeat the urinalysis. I was so emotional that I went out to my car and sobbed. I called my mom again but I couldn't talk because I couldn't stop crying. She asked me if I was thinking about hurting myself and I said "yes," because I was, indeed, feeling suicidal.

The next day, I was admitted to the behavioral health unit of the hospital (voluntarily) at the request of my psychiatrist as she was leaving for Christmas and was worried that I would be unstable and wouldn't be able to help me. I was given two new medications which helped TREMENDOUSLY including a mood stabilizer and, a few weeks later, started intensive outpatient therapy which I am still in. It was the best thing I ever did and my mental health is still improving and I hope to be back to baseline very soon. I was so tired of feeling gloomy and hopeless. Now that my mental health is improving, I am in a much better place to take care of my physical health.

That said, I saw a brand new GI doctor this Wednesday and asked my mom to accompany me because, since what happened at the last one, I was nervous. I shouldn't have been because he was WONDERFUL! Even though I told him I have been diagnosed with IBS since 2004 or 2005, he didn't want to just accept that diagnosis and decided he'd rather do an upper GI endoscopy and colonoscopy on the same day with a pediatric scope so he could visualize as much as possible and then use a capsule endoscopy to scan the rest. I was amazed how nice he was! He was concerned about just letting it go as IBS since my symptoms were worsening and my dad has ulcerative colitis so "better safe than sorry." He also ordered bloodwork for IBD.

Tomorrow, I see my rheumatologist for the follow up and, while I am nervous, I am also happy to see that my blood work has come back so everything is in order. I am almost certain that my MTX will be discontinued because every specific antibody test is normal and I don't feel it's making any difference anyway. I'm not sure if she'll stop the Plaquenil, too, but she did mention getting me off the MTX. My new GI wants me off it if it's not helping my symptoms because it can worsen other organ symptoms like the liver and kidneys. The rheumy discussed putting me on a medication specifically for fibromyalgia since that's what I struggle with most and she mentioned Lyrica. If it will help, I'm all for trying it. I have already tried Cymbalta and Effexor in the past and SNRIs just don't seem to help but Lyrica is in a different class so it works differently.

All in all, I'm doing much better than I was a few months ago. :)
 
Hi, everyone! I hope everyone is doing well! I haven't been very active lately because I've been dealing with a lot of different issues - mainly mental health issues - but I'm doing better so I thought it was time for an update.



I saw a new GI doctor and my new rheumatologist on Dec 19th and both appointments were horrible. The new GI was incredibly dismissive and rude. My PCP sent me to a new one so I could get some advice on how to handle my IBS but this woman works in the same office as my old GI (the one I was seeing the first time I posted here) and he treated me like a dog (he must have moved offices because I saw him in a different location). She asked me why I was back when I had all the testing done and there was nothing she could do for me. I explained that I already had a diagnosis and wasn't looking for further tests but my symptoms were worsening and I needed help. She gave me a prescription for a brand new medication which I later found out was not covered at all by my HMO - even with a prior authorization. During that morning, I was having really bad nausea and was close to vomiting several times but I pushed myself to go to that appointment so I could, hopefully, get some answers but it left me feeling even worse. When I left there, I felt emotional and at the end of my rope. I was tired of being dismissed by doctors when I had real symptoms. I wasn't asking for the royal treatment - just to be heard.



Anyway, I called my mom to vent and then went home to lay down because the rheumatology visit wasn't until the afternoon. By the time I had to get up, I was still feeling poorly but, again, I was hoping that the lab work would provide answers or that my rheumatologist would prescribe a course of action. Again, I left feeling defeated because 2 lab tests were missing (they were never completed by the lab company) and she wanted to repeat the urinalysis. I was so emotional that I went out to my car and sobbed. I called my mom again but I couldn't talk because I couldn't stop crying. She asked me if I was thinking about hurting myself and I said "yes," because I was, indeed, feeling suicidal.



The next day, I was admitted to the behavioral health unit of the hospital (voluntarily) at the request of my psychiatrist as she was leaving for Christmas and was worried that I would be unstable and wouldn't be able to help me. I was given two new medications which helped TREMENDOUSLY including a mood stabilizer and, a few weeks later, started intensive outpatient therapy which I am still in. It was the best thing I ever did and my mental health is still improving and I hope to be back to baseline very soon. I was so tired of feeling gloomy and hopeless. Now that my mental health is improving, I am in a much better place to take care of my physical health.



That said, I saw a brand new GI doctor this Wednesday and asked my mom to accompany me because, since what happened at the last one, I was nervous. I shouldn't have been because he was WONDERFUL! Even though I told him I have been diagnosed with IBS since 2004 or 2005, he didn't want to just accept that diagnosis and decided he'd rather do an upper GI endoscopy and colonoscopy on the same day with a pediatric scope so he could visualize as much as possible and then use a capsule endoscopy to scan the rest. I was amazed how nice he was! He was concerned about just letting it go as IBS since my symptoms were worsening and my dad has ulcerative colitis so "better safe than sorry." He also ordered bloodwork for IBD.



Tomorrow, I see my rheumatologist for the follow up and, while I am nervous, I am also happy to see that my blood work has come back so everything is in order. I am almost certain that my MTX will be discontinued because every specific antibody test is normal and I don't feel it's making any difference anyway. I'm not sure if she'll stop the Plaquenil, too, but she did mention getting me off the MTX. My new GI wants me off it if it's not helping my symptoms because it can worsen other organ symptoms like the liver and kidneys. The rheumy discussed putting me on a medication specifically for fibromyalgia since that's what I struggle with most and she mentioned Lyrica. If it will help, I'm all for trying it. I have already tried Cymbalta and Effexor in the past and SNRIs just don't seem to help but Lyrica is in a different class so it works differently.



All in all, I'm doing much better than I was a few months ago. :)
Hi i was looking for your update, my symptoms is same as you , celiac disease + joint pain + abdominal pain + loose stool 4 time day, all colonscoopy endoscopy blood test negative, but im waiting to do capsule scopy beacuse and another colonoscopy in may.
 
I got some really good news today from my rheumatologist. My specific antibody tests all came back clear and she wants me to discontinue both the methotrexate and Plaquenil! The only one that came back abnormal was the ANA but she said some people have positive ANAs and don't develop autoimmune disorders. She said that sometimes rheumatologists like to prescribe dMARDS in order to decrease the risk of something happening but I've been on the Plaquenil for a year and haven't seen any improvement and the MTX could actually cause risks if I don't need it.

We did, however, address my fibromyalgia. Since my mental health is being cared for by another doctor, she doesn't feel comfortable using antidepressants as fibro meds (wise choice, I think) so she said Lyrica or Neurontin would be the best bet unless she conferred with my psychiatrist. Lyrica is specifically approved for fibromyalgia and I agreed to give it a go. Fortunately, my insurance covered it with no problem and I just took my first dose a little while ago. I'll be interested to see how it works. :)

So, I guess I can scratch "Undifferentiated Connective Tissue Disease" off my diagnoses! :)
 
Hi everyone,

I am twenty years old and for the last four years have been struggling with some undiagnosed issues. Basically, I have these episodes of severe nausea-- nausea where I can't even stand up straight, and have to be by the toilet. In the beginning when they first started, I would never throw up, but now I usually will. I don't have any pain during these episodes but they are still completely debilitating. I've also had issues with constipation since I was a little kid, but they come and go. Recently, they have been worse and I landed in the ER early this year. I know that constipation can cause nausea, but my nausea will come even without the constipation. Sometimes I'll have both at the same time, or just one or the other, but when I do, they're pretty bad. These kind of "flare ups" of my symptoms have lasted anywhere from about 5 days to 3 months. I've been to two doctors in the last four years and have had an EGD, HIDA scan, emptying study, and blood work. They could not find anything. The first doctor I went to didn't believe me at all, and sent me on my way saying I was completely fine. Now the doctors say that there's nothing else they can do and just want to keep trying more medication instead of finding the problem. It's been hard too because I have gone long periods (months) with little to no symptoms, so I think that it's going away, but it always comes back, almost with a vengeance. I know that these aren't typical symptoms of IBD but they are truly debilitating and seem to come and go like I've read IBD symptoms often do. Another question I had is that if I were to have a colonoscopy, would there still be evidence of IBD if I am currently not having as many problems? I just finished a two month bout with symptoms. Any recommendations or insight is appreciated! Thank you!!!!
 
Hi everyone,

I am twenty years old and for the last four years have been struggling with some undiagnosed issues. Basically, I have these episodes of severe nausea-- nausea where I can't even stand up straight, and have to be by the toilet. In the beginning when they first started, I would never throw up, but now I usually will. I don't have any pain during these episodes but they are still completely debilitating. I've also had issues with constipation since I was a little kid, but they come and go. Recently, they have been worse and I landed in the ER early this year. I know that constipation can cause nausea, but my nausea will come even without the constipation. Sometimes I'll have both at the same time, or just one or the other, but when I do, they're pretty bad. These kind of "flare ups" of my symptoms have lasted anywhere from about 5 days to 3 months. I've been to two doctors in the last four years and have had an EGD, HIDA scan, emptying study, and blood work. They could not find anything. The first doctor I went to didn't believe me at all, and sent me on my way saying I was completely fine. Now the doctors say that there's nothing else they can do and just want to keep trying more medication instead of finding the problem. It's been hard too because I have gone long periods (months) with little to no symptoms, so I think that it's going away, but it always comes back, almost with a vengeance. I know that these aren't typical symptoms of IBD but they are truly debilitating and seem to come and go like I've read IBD symptoms often do. Another question I had is that if I were to have a colonoscopy, would there still be evidence of IBD if I am currently not having as many problems? I just finished a two month bout with symptoms. Any recommendations or insight is appreciated! Thank you!!!!
I understand your struggles, for real. I was diagnosed with Irritable Bowel Syndrome by a "doc in a box" at 19 when I told him I had abdominal pain, cramping, gas, and constipation. I was also diagnosed with acid reflux at 15 which causes me pretty bad nausea. His recommendation was to use Metamucil and Phazyme. Never did help me. I learned to live with it because it wasn't too bad and didn't cause me much problems. However, my grandmother always told me that I had a gripey tummy when I was younger. I would spend about an hour in the bathroom after meals complaining of stomach upset and I never did eat anything horrible. I stopped eating gluten in 2013 which helped somewhat - it helped a lot with the urgency for a while.

Fast forward to April 2017 and I got a horrible case of diarrhea. I thought it was food poisoning but my mom didn't get sick and she ate the same thing I did. I was so sick - my body was shaking and I got the sweats. I had a pretty high fever, too, of 101 degrees Fahrenheit. I should have gone to the ER, but after the diarrhea slowed, I felt better, just very dehydrated.

After that, my gut has never been the same. I recently saw a new GI doctor who did testing on me - both blood work and upper endoscopy and colonoscopy - and the upper endoscopy showed patchy red mucosa in my lower stomach (gastritis) and the blood work showed a positive result for Saccharamyces cerevisiae antibodies which, from what the lab interpretation says, are common in people with Crohn's disease. My colonoscopy was clear so I have to wait for the biopsies. I don't see him again until the 21st of March. He mentioned doing a pill cam to check my small intestine because Crohn's can be anywhere in your digestive tract - it could be the cause of the gastritis, in fact.

Anyway, my point is, even though your symptoms are not common to IBD, it doesn't necessarily mean you don't have it. Find a good GI doctor who will listen to you like mine listens to me. I have had to see 4 bad GIs before I found this good one who actually sat down and listened to me. My primary care wrote the referral. Only you can be your advocate.
 
I understand your struggles, for real. I was diagnosed with Irritable Bowel Syndrome by a "doc in a box" at 19 when I told him I had abdominal pain, cramping, gas, and constipation. I was also diagnosed with acid reflux at 15 which causes me pretty bad nausea. His recommendation was to use Metamucil and Phazyme. Never did help me. I learned to live with it because it wasn't too bad and didn't cause me much problems. However, my grandmother always told me that I had a gripey tummy when I was younger. I would spend about an hour in the bathroom after meals complaining of stomach upset and I never did eat anything horrible. I stopped eating gluten in 2013 which helped somewhat - it helped a lot with the urgency for a while.



Fast forward to April 2017 and I got a horrible case of diarrhea. I thought it was food poisoning but my mom didn't get sick and she ate the same thing I did. I was so sick - my body was shaking and I got the sweats. I had a pretty high fever, too, of 101 degrees Fahrenheit. I should have gone to the ER, but after the diarrhea slowed, I felt better, just very dehydrated.



After that, my gut has never been the same. I recently saw a new GI doctor who did testing on me - both blood work and upper endoscopy and colonoscopy - and the upper endoscopy showed patchy red mucosa in my lower stomach (gastritis) and the blood work showed a positive result for Saccharamyces cerevisiae antibodies which, from what the lab interpretation says, are common in people with Crohn's disease. My colonoscopy was clear so I have to wait for the biopsies. I don't see him again until the 21st of March. He mentioned doing a pill cam to check my small intestine because Crohn's can be anywhere in your digestive tract - it could be the cause of the gastritis, in fact.



Anyway, my point is, even though your symptoms are not common to IBD, it doesn't necessarily mean you don't have it. Find a good GI doctor who will listen to you like mine listens to me. I have had to see 4 bad GIs before I found this good one who actually sat down and listened to me. My primary care wrote the referral. Only you can be your advocate.
Any update with your capsule endoscopy
 
Any update with your capsule endoscopy
Unfortunately, I still have not had one. The first authorization that was sent to insurance was denied in March and the second one is still pending. My GI is working on getting my case approved. Hopefully, it will be soon.
 
Top