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Yes, I'd just check with your doctors. OA is no fun, but it can be managed.

The other thing I'd ask is if the doctor thinks that the pain you're feeling is coming from the OA. A lot of people have some degree of OA and degenerative disc disease without having any symptoms - it is just part of normal aging. It could be, for example, that you have a combination of fibromyalgia and OA.

Just something else to discuss with your doctor. I'm glad she specializes in OA - that should help. Usually a pain management specialist or physiatrist is also helpful in case you need procedures like joint injections into the spine.
 
Maya142 said:
Yes, I'd just check with your doctors. OA is no fun, but it can be managed.

The other thing I'd ask is if the doctor thinks that the pain you're feeling is coming from the OA. A lot of people have some degree of OA and degenerative disc disease without having any symptoms - it is just part of normal aging. It could be, for example, that you have a combination of fibromyalgia and OA.

Just something else to discuss with your doctor. I'm glad she specializes in OA - that should help. Usually a pain management specialist or physiatrist is also helpful in case you need procedures like joint injections into the spine.
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I read in a few instances that OA and fibromyalgia can often be comorbid conditions, but that OA can cause chronic fatigue if unmanaged or not managed correctly. The spine doctor I hope to see does injections so that is a viable option - just need to see what they recommend.

In other news, my tendonitis in my right arm is flaring again. 2 nights ago, I accidentally hurt my arm by trying to support myself while getting up - my hand slipped out from under me on the carpet. Now, I have a knot near my elbow and it's very sore. It hurts every time I pick something up using that arm. I found my wrist brace and it's helping some, thankfully, by stabilizing my arm. Hopefully, it will get better in the next few days. Gotta stop hurting myself... :voodoo:
 
Right on time: another bad flare.

I get a week here and there in between and then we're off again. Just as bad every time. It's exhausting, when I get a few good weeks I think hey, this time it's probably it and it's not going to happen again. But every time it does.

The only think that helps when it's like this is to stop eating for a few days. Just stop eating and drinking anything but water altogether. And then I feel better, start eating more normally, get a few weeks and then it's back to this. It makes no sense.

I'm tempted to continue tapering off the meds to see if they contribute to this since I've had reactions to PPIs before, but also if it's NOT a reaction but something reflux-like and I stop the meds, I'll get so much worse.

I'm just desperate. Really none of the pain meds I've gotten from the hospital even touches this burning, and I've been to the ER with it twice and got sent home without any help so I'm just not up for going back there. I just have to put up with it until it goes away and it's excruciating.
 
My back has been hurting the last few days - especially today - due to the colder weather. It feels really tight and sore. I tried doing stretches but that just aggravated it further. It's definitely not happy.

Also, my stomach and intestines have been acting up the last few days. My NYR was to be healthier and my first step was getting off diet soda altogether. Ever since weaning off, I've had a LOT of GI symptoms, including nausea, diarrhea, gas, and cramping. Zofran has come to the rescue twice because I think I built up a tolerance to the Donnatal - the 5mL dose doesn't work as well anymore. Zofran, however, slows everything down, so then I'm left to deal with constipation. I don't regret getting off diet soda and artificial sweeteners but it sucks dealing with the consequences. I switched to tea, instead, since tea has a lot of antioxidants and anti-inflammatory benefits. :)
 
Well, Vitamin D was 11. Other labs all ok. Does anyone have periods where they have clear to slightly stool stained mucous and lots of gas? I have this every so oftern, I think I’ve had an accident but it’s just mucous. No pain but if I remember correctly last time it started off two weeks and a loss of 11 lbs. fun times. Colonoscopy,y is scheduled in about two weeks. And found out he’s using a Peds scope on me. Nurse said that means based on clinical records the likelihood is there for issues. My ileum is enlarged per CT this summer when I was sick after allergy to peaches. Shut me down almost completely for about two weeks.
 
Welcome Farmgirl,

I used to have excess mucous and gas with loose bowel movements when flaring. It usually meant something was inflamed. Good luck with everything and be sure to keep us updated.


Best regards,

Chris
 
Thanks Chris. Yes, that seems to be the rule. Abdominal pain, generally very tired, aching joints, then the mucous and or bloody mucously stool or two. Oh and mouth sores. Today was bloody mucousy stool day and abdominal pain day. I appreciate the reply and hope your day was good, thanks!
 
Hi everyone!

I hope you're all doing as well as you possibly can. A brief update on my current health: still having pain and burning in the chest/espohagus. Nothing really seems to help other than not eating. It comes and goes, and the good days are pretty good. The bad days really suck. I've also developed an abscessed tooth so I'll be having surgery for that in a month, just what I wanted even more surgery :p

Been having lower abdominal pain as well, some attacks of terrible cramping. I suspect bowel adhesions from the operation, but I'm just waiting and keeping an eye on it hoping it resolves on its own.

Incision site is healing well, though the whole affair has left me with a really terribly large scar. It's widened significantly as well and the marks from staples remain and are here to stay, I think. I'm starting to make peace with it though, sometimes I even like it. Call it my war wound :p
 
Hi everyone. I didn’t have internet for a couple weeks, so I had a lot of reading to do. Now I’m all caught up on everyone’s posts, but I’m pretty sure I forgot basically everything that was said....

Leslie - Welcome! It sounds like you’re close to getting some answers. I sure hope so! I’m so glad you’ve found a doctor who wants to help you. Keep us posted!

MissLeopard - You wrote this a while ago, but it’s what stuck out to me.....you mentioned that you were at church and you felt a sudden, intense fatigue/tiredness. That happens to me sometimes! And not only is it uncomfortable and sucky, but I think it’s kind of scary too. I’ve been sooo tired lately. I’m always tired, but it’s been even worse lately. If I don’t get like 9 hours of sleep, I can’t function and I have to take a nap. And even when I do get 9+ hours, I’m still so tired! My body has been hurting more too.

Izzie - It’s just one thing after another with you! I’m so sorry. I don’t even know what to say. I want to say that I hope things get better for you soon, but sometimes I get annoyed when people say stuff like that to me. So just know I’m thinking of you!

There’s nothing new to report for me. Doctors suck. Being sick sucks. Just the usual....
 
akgirl said:
MissLeopard - You wrote this a while ago, but it’s what stuck out to me.....you mentioned that you were at church and you felt a sudden, intense fatigue/tiredness. That happens to me sometimes! And not only is it uncomfortable and sucky, but I think it’s kind of scary too. I’ve been sooo tired lately. I’m always tired, but it’s been even worse lately. If I don’t get like 9 hours of sleep, I can’t function and I have to take a nap. And even when I do get 9+ hours, I’m still so tired! My body has been hurting more too.
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It is scary! I was just sitting in the pew listening to the priest preach his homily and this overwhelming sense of fatigue hit me HARD. I was serving as communion minister that day, too, and was scared of serving because I was so out of it. :(

Anyway, my appointment with the rheumatologist is tomorrow and I finally got the blood work done yesterday, so it's not going to be ready by my appointment, unfortunately. I'm not sure if she'll want me to come back in or we can discuss the results over the phone, but I'll find out. I'm going to ask about pain management options for my osteoarthritis and fibromyalgia. I'm also going to ask about a possible skin/mucous membrane biopsy to completely rule out Sjogren's syndrome. During my reading about rheumatoid arthritis, it came up as a possibility and I have quite a few of the symptoms. I think someone here was diagnosed with it? If you're reading this, how did you get your diagnosis? I'm wondering if it's a possibility due to having these symptoms that match:

  • GERD
  • Chronic dry cough
  • Joint/muscle pain
  • Dry eyes
  • Dry nose (bled a lot as a kid/still get nosebleeds)
  • Dry skin (I put lotion on ALL the time and still feel dry
  • Dry mouth (have gotten 2 cavities because of it and have receding gums)
  • Voice hoarseness
  • Fatigue

It also says it can affect the GI tract and cause constipation issues and GERD/acid reflux. I know most of the blood work was done for autoimmune disorders but I read that you can be sero-negative and still have an AI disorder.
 
Sjögren s has a specific blood tests that looks for specific Sjögren antibodies
Different then regular RA bloodwork
You can have all of the above and only have sicca Syndrome
Basically dry membranes but not Sjögren
Treatment
See eye specialist for eyes- restasis or artificial tears
Sour candy for the mouth /special mouthwash tooth paste

That’s it no meds needed

Ds has sicca but does not have Sjögren
The large majority of autoimmune disorders all over lap with symptoms

Good luck with your appt
 
MissLeopard83 said:
It is scary! I was just sitting in the pew listening to the priest preach his homily and this overwhelming sense of fatigue hit me HARD. I was serving as communion minister that day, too, and was scared of serving because I was so out of it. :(

Anyway, my appointment with the rheumatologist is tomorrow and I finally got the blood work done yesterday, so it's not going to be ready by my appointment, unfortunately. I'm not sure if she'll want me to come back in or we can discuss the results over the phone, but I'll find out. I'm going to ask about pain management options for my osteoarthritis and fibromyalgia. I'm also going to ask about a possible skin/mucous membrane biopsy to completely rule out Sjogren's syndrome. During my reading about rheumatoid arthritis, it came up as a possibility and I have quite a few of the symptoms. I think someone here was diagnosed with it? If you're reading this, how did you get your diagnosis? I'm wondering if it's a possibility due to having these symptoms that match:

  • GERD
  • Chronic dry cough
  • Joint/muscle pain
  • Dry eyes
  • Dry nose (bled a lot as a kid/still get nosebleeds)
  • Dry skin (I put lotion on ALL the time and still feel dry
  • Dry mouth (have gotten 2 cavities because of it and have receding gums)
  • Voice hoarseness
  • Fatigue

It also says it can affect the GI tract and cause constipation issues and GERD/acid reflux. I know most of the blood work was done for autoimmune disorders but I read that you can be sero-negative and still have an AI disorder.
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That list of symptoms is so me. I have all of the above.
 
I feel terrible. I just have heartburn 24/7 and nothing works even a little bit, which leads me and my doctor to believe it's not heartburn but something else. My surgeon is back from holiday now so we'll be starting tests and another evaluation soon. I find myself feeling very concerned about what thehy might find, but also worried they won't find anything.
 
Oh gosh Izzie. I’m so sorry to read how bad things are. Most surgeons here don’t like to diagnose as much as they like to cut things out. Is yours helpful with figuring things out? It can be so difficult to be an “unusual” patients and most doctors aren’t that skilled at the puzzle of diagnosis. There’s a great book by a doctor named Lisa Sanders called “Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis”. She says the most important clinical tool is the patient history. So I’m thinking that an answer about your GI problems is lying somewhere in the story of your health. Can you write down every single health-related thing that has happened in your life? Plus all treatments? Of course you’ve probably already done that. You really need some sort of relief. When they biopsied your esophagus what did they find? I’m sorry I can’t remember. Someone has to be able to help. Now that your surgeon is back I’m hoping you will get some answers.
 
Honestly I can't get my surgeon to sit still long enough to listen to my current symptoms, let alone my whole history :p

And that's the thing, they never did biopsies. I said I wanted them because of suspected EoE (my old GI doctor suspected it) but my surgeon didn't take any and was very arrogant when I asked why not and could I have EoE. He claimed he had enough experience to see it. Which, of course, it can't always be seen. You need biopsies. I will be insisting on them this time around. I'm debating looking elsewhere for treatment, but my surgeon has been pretty good. It's parts of the other staff at my current hospital that I'm not so fond of.

My last visit with the surgeon was good, however, and he definitely believes me and has a few theories. When I talk to his terrible nurse though she clearly doesn't believe I'm in any actual pain, and suggests stupid things like taking walks "to get my mind off things".

My surgeon is very busy though, and appointments are scarce. I managed to get a phone appointment, so hopefully he'll call me next week or the week after... I'm guessing the next step will be a repeat endoscopy. I do have a few decent days here and there in between these flares but they're closer and closer together and it's taking a huge toll on my mental health as well. I'm not even 30 years old yet, I should've graduated school 2 yeard ago, but my life is just passing me by while I sit alone in my apartment all day every day. It's not exactly the life you dream of :p

Things have changed since surgery and I'm hoping they continue to change for the better. I can't imagine living the rest of my life like this...
 
Izzie have you thought about sarcoidosis? It’s unusual for it to affect the GI tract and/or esophagus, but I thought it might be worth a look.

And I cannot believe they didn’t take biopsies! I wonder sometimes what doctors are thinking when they fail to do basic testing. I hope you can string a few good days together soon. It’s really tough when you have so few of them.
 
My follow-up appointment with my rheumatologist was yesterday morning and was very interesting. I had the blood work done 3 days ago and wasn't sure if the results would be back but some of them were - the rest were apparently still in processing. What she did get back showed normal except for low hemoglobin (which means I'm anemic), low B-12 (less than 500 but still in the low normal range), and low Vitamin D (29 which is below normal of 30 or more). All of these factors can cause fatigue and body aches/pains so I'm so glad to know that some of it can be reversed! I went to the natural food store after work last night and used my gift card from Christmas to buy Hema-Plex (a natural iron supplement that is gentle and contains other vitamins) and Now Foods Ultra Liquid Vitamin B-12. I also ordered a high-quality Vitamin D3 supplement on Amazon that contains K2 for maximum absorption. I should get it in the mail tomorrow.

Some of the blood work that we are still waiting on is for inflammatory tests so it is too premature for a diagnosis but my rheumatologist is still thinking fibromyalgia. She did another physical exam yesterday and, due to the cold weather, I had more tender pressure points than last time. I'm hoping with the supplementation, the fibromyalgia will improve and my pain won't be so bad. She also switched my muscle relaxer from Flexeril to Norflex. She asked how the Flexeril was working for me and I can only take a half of 5mg tablet or I'm incredibly groggy the next morning. I haven't taken the Norflex yet because my pharmacy is out of stock. She said I should be able to take it during the daytime without feeling tired, but I'm not planning to take it other than nighttime until I know how it makes me feel. :)
 
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My doctor got the rest of my test results back and sent them to me by the patient portal yesterday. It shows that I may have Systemic Lupus Erythematosus based on the IFA pattern (homogenous) and ANA findings but I won't know more until I see her again on February 15th. My mom and I did a LOT of research last night and it would explain A LOT of my symptoms. Of course, I'm pretty sure she's going to be running more tests to verify the diagnosis, but that's what it says on the lab report. There are other antibodies I have not been tested for yet, so she'll probably want to run those. I've also read that ANA by itself does not automatically mean SLE but it's definitely probable (95-100%). The antibodies tests she already ran show that I'm negative for scleroderma and Sjogren's but you can be sero-negative and still have the disorder. I'm at high risk for autoimmune disorders due to my family history (plus, I already have Celiac and where there is one diagnosis, you have a higher risk of developing another). :(
 
My daughters both had positive ANAs, homogenous pattern. No SLE. Did they check antidsDNA antibodies? That is a more specific test for SLE.

One of my daughters does have positive anti-dsDNA antibodies and we are watching her closely to make sure she does not develop SLE (and if she does, we want to catch it early). But so far, even with positive ANA and positive anti-dsDNA antibodies, her rheumatologist feels that she does not have SLE yet.

You can have a positive ANA and not have SLE - a certain population does have a positive ANA for no good reason. So I wouldn't completely panic or get too worried till you have more tests done and more info from the doctor.

For those who do have SLE, it is true that almost all cases have a positive ANA. It is pretty rare to have SLE and not have a positive ANA.
 
Maya142 said:
My daughters both had positive ANAs, homogenous pattern. No SLE. Did they check antidsDNA antibodies? That is a more specific test for SLE.

One of my daughters does have positive anti-dsDNA antibodies and we are watching her closely to make sure she does not develop SLE (and if she does, we want to catch it early). But so far, even with positive ANA and positive anti-dsDNA antibodies, her rheumatologist feels that she does not have SLE yet.

You can have a positive ANA and not have SLE - a certain population does have a positive ANA for no good reason. So I wouldn't completely panic or get too worried till you have more tests done and more info from the doctor.

For those who do have SLE, it is true that almost all cases have a positive ANA. It is pretty rare to have SLE and not have a positive ANA.
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Not 100% sure what labs were included for the ANA comprehensive screening. I've had an ANA test before back in 2016 and it was negative, so I'm hoping this is just a false-positive. If I get the diagnosis of SLE, I'll be upset, but I'll also be glad to have answers. Of course, I'm hoping that I don't have an other autoimmune disorders (besides Celiac). I'll have a lot of questions for the rheumatologist when I see her again next month. :)
 
This is a great site that explains the blood work and how SLE is diagnosed: https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/ana-testing/

The antinuclear antibody (ANA) test is commonly used to look for autoantibodies that attack components of your cells’ nucleus, or “command” center, triggering autoimmune disorders like lupus. 95% of people with lupus test positive for ANA, but a number of other, non-lupus causes can trigger a positive ANA, including infections and other autoimmune diseases. The ANA test simply provides another clue for making an accurate diagnosis.

For patients with a positive ANA, more tests are usually performed to check for other antibodies that can help confirm the diagnosis. This series of tests, commonly called an ANA panel, checks for the following antibodies: anti-double-stranded DNA, anti-Smith, anti-U1RNP, anti-Ro/SSA, and anti-La/SSB. Some laboratories also include other antibodies in their panel, including antinucleoprotein, anticentromere, or antihistone.

Doctors use these supplemental tests in conjunction with a person’s clinical history to help diagnose or rule out other autoimmune disorders. Specifically, they look for signs of inflammation, active lupus, active autoimmune disease, and kidney problems.
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And this site explains the other antibodies found in Lupus: https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis. Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus
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The anti-double-stranded DNA antibody (anti-dsDNA) is a specific type of ANA antibody found in about 30% of people with systemic lupus. Less than 1% of healthy individuals have this antibody, making it helpful in confirming a diagnosis of systemic lupus. [The absence of anti-dsDNA, however, does not exclude a diagnosis of lupus.] The presence of anti-dsDNA antibodies often suggests more serious lupus, such as lupus nephritis (kidney lupus).
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Maya142 said:
This is a great site that explains the blood work and how SLE is diagnosed: https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/ana-testing/

And this site explains the other antibodies found in Lupus: https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/
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Those are from several of the websites I looked at. I must have looked at dozens - that's how studious I am. I'm just trying to get as much education as I can before my appointment on Feb. 15th so I can ask questions. If nothing else is done after this appointment, then I may ask for a second opinion to make sure. Seeing my grandmother and aunt deal with autoimmune disorders makes me realize that it's important to treat it as early as possible to prevent complications. :)
 
Well, if your rheumatologist hasn't yet tested for anti-dsDNA and other antibodies, I would guess that is the next step.

SLE diagnoses are tricky and do take time. With my daughter, they wanted to just wait and watch, despite the abnormal blood work and malar (butterfly) rash, which she got after being in the sun.

I also would not get stuck on one diagnosis. Autoimmune diseases tend to have overlapping symptoms. Symptom wise, for example, fatigue and joint pain could be SLE or RA or fibromyalgia. A lot depends on the physical exam and whether joint inflammation is found. The doc may do ultrasounds to see if there is any inflammation in your joints.

For my daughter, they did a lot of additional blood work and an echocardiogram to check her heart.

We perform a thorough medical history, with particular attention to the following symptoms and signs:

●Constitutional symptoms such as fever, fatigue, lymphadenopathy, or weight loss

●Photosensitive skin lesions such as a malar rash

●Painless oral or nasal ulcers

●Hair loss that is patchy or frontal/peripheral

●Raynaud phenomenon

●Joint pain or swelling which can be migratory or symmetrical

●Dyspnea or pleuritic chest pain suggestive of serositis

●Chest pain suggestive of pericarditis

●Lower extremity edema

●Neurologic symptoms such as seizures or psychosis

●Recurrent miscarriages (see "Pregnancy in women with systemic lupus erythematosus")

We also ask about exposure to medications associated with drug-induced lupus (eg, hydralazine and others) (see "Drug-induced lupus"). A complete physical examination is indicated, since any organ system can be involved in SLE.

Pertinent physical examination findings include the following:

●Skin lesions consistent with a malar rash or discoid lesions

●Scarring or nonscarring patchy alopecia

●Oral or nasopharyngeal ulcers

●Polyarticular arthritis which is often symmetric

●Subluxation at the metacarpal phalangeal (MCP) joints and rheumatoid-like swan neck deformities in the hands may be observed, which are usually not reducible

●Decreased or abnormal breath sounds may indicate a pleural effusion, pneumonitis, or interstitial lung disease

●Lower extremity edema and hypertension may be due to renal involvement
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https://www.uptodate.com/contents/d...sis-of-systemic-lupus-erythematosus-in-adults
 
Maya you’re so very well informed and I like to read your posts as you write very articulately!
Miss leopard, it’s easy to develop symptoms or signs purely from reading something, this week I’ve self diagnosed at least 4 diseases which I do not have, whilst looking at 1 I do have!
I don’t mean this to be offensive in anyway, but over the year you have become attached to various illness and I think ‘dr google’ whilst useful, may not be helping you.
Being educated is great, however self diagnosing can put you on the wrong foot with your doctors, therefore they will see a health anxiety, and may dismiss symptoms of clinical importance.
My dad has renal failure, underwent every test going, he was diagnosed, undiagnosed. Diagnosed, undiagnosed with lupus. Currently we still don’t know and he’s had alsorts of genetic tests done.
Blood tests don’t mean you DO or will develop an illness, and coeliacs doesn’t put you in line for anything either.
Please try and not research and link onto illnesses, as a new name for this is ‘cyberchondria’ and I guess it makes doctors make judgements.
The info on your tests also indicates women especially can have mildly raised results.
Take care, and discuss with your specialist in due course
Womble
 
Hi everyone.

So this is going to be a bit of a whine, I apologize in advance.

It seems I have bowel adhesions that are causing pain and symptoms. The pain in and of itself is not debilitating but the anxiety that accompanies it definitely is. My grandfather has had multiple bowel obstructions and nearly died from them more than once, so my anxiety about possibly having adhesions and constantly worrying about obstruction or strangulation has got me all stressed out.

My dysphagia has gotten worse since my fundoplication surgery so I'm basically living off of crackers (which for some reason goes down just fine) and mushy things. Anything too acidic still sets me off. I keep getting invited to fun social events that all revolve around food. Brunches, dinners etc. If anyone else has any tips on how to join in and disclose your illness without being a total Debbie Downer - please do share!

Womble - you make such a good point that I definitely need to consider! My symptoms are definitely always real; but "Dr Google" tends to put me over the top re: stress. My suspected bowel adhesions didn't seem very scary until I googled them and found out they can lead to obstruction or strangulation, which in turn can kill you. Having access to information is great... until you go overboard. It's something I've worked on extensively in CBT counselling. Looking for information is a natural response to stress and uncertainty, but it can become a very destructive coping mechanism. It definitely has been that for me.
 
I know sometimes I can get carried away with internet research but I think since my anxiety has been improved in the last few months, I've shown considerable restraint in regards to being anxious about health problems I may or may not have. For over a decade, I was without health insurance due to being unemployed and withdrawn from school due to depression/anxiety issues but they are so much more controlled now. Everyone has remarked in my family as well as my doctor that I've improved. I honestly don't say I have something unless a doctor agrees and tests confirm my suspicions. So, while tests show abnormal ANA results, I'm not saying I have lupus or any other autoimmune disease until my rheumatologist tells me that's what I have. I definitely don't want an autoimmune illness because they cannot be cured, but I also want to be smart and get it treated in the early stages so I can be as healthy as possible.

I think the reason why I get carried away now is because of stigma attached to my chronic illnesses. I have had really good doctors and I have had really BAD doctors who treated me as though I am a hypochondriac simply because I have a history of depression and anxiety (my first GI doctor was in that category). I feel validated by the fact that someone is taking my symptoms seriously because I know something is wrong. I am my own biggest advocate. If it seems like I'm attached to one problem, then I apologize - that's not what I do in real life. I don't know why it comes off as such here. Internet is a funny thing. :)
 
I think what Womble is trying to say is not to do too much research, since the overlapping symptoms of autoimmune diseases make it hard to determine what is going on. For example, MissLeopard83, you were sure you had Gastroparesis, and now you said you have all the symptoms of Sjogren's and now you are researching Lupus. Before that you were researching osteoarthritis and also said your symptoms match CFS/ME.

I'm not saying anything of this is an awful thing to do - just that it can create MORE anxiety. It's absolutely natural to want to know what is wrong but the fact is that sometimes if you focus on what is wrong, you feel worse. You become too aware of your symptoms.

Sometimes it can help to take a step back. But I agree, at the same time, you have to advocate for yourself and you have to do research to do that.

I guess what I'm trying to say is that there is a very fine line between too much research which causes anxiety and not enough which does not help you advocate for yourself!

You have certainly dealt with a lot and are doing a great job advocating for yourself. I hope the rheumatologist is able to give you some answers at your next appt.
 
Maya142 said:
I think what Womble is trying to say is not to do too much research, since the overlapping symptoms of autoimmune diseases make it hard to determine what is going on. For example, MissLeopard83, you were sure you had Gastroparesis, and now you said you have all the symptoms of Sjogren's and now you are researching Lupus. Before that you were researching osteoarthritis and also said your symptoms match CFS/ME.

I'm not saying anything of this is an awful thing to do - just that it can create MORE anxiety. It's absolutely natural to want to know what is wrong but the fact is that sometimes if you focus on what is wrong, you feel worse. You become too aware of your symptoms.

Sometimes it can help to take a step back. But I agree, at the same time, you have to advocate for yourself and you have to do research to do that.

I guess what I'm trying to say is that there is a very fine line between too much research which causes anxiety and not enough which does not help you advocate for yourself!

You have certainly dealt with a lot and are doing a great job advocating for yourself. I hope the rheumatologist is able to give you some answers at your next appt.
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That’s spot on again,
I honestly have had health anxiety myself and I understand why miss leopard, you feel having your symptoms given a diagnosis is so important, I really do understand, but don’t let it become you.
 
Izzie said:
Hi everyone.

So this is going to be a bit of a whine, I apologize in advance.

It seems I have bowel adhesions that are causing pain and symptoms. The pain in and of itself is not debilitating but the anxiety that accompanies it definitely is. My grandfather has had multiple bowel obstructions and nearly died from them more than once, so my anxiety about possibly having adhesions and constantly worrying about obstruction or strangulation has got me all stressed out.

My dysphagia has gotten worse since my fundoplication surgery so I'm basically living off of crackers (which for some reason goes down just fine) and mushy things. Anything too acidic still sets me off. I keep getting invited to fun social events that all revolve around food. Brunches, dinners etc. If anyone else has any tips on how to join in and disclose your illness without being a total Debbie Downer - please do share!

Womble - you make such a good point that I definitely need to consider! My symptoms are definitely always real; but "Dr Google" tends to put me over the top re: stress. My suspected bowel adhesions didn't seem very scary until I googled them and found out they can lead to obstruction or strangulation, which in turn can kill you. Having access to information is great... until you go overboard. It's something I've worked on extensively in CBT counselling. Looking for information is a natural response to stress and uncertainty, but it can become a very destructive coping mechanism. It definitely has been that for me.
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I had to go cold turkey with seeing my doctor and I also did cbt. Even though I still read things and can see I have every symptom,I try to let the anxiety go and move on.

I am sorry that you’re still unwell, and can only offer a ‘thinking of you’, no words of any wisdom.
 
I think it can be really hard to figure out how to stay informed and advocate for yourself after you’ve been told you’re just imagining things. Before I was diagnosed with celiac disease and while I was in significant pain my GP’s assistant suggested it was “all in my head”. I thought it was bizarre and paid no real attention to her and during an upper GI the following week they found an erosion that almost perforated my duodenum. Since I had a quick diagnosis following that “in your head” comment I didn’t have to wade through the no man’s land of the undiagnosed. I was lucky. At that time I wasn’t taking anything for depression and/or anxiety but I am now, and I had an episode with a hospitalist a few years ago who decided my wildly fluctuating heart rate was the result of a panic attack; my cardiologist confirmed I had a virus. If I’d had to deal with only the hospitalist I might have thought I was losing my mind.

So I appreciate your efforts to help figure out what’s going on with your body, Miss Leopard. I can tell that you are trying to augment your understanding of what might be wrong, not fitting yourself into something so you can “have it”. It can be very demeaning to have a doctor fob off very real symptoms and problems because they can’t be bothered to think creatively (one of my neurologists told me I had migraines because I was doing too much for my children who were 3, 5, and 7, never mind that my headaches became chronic after my pregnancies and were clearly inflammatory in origin) about potential conditions. If I were you I might talk to my doctor about reading up on various things. The new doctors you have seem very open to patient ideas and they might help direct what you read on the web. Dealing with pain is especially difficult these days because it’s not really treated without a concrete diagnosis, but there is still so much we don’t about how the immune system both keeps us healthy and conversely makes us sick.
 
Jabee said:
I think it can be really hard to figure out how to stay informed and advocate for yourself after you’ve been told you’re just imagining things. Before I was diagnosed with celiac disease and while I was in significant pain my GP’s assistant suggested it was “all in my head”. I thought it was bizarre and paid no real attention to her and during an upper GI the following week they found an erosion that almost perforated my duodenum. Since I had a quick diagnosis following that “in your head” comment I didn’t have to wade through the no man’s land of the undiagnosed. I was lucky. At that time I wasn’t taking anything for depression and/or anxiety but I am now, and I had an episode with a hospitalist a few years ago who decided my wildly fluctuating heart rate was the result of a panic attack; my cardiologist confirmed I had a virus. If I’d had to deal with only the hospitalist I might have thought I was losing my mind.

So I appreciate your efforts to help figure out what’s going on with your body, Miss Leopard. I can tell that you are trying to augment your understanding of what might be wrong, not fitting yourself into something so you can “have it”. It can be very demeaning to have a doctor fob off very real symptoms and problems because they can’t be bothered to think creatively (one of my neurologists told me I had migraines because I was doing too much for my children who were 3, 5, and 7, never mind that my headaches became chronic after my pregnancies and were clearly inflammatory in origin) about potential conditions. If I were you I might talk to my doctor about reading up on various things. The new doctors you have seem very open to patient ideas and they might help direct what you read on the web. Dealing with pain is especially difficult these days because it’s not really treated without a concrete diagnosis, but there is still so much we don’t about how the immune system both keeps us healthy and conversely makes us sick.
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Thank you. I am absolutely disgusted by doctors who fob off symptoms to anxiety - one of the main reasons I stopped seeing my first GI doctor and first ENT (both were total jerks who didn't even want to listen). I know what anxiety feels like and I know that my physical symptoms are very real. Now that my depression and anxiety are well controlled, I know what was mental health related and what is left over is stuff that needs to be taken care of.

I do feel fortunate that my rheumatologist is very much based in a holistic approach - she cares about the mind, body, and spirit - and doesn't just throw pills at you. She cares about what is going on with you because problems at work and home can manifest as physical symptoms and exacerbate chronic illnesses. That's why psychology is so fascinating to me (I'm planning to become a Clinical Mental Health Counselor in the very near future; already applying to grad school for Fall 2018). I think it's absolutely amazing that our minds and bodies are either our best friends or worst enemies. I have learned so much about myself from CBT counseling and I want to give back to others because of it. :)
 
I think Jabee explained that perfectly! It’s sooo frustrating to know that something is physically wrong and have doctors (and other people) basically tell you that you’re crazy. If you don’t do research and advocate for yourself, you probably won’t be getting better. A lot of illnesses have similar symptoms, but that doesn’t mean that you shouldn’t consider each of them. You never know if some research you discover might be the key to getting better. I do agree with Maya though, when she said that there’s a fine line between researching enough to advocate for yourself and researching too much that it causes anxiety.

With that being said, I feel a little defensive. MissLeopard, I don’t agree that you’ve been finding random illnesses on Google and saying you have them. I think your doctor has suggested something or a test has showed a possibility of something, and you have done research to figure out if you think it could be a possibility. Who doesn’t do that? I mean, we’re all on this undiagnosed crohn’s forum, so at some point we all thought we had crohn’s, even though we may not. MissLeopard, it sounds to me like you probably do have some type of autoimmune disease (in addition to celiac). There is clearly something going on inside of you, and it is clear to me that it is not all in your head or anything. I hope you get answers soon! By the way, I want to be a counselor as well! I was about halfway through grad school when I had to quit due to my illness, but my main goal is to get better so I can go back. Also, my doctor told me the other day that there’s a huge need for counselors who understand chronic illness and can help those going through exactly what we are. And we’d be perfect because we TRULY understand!

Izzie, I’m so sorry that things still aren’t better. And I don’t have any advice for you about social gatherings. It’s frustrating that food is such a big part of hanging out. Whenever my family is celebrating a holiday together, food is always involved. I usually don’t eat, and my sister usually brings her own food because she’s on a special diet. I try telling them that we don’t need food to hang out, but they never listen haha. Also, I often get into the Google trap where researching something gives me extra anxiety. I’m about to start taking some new herbal supplements (5 of them!), and I decided that ignorance is bliss so I’m not going to research side effects. I’d rather just not know!
 
akgirl said:
I think Jabee explained that perfectly! It’s sooo frustrating to know that something is physically wrong and have doctors (and other people) basically tell you that you’re crazy. If you don’t do research and advocate for yourself, you probably won’t be getting better. A lot of illnesses have similar symptoms, but that doesn’t mean that you shouldn’t consider each of them. You never know if some research you discover might be the key to getting better. I do agree with Maya though, when she said that there’s a fine line between researching enough to advocate for yourself and researching too much that it causes anxiety.

With that being said, I feel a little defensive. MissLeopard, I don’t agree that you’ve been finding random illnesses on Google and saying you have them. I think your doctor has suggested something or a test has showed a possibility of something, and you have done research to figure out if you think it could be a possibility. Who doesn’t do that? I mean, we’re all on this undiagnosed crohn’s forum, so at some point we all thought we had crohn’s, even though we may not. MissLeopard, it sounds to me like you probably do have some type of autoimmune disease (in addition to celiac). There is clearly something going on inside of you, and it is clear to me that it is not all in your head or anything. I hope you get answers soon! By the way, I want to be a counselor as well! I was about halfway through grad school when I had to quit due to my illness, but my main goal is to get better so I can go back. Also, my doctor told me the other day that there’s a huge need for counselors who understand chronic illness and can help those going through exactly what we are. And we’d be perfect because we TRULY understand!
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Exactly! I take everything I read with a grain of salt - I really try my hardest to not get worked up about anything because, even if I do have an autoimmune disorder, they can be treated. Modern medicine is amazing nowadays and there are good treatments out there that can benefit my quality of life. I really truly hope I do not have an AI disorder, but doctors have told me I am at risk since it runs in my family.

Anyway, I just want to feel better - that's my true goal. I'm hoping that whatever I have - autoimmune or not - I'm able to find the treatment that works best for me. It might take some trial and error, but it's worth it in the end if I feel better enough that I'm not taking so much time off work and away from activities.

Also, just as an update, I have been taking the Vitamin D, B12, and Iron supplements everyday and have noticed that my sleeping is getting better (probably due to the Vitamin D - it's not actually a vitamin but a hormone). I'm getting sleepy around 8:30pm every night and not having so much trouble with insomnia. :)
 
Interesting discussion regarding the mental aspect of illness. I agree with you akgirl that research is a totally logical response. It certainly has been mine. The only thing I've found is that at times I've gone overboard and the "research" or fact checking or "trying to figure it out" has caused me additional stress. A tip I got from my therapist was to allocate a certain bit of time each day to the "research" or thinking about my illness. As much as I felt was necessary - maybe ten minutes a day when things were calm, or an hour when things were not so calm - and then to put it out of my mind for the rest of the time. That way I'll get the information that I need without feeling consumed by thoughts of it for my whole day. I've found it helpful.

Meanwhile, I've had another reaction to my PPIs. Same old reaction with extreme dry mouth and eyes and difficulty swallowing (probably due to the dryness). Sjogrens has been suggested in the past but it's always been tied to my medications so I've dismissed that. Not sure what's going on now though since I'm on such a low dose (40 mg/day and 20 mg/day every other day, was about to make the switch to 20 mg/day all days) that I'm not sure why I'd suddenly have a reaction now. Maybe it's the every other day thing my body doesn't know how to handle. I'm probably going to have to stop completely now. This reaction is NOT fun and if it is the meds I'm keen on coming off them.

If it doesn't disipate I will ask for testing re: Sjogrens because this has been happening on and off for the past two years now... Usually switching meds made it stop within 24 hours so if I go off the meds it should go away pretty fast...
 
Yesterday, I got some horrible news. I was called into my supervisor's office and the HR director was there as well. It was explained to me that they are doing restructuring and modifying certain jobs as well as eliminating jobs and, unfortunately, my job was eliminated. My responsibilities are going to be absorbed by another staffing coordinator in a different department. It came as a huge shock - I've been there 2 years and it was my first job after I graduated with my Bachelor degree. I will admit that I was getting a bit burnt out because the job is very stressful - especially when you have multiple callouts and are having difficulty finding replacements. I was, however, planning to stay until I found another job because I have bills to pay and need health insurance (thankfully, they extended my insurance thru February and then I can use COBRA).

Anyway, I was given 2 weeks' pay in lieu of notice and told that I could apply for unemployment, which they would approve. I am already job hunting now but I don't think the shock of the event has fully sunk in and I fear my depression might return so I made an appointment with my psychiatrist on Monday morning.
 
A tip I got from my therapist was to allocate a certain bit of time each day to the "research" or thinking about my illness. As much as I felt was necessary - maybe ten minutes a day when things were calm, or an hour when things were not so calm - and then to put it out of my mind for the rest of the time. That way I'll get the information that I need without feeling consumed by thoughts of it for my whole day. I've found it helpful.
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Izzie, that is an excellent tip - that's exactly what I mean. You want to be a well-informed patient, but too much research and it will consume your whole life.

My daughter did a chronic pain program and that is one of the rules they teach both parents and kids. Parents are not supposed to ask constantly "How are you feeling?" because it draws attention to the pain. Kids are supposed to keep themselves distracted and busy because the more you sit and think about it, the worse you will feel.

That is not to say the pain isn't there - it is there and it is very real. These kids have everything from chronic migraines, to chronic musculoskeletal pain to fibromyalgia to visceral hyperalgesia (chronic abdominal pain). For most of them, it's not going to go away, so they have to learn how to live with it and how to live WELL with it.

It has been a huge help for my daughter and has completely changed the way we think about chronic illness and chronic pain.
 
Izzie said:
So sorry to hear about your job MissLeopard. Hopefully you will find something else soon!
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Thank you. I've been taking it easy ever since I got home yesterday but I've already started looking at job openings. I also filed for unemployment and plan to do my tax return very soon since I got my W-2 with my walking papers yesterday. Hoping I find something very soon - hopefully with flexible hours. With the loss of my job, I also lost FMLA which allowed me to attend doctor's appointments without penalty. :(
 
Izzie, that is a great tip! I’m so sorry you’re having more issues. I wish I had some good advice for you. That must be SO frustrating!

Maya, that totally makes sense. Sometimes I get annoyed when people ask how I’m doing or feeling, because the answer is never good. Usually I just say “crappy” or “the same” or “okay.” Distractions are definitely important! Sometimes I feel too horrible for distractions (like I can’t even watch tv, I just have to lay down in silence...and usually cry). But I do try to distract myself when I can. Do you have any chronic health issues yourself? You seem like an awesome advocate for your kids! They’re lucky to have you. :)

MissLeopard, I’m so sorry about the loss of your job. It’s crazy that it happened so fast without any notice. I’m glad you’re already looking for new jobs, and I’m glad you had wanted a change anyway.....I guess this will force a change on you. I’m proud of you for knowing yourself well enough to make an appointment with your psychiatrist. That truly is great! You’re planning on starting grad school soon, right? In the fall, I think? Is there any way you can start sooner? Or maybe you can find a temporary job to hold you over until you do begin school. That’s probably easier said than done. Hopefully you can use this time off to relax and maybe enjoy the little break. :)
 
akgirl said:
MissLeopard, I’m so sorry about the loss of your job. It’s crazy that it happened so fast without any notice. I’m glad you’re already looking for new jobs, and I’m glad you had wanted a change anyway.....I guess this will force a change on you. I’m proud of you for knowing yourself well enough to make an appointment with your psychiatrist. That truly is great! You’re planning on starting grad school soon, right? In the fall, I think? Is there any way you can start sooner? Or maybe you can find a temporary job to hold you over until you do begin school. That’s probably easier said than done. Hopefully you can use this time off to relax and maybe enjoy the little break. :)
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I am still in the application stage for grad school but they only have one starting semester - Fall. I would like to start sooner, but I really want to go to this school, so I will have to wait.

Yes, I did want a change because management was making changes that I was not happy with at all. I was forced to move out of my office due to renovations and stuck in a hallway without my own space. Some of the managers were causing a lot of undue stress on me when we would experience callouts - especially whichever nurse manager was on-call. It drove me nuts. I cannot even accurately describe how crazy things were going. :(
 
MissLeopard, it’s definitely worth waiting to go to the school you want to go to. Plus, the fall with be here before you know it. That does not sound like a good workplace at all! I’m thinking a new job will actually be great for you. Keep us posted on your job seeking progress. I’m sending good vibes your way!

As I type this, I’m currently on the toilet. :( I really feel for those of you who have frequent D. Man, I forgot how horrible it is! I usually have solid BMs, and although they aren’t comfortable or a good time, they definitely aren’t like this. Yuck! My body is all messed up right now.....more than usual. My period is also 5 days late. It would basically be a miraculous conception if I was pregnant, so it’s not that! I was going to start some herbal supplements this weekend, but I decided to hold off until tomorrow. They’re supposed to help kill the specific strains of Lyme that were found in my body (I decided to start with herbs because I’m afraid of antibiotics). But herx reactions are still common with them. So I’m planning to feel worse while I take them, but I’m glad I didn’t start them yesterday, because I would’ve thought they gave me this D and I would’ve been afraid to keep taking them. So I guess there was a reason the universe told me not to start them yet......although the universe could’ve just given me better BMs instead. How weird is it that we describe our pooping habits to strangers online? Totally weird!!

Anyway, I hope everyone is doing well. Cat, are you still around? We haven’t heard from you in a while. I hope all is well!
 
Maya, that totally makes sense. Sometimes I get annoyed when people ask how I’m doing or feeling, because the answer is never good. Usually I just say “crappy” or “the same” or “okay.” Distractions are definitely important! Sometimes I feel too horrible for distractions (like I can’t even watch tv, I just have to lay down in silence...and usually cry). But I do try to distract myself when I can. Do you have any chronic health issues yourself? You seem like an awesome advocate for your kids! They’re lucky to have you.
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I have IBS and I can empathize with those struggling to get a diagnosis. When my daughters were very little (2 and 5 or so), it was really bad and I couldn't stay away from a toilet. I had to stop teaching. Had lots of tests and finally was told I had IBS. I had to give up all sorts of food and really had to work on getting stress under control. Eventually, it worked for me and my IBS has not really bothered me much since. But it took two years to get to that place.

It does still flare up when I am worrying too much - easy to do when you have two sick kids, even young adults ;)!! So I have to make a very conscious effort to keep stress under control.

MissLeopard I am sorry to hear you lost your job. I hope you are able to find something soon. Hang in there.
 
Maya142 said:
I have IBS and I can empathize with those struggling to get a diagnosis. When my daughters were very little (2 and 5 or so), it was really bad and I couldn't stay away from a toilet. I had to stop teaching. Had lots of tests and finally was told I had IBS. I had to give up all sorts of food and really had to work on getting stress under control. Eventually, it worked for me and my IBS has not really bothered me much since. But it took two years to get to that place.

It does still flare up when I am worrying too much - easy to do when you have two sick kids, even young adults ;)!! So I have to make a very conscious effort to keep stress under control.

MissLeopard I am sorry to hear you lost your job. I hope you are able to find something soon. Hang in there.
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I’m glad you were able to get your IBS under control. It sounds like it was horrible! I don’t know how you keep your stress under control with two sick kids. I can’t even imagine how stressful it would be to have one kid who was healthy. So bravo to you! :)
 
MissLeopard83 said:
My doctor got the rest of my test results back and sent them to me by the patient portal yesterday. It shows that I may have Systemic Lupus Erythematosus based on the IFA pattern (homogenous) and ANA findings but I won't know more until I see her again on February 15th. My mom and I did a LOT of research last night and it would explain A LOT of my symptoms. Of course, I'm pretty sure she's going to be running more tests to verify the diagnosis, but that's what it says on the lab report. There are other antibodies I have not been tested for yet, so she'll probably want to run those. I've also read that ANA by itself does not automatically mean SLE but it's definitely probable (95-100%). The antibodies tests she already ran show that I'm negative for scleroderma and Sjogren's but you can be sero-negative and still have the disorder. I'm at high risk for autoimmune disorders due to my family history (plus, I already have Celiac and where there is one diagnosis, you have a higher risk of developing another). :(
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So back when I was still undiagnosed (severe IBS diagnosis that I kept refusing to accept), I went to a rheumy looking for a possible SLE diagnosis after years of seeing GI's for possible crohn's. My ANA was positive, so I was assuming I would get an SLE diagnosis. Nope! My ANA was retested, and was negative, so the possibility of SLE was abandoned. I have had random positive ANA's over the years.

Also, I am so so sorry about your job. Hopefully this means you can get an even better job or a job you love even more in the long run.
 
Unfortunately, I was unable to make it to my doctor's appointment today. I woke up really early this morning with a painful back and it has persisted throughout the day - I feel like I've been hit by a freight train. I took a muscle relaxer that my rheumatologist prescribed and laid back down, but it didn't help much so I took a painkiller and I'm not able to drive when I take it because it makes me very drowsy. I plan to call and reschedule very soon. One thing to be thankful for - I have some time to give my body the rest it needs. I am looking at job openings and applying so I hope to interview soon. :)
 
I had to come off my PPIs very suddenly the other day due to a reaction (extreme dry mouth and eyes) and whoah. Gastritis and heartburn. It's rebound, so I'm trying to patient and let it pass.

Still have really bad dryness everywhere but it's started getting a bit better since stopping the PPIs. Still not sure what it is that happens, I react very suddenly and severely to the same old medication and then it fades but takes time. Sjogrens has been suggested but it's ALWAYS been connected to the medication so it's not something I'm pushing for to be tested. If it happens again once I'm off the meds I guess I'll have to agree to the tests.

Also having pretty bad dysphagia. The dryness really doesn't help with that issue... Food is definitely sticking in my esophagus for a loooong time after I eat, gets stuck over the surgery site, which gives me chest pains. This was expected though, so I'm not too upset about it. We're hoping it gets better with time, or I will have to go on a modified diet.
 
Well, I figured out what was causing my body aches this weekend. I realized I went up on an injectable medication that my endocrinologist prescribed to the highest dose. I decided to go back to the lower dose last night and I'm feeling much better - not as fatigued either. Hoping to get out of the house today and get to the store since I need a few things. :)
 
MissLeopard83 said:
Well, I figured out what was causing my body aches this weekend. I realized I went up on an injectable medication that my endocrinologist prescribed to the highest dose. I decided to go back to the lower dose last night and I'm feeling much better - not as fatigued either. Hoping to get out of the house today and get to the store since I need a few things. :)
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That is great. :)
 
ronroush7 said:
That is great. :)
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Thanks! I'm feeling much better, which is awesome. I made an earlier appointment with my rheumatologist on Thursday. I wasn't supposed to see her until 2/15 but I figure see her earlier in case I find a job and I'm not able to go to the February one (I'll have my HMO thru February before COBRA kicks in March). Hopefully, we can work on finding out what is going on.
 
Ugh, who knew dryness could be such an issue. Despite 5 days off the meds I'm still having severe issues with dry mouth/eyes (every single mucous membrane in my body is dried out, really). Went to see a Dr for it and they were at a loss. Allergic reactions usually are more severe and include symptoms like hives, and he didn't think Sjogrens usually comes on so suddenly and goes away completely for long stretches of time like this has. The theory is I'm having some kind of... PPI withdrawal kind of thing. Like side effects from coming OFF the meds. I've been fiddling with the dosage as I've tapered off and the theory is that the big change is causing this dryness. They said I need to give it about two weeks to let my body get used to being off PPIs. If it's not better by then - more tests. I'm worried because in the past as soon as I've come off the medication I believed caused the side effects, they've gone away in about 12-24 hours. It's been several days no and no sign of this going away or getting better anytime soon.

It's very annoying and I don't find that any OTC remedies like eye drops or mouth washes or anything really help at all. I've taken antihistamines a few times and they seem to ease the worst of it for a few hours or so.

It's strange, when I have these symptoms I never really have severe reflux symptoms. Usually when my saliva and tears come back, the symptoms also return. It's very strange.

I must say being off PPIs is okay so far. I definitely have gastritis and some heartburn but I thought it was going to be completely impossible, and it isn't.
 
Hello everyone!

I just posted in the 'My Story' part of the forum, but I'm probably better posting here as I too am in the undiagnosed club!

My most recent set of symptoms started 12/28. I've been really sick all month, haven't been able to go to work, or have fun. I'm not going to get into my symptoms except to say that they're classic IBD with the addition of occasional vomiting and nausea. I've been working with my GP who ruled out viral and bacterial gastroenteritis as well as c diff, and who suspects Crohn's.

This is not the first time on this merry-go-round, however. I feel like every 5 years or so I get severe GI symptoms typical of Crohn's or colitis. Twice, my symptoms have slowly resolved after surgeries (an appendectomy and a fissure repair). Once, my symptoms resolved following prednisone combined with a strict self-imposed elimination diet. In each case, by the time a colonoscopy was performed (typically ~4-6 months after symptom onset, treatment and/or surgery), there were no hints of Crohn's. I was happy in the past to be declared 'IBS' and get on with my life despite IBD-like symptoms that rumbled away in the background because when this all started for me, about 18 years ago, Crohn's was a very different diagnosis than it is today and there wasn't much you could do about it so in my mind it wasn't worth fighting for a diagnosis. Today, with biologic therapies and even the potential of stool transfers, I'm going to push much harder to figure out the underlying cause of my GI problems so I can treat it more effectively.

In the meantime, I've learned to avoid things like alcohol and coffee (although I allow myself the occasional glass of wine), and I also can't eat wheat. I have not learned to avoid overwork, microbial disease, and stress, however, and the combination of those three things are what preceded my current distress!

I'm also an autoimmune mess, with Raynaud's, RA, and Hashimoto's. Just doing my best to get on with life!

Glad to have found this forum-- my family is pretty sick of hearing me vent my anger and frustration at my illness, and they are also tired of hearing about my symptoms. Really comforting to know I'm not alone here.
 
MeggieLee said:
Hello everyone!

I just posted in the 'My Story' part of the forum, but I'm probably better posting here as I too am in the undiagnosed club!

My most recent set of symptoms started 12/28. I've been really sick all month, haven't been able to go to work, or have fun. I'm not going to get into my symptoms except to say that they're classic IBD with the addition of occasional vomiting and nausea. I've been working with my GP who ruled out viral and bacterial gastroenteritis as well as c diff, and who suspects Crohn's.

This is not the first time on this merry-go-round, however. I feel like every 5 years or so I get severe GI symptoms typical of Crohn's or colitis. Twice, my symptoms have slowly resolved after surgeries (an appendectomy and a fissure repair). Once, my symptoms resolved following prednisone combined with a strict self-imposed elimination diet. In each case, by the time a colonoscopy was performed (typically ~4-6 months after symptom onset, treatment and/or surgery), there were no hints of Crohn's. I was happy in the past to be declared 'IBS' and get on with my life despite IBD-like symptoms that rumbled away in the background because when this all started for me, about 18 years ago, Crohn's was a very different diagnosis than it is today and there wasn't much you could do about it so in my mind it wasn't worth fighting for a diagnosis. Today, with biologic therapies and even the potential of stool transfers, I'm going to push much harder to figure out the underlying cause of my GI problems so I can treat it more effectively.

In the meantime, I've learned to avoid things like alcohol and coffee (although I allow myself the occasional glass of wine), and I also can't eat wheat. I have not learned to avoid overwork, microbial disease, and stress, however, and the combination of those three things are what preceded my current distress!

I'm also an autoimmune mess, with Raynaud's, RA, and Hashimoto's. Just doing my best to get on with life!

Glad to have found this forum-- my family is pretty sick of hearing me vent my anger and frustration at my illness, and they are also tired of hearing about my symptoms. Really comforting to know I'm not alone here.
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Glad to have you here.
 
I saw my rheumatologist today and the appointment, while lengthy, went really well. She discussed my late lab results and talked about the possibility of an autoimmune disorder. She said that since my ANA came back positive and I'm showing symptoms, she wants to start me off on medication used for autoimmune conditions. If I was positive without symptoms, she would keep an eye on me but not prescribe medications. So, I got a prescription for Plaquenil 200mg to be taken twice a day with meals. She said I need to get an eye exam as a baseline as very rarely some people get eye problems so I need to set that up very soon before my vision insurance cuts out. I'll see her again in another month to see where I am although she said the medication takes a while to work (up to 6 months, but usually you see improvements in 1-3 months). I'm very thankful to have her as my doctor - she was so nice when I explained I was laid off from my job and wanted to talk with me to make sure I was OK. All in all, it was a very productive appointment. :)
 
cmack said:
I hope things continue to be productive, it sounds like you are getting somewhere. Good luck. :)
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Yes, I am very happy with how it progressed. While I don't have an official diagnosis yet, she is treating me as if I have lupus (SLE) or another autoimmune disorder. I asked her if she thought that any of the medications could have caused drug-induced lupus, but she reviewed them and said it was highly unlikely since I'm not on any that are known to cause DIL. I'm hoping to find a job soon so that I can continue to keep my health insurance. :)
 
It can take a while to get an official diagnosis - there are a lot of autoimmune diseases with overlapping symptoms. SLE, Mixed Connective Tissue Disease, Sjogren's etc. It can take time to figure out exactly what you have.

Did she say anything about doing more blood work to look antibodies more specific to SLE?

My daughter took Plaquenil when she was first diagnosed. She was also on Sulfasalazine at the time. The only issue she had was nausea but I can't really say whether it was the Plaquenil or the SSZ. They didn't work for her, but she has an entirely different disease (AS). We moved on to biologics soon after.

However, lots of people with SLE do respond well to Plaquenil - it's usually the first and mildest drug for SLE. So hopefully it will work without causing issues.

Good luck!!
 
Maya142 said:
It can take a while to get an official diagnosis - there are a lot of autoimmune diseases with overlapping symptoms. SLE, Mixed Connective Tissue Disease, Sjogren's etc. It can take time to figure out exactly what you have.

Did she say anything about doing more blood work to look antibodies more specific to SLE?

My daughter took Plaquenil when she was first diagnosed. She was also on Sulfasalazine at the time. The only issue she had was nausea but I can't really say whether it was the Plaquenil or the SSZ. They didn't work for her, but she has an entirely different disease (AS). We moved on to biologics soon after.

However, lots of people with SLE do respond well to Plaquenil - it's usually the first and mildest drug for SLE. So hopefully it will work without causing issues.

Good luck!!
Click to expand...

Not at this time. I took the Plaquenil for the first time yesterday and did have some nausea but Zofran helped a lot. Apparently the generic, which is what I got, can cause some stomach irritation but the brand name does not. When I was reading the leaflet they gave me before I left, I thought it was a pretty mild drug, too, so I'm hoping my overly sensitive body will do well with it. I'm so used to having nausea so I'm not concerned. My rheumatologist did say to stop taking the Plaquenil if I develop a rash so that's something to watch out for. I'm thankful to be taking a step in the right direction. :)
 
Still experiencing dryness on and off through the day, and my throat seems to be objecting to it as well. I have to clear my throat constantly, especially after eating, and my voice is very strained to the point that I haven't really spoken at all today since I sound terribly raspy and hoarse and my throat feels tense and uncomfortable when I speak. Not sure if it's the dryness or something related to reflux or dysphagia but it sure is annoying.

Also, I've lost support from my family this week. It's been a process, really, with increased frustration, angry outbursts and mockery from family members as soon as I mention not being well. Even if they ask and I tell them the truth, I get comments and sarcastic remarks about how nothing is ever good with me and I'm "probably imagining" the issues because I've had surgery and should be all better. I've tried, but now as soon as I turn to them for support mostly what I get is taunts and anger. So I've basically decided to stop discussing my health with them. It's hurtful coming from the people who are meant to be closest to you in the world, but I just can't deal with fighting and feeling bullied on top of my actual illness.

MeggieLee - Welcome to the forums!
 
Izzie said:
Still experiencing dryness on and off through the day, and my throat seems to be objecting to it as well. I have to clear my throat constantly, especially after eating, and my voice is very strained to the point that I haven't really spoken at all today since I sound terribly raspy and hoarse and my throat feels tense and uncomfortable when I speak. Not sure if it's the dryness or something related to reflux or dysphagia but it sure is annoying.

Also, I've lost support from my family this week. It's been a process, really, with increased frustration, angry outbursts and mockery from family members as soon as I mention not being well. Even if they ask and I tell them the truth, I get comments and sarcastic remarks about how nothing is ever good with me and I'm "probably imagining" the issues because I've had surgery and should be all better. I've tried, but now as soon as I turn to them for support mostly what I get is taunts and anger. So I've basically decided to stop discussing my health with them. It's hurtful coming from the people who are meant to be closest to you in the world, but I just can't deal with fighting and feeling bullied on top of my actual illness.

MeggieLee - Welcome to the forums!
Click to expand...
I am sorry your family is responding this way
 
Izzie I’m so sorry you’re experiencing this dryness. Are your eyes dry as well still? It sounds like it’s a systemic drying since it hasn’t been isolated just to your throat. What kind of allergy testing have you had done? Would your doctors consider giving you the same support they would give a patient with sjogrens? I think it’s mostly supportive things that try to lessen the symptoms. Do steroids ever help you? Can they try you on a variety of medications (one at a time) that treat autoimmune disorders just to see if one helps? How is the burning feeling? Still just as bad?
 
Jabee said:
Izzie I’m so sorry you’re experiencing this dryness. Are your eyes dry as well still? It sounds like it’s a systemic drying since it hasn’t been isolated just to your throat. What kind of allergy testing have you had done? Would your doctors consider giving you the same support they would give a patient with sjogrens? I think it’s mostly supportive things that try to lessen the symptoms. Do steroids ever help you? Can they try you on a variety of medications (one at a time) that treat autoimmune disorders just to see if one helps? How is the burning feeling? Still just as bad?
Click to expand...

The thing that stopped the dryness last time was a one-time dose of cortisone as given to people with severe allergic reactions. The doctor would not give it to me this time around though since it's not a confirmed allergy and doesn't quite behave the way an allergy would. It's gotten a little better, it comes and goes a bit over the day, but it is still here. Throat, mouth, eyes. The GP said to give it two weeks and then we're testing for thyroid issues and Sjogrens if it hasn't gone away. Haven't had any allergy testing at all since it doesn't "sound like" an allergy to the doctors... They're very unwilling to do anything that might help until they have certain answers, and getting certain answers takes forever when you have to wait like 3 months between appointments, so I'm kind of frustrated...

Actually have not had the burning feeling once since I went off the meds. Might be a coincidence and it will be back tomorrow but for now I'm pretty pleased with the progress in that area. Throat irritation and dryness has been the flavor of the week :p

Hope you're doing well!
 
Anyone else here find that they can't eat fruit or berries? I don't know what it is but I just can't eat them. I get heartburn and my stomach gets all wonky. Doesn't matter if it's fresh fruit or canned or preserves or juice - I can't have any of it. I can eat one kind of apple, if I take the skin off. That's it.

Since surgery I can't even eat most vegetables because of the texture. My diet is very beige :p
 
cmack said:
My father has IBS and he gets really bad heartburn and reflux from most acidic fruit. I am okay that way so far. I hope things get figured out soon for you Izzie.
Click to expand...

It's moving forward. EGD is scheduled, referral to a GI is sent. Hopefully we will chip away at this mess one step at a time. Meanwhile I'm just trying to live some kind of life :biggrin:
 
I swear my dry mouth/dry eyes is the weirdest thing. If anyone has any ideas as to what the heck could be going on please do share your thoughts.

I've now gone off ALL my acid suppressants. No Zantac, no PPIs etc. I do have heartburn from doing this but am trying to stay off them for at least a week or so to see what happens.

However, my dry mouth and eyes come and go over the day VERY rapidly. One minute I can be fine and 30 minutes later I have absolutely NO saliva or tears. Then that might last 4-5 hours or more or less and then I feel pretty normal, maybe a little bit of dry mouth but nothing severe or debilitating. I can't imagine that this is typical of say Sjogrens or other "typical" causes of dry mouth and eyes? I'd imagine flares of autoimmune disease last longer than mere hours back and forth?

I've considered it might be an allergy but I have no idea to what as my habits and diet don't change that much from one day to the next. I've tried using a humidifier in my home with no result.

I've considered it may be a thyroid issue and will probably have bloodwork for that. But I just... am at a loss. I guess stress could be a thing becasue this does cause me stress but it seems so random and comes on so very fast that I can't really fully believe that theory either.

Could it be that I've come off the meds and have made a lot of changes to my medication over the past few weeks? Maybe my body is just confused and reacting strangely to the new circumstances?

I haven't the slightest clue and find the symptoms very bothersome and upsetting since I don't know what causes them.

Drinking water, taking eye drops, mouth rinses etc. do NOTHING for me, maybe only for very short moments if at all.
 
I hope your body is only adjusting, you could be right that it is reacting strangely to the new circumstances. I have had side effects from meds linger for over a week for sure, some only a couple days, others longer. You have my support Izzie.
 
Izzie, do the symptoms vary from room to room in your house? Could there be something to which you are allergic that exists in one spot but not another? I’m just grasping at straws here but I thought I’d at least ask. I understand they’ll be doing an upper endoscopy to try to figure out what’s going on? Have you had one in the past? I really hope the dryness is easily diagnosed and treated.
 
Jabee said:
Izzie, do the symptoms vary from room to room in your house? Could there be something to which you are allergic that exists in one spot but not another? I’m just grasping at straws here but I thought I’d at least ask. I understand they’ll be doing an upper endoscopy to try to figure out what’s going on? Have you had one in the past? I really hope the dryness is easily diagnosed and treated.
Click to expand...

I've had 5 scopes in the past 3 years so yeah... plenty of them. They have to put me under for them so it's a bit of an ordeal. I suppose it could be something at home I'm allergic to but I live in one big room and feel both good and bad when I'm home so I doubt it.

I doubt that dry eyes could have a cause that'll be discovered during an endoscopy. Seems like it's more systemic. It's bringing up all kinds of health anxiety I have about autoimmune disorders since I was evaluated briefly for systemic sclerosis during this whole mess. It was deemed quite unlikely and they dropped it, but I keep having weird issues. But that's mostly my brain in overdrive. I've fallen victim to Dr Google a little bit in the last few days, never a good idea :lol2:
 
It could be Sjogrens Syndrome which is an autoimmune disorder.....talk to your doctor who may refer you to an immunologist.
I have this syndrome and I was advised by the ophthalmologist to use an eye ointment called Muro which contains salt....works well for me
The dentist advised a special mouthwash called biotene designed for dry mouth.
The condition itself seems to happen where there is already disturbance of the immune system such as Crohns ,certain thyroid disorders etc.
I have all three......
Feel better soon
Trysha
 
Thanks Trysha, my GP wants to check me out for Sjogrens and will probably refer me somewhere for that. I also do have signs of thyroid issues so that will be checked as well. Sorry to hear you're dealing with so many health issues though, it's not easy is it? Hope you are well!
 
No Izzie.....it’s not easy but life goes on and we just have to accept each day as it comes.
Some have it a lot worse and I have good times to balance the not so good.
Looking forward to the snow stopping....we are getting quite a fall of it right now
So difficult to get around in this weather...
 
Hope you're okay as well, cmack!

I'm still dealing with the perpetual Sahara in my whole body. Turns out the dryness has given me a pretty nasty fungal infection, so I'm being treated for that. Surgeon suspects esophageal candidiasis as well... Have noticed that the dryness changes (for better or worse...) with medication changes so chances are it is related to the meds. Have been tested for thyroid issues, infection, and diabetes however. Will get results this week.

Am negative for Sjogrens antibodies but might proceed with a lip biopsy for more info.
 
Good morning all! Looks like I'm part of your club. Started having GI / iron deficiency issues back in 2014. Since then I've had three iron infusions, three upper and lower endoscopies, two capsule endoscopies (third one is scheduled very soon), and a double balloon enteroscopy.

First round found an AVM in my small bowel, which was treated through the balloon enteroscopy - after which the surgeon declared it "was a waste of his time". Nothing else has been found. I've had positive occult blood fecal tests multiple times which lead doctor to believe a GI bleed, but it can't be found. Due to having hemorrhoids, they believe they may be chasing a red herring. New doctor thinks my hematologist may need to do further testing.

My scopes look normal every time.

I have periods of severe stomach upset and intense stabbing pain. This typically lasts for a few weeks at a time, and the symptoms occur daily during that time.

Basically, they have no idea what's wrong with me, or what direction to look in!

So, I have a feeling I might be part of your club for a while! Can't wait to get to know you all!
 
Izzie that’s awful. Have you had your immune system tested? What are your IGA, IGG, and IGM levels? Could you have something like Common Variable Immune Deficiency? I’m just taking shots in the dark here. I’d like to get you seen by a diagnostic expert who can think creatively. I’m glad your surgeon is being helpful (at least it sounds like he is). Thinking of you.
 
Danibee said:
Good morning all! Looks like I'm part of your club. Started having GI / iron deficiency issues back in 2014. Since then I've had three iron infusions, three upper and lower endoscopies, two capsule endoscopies (third one is scheduled very soon), and a double balloon enteroscopy.

First round found an AVM in my small bowel, which was treated through the balloon enteroscopy - after which the surgeon declared it "was a waste of his time". Nothing else has been found. I've had positive occult blood fecal tests multiple times which lead doctor to believe a GI bleed, but it can't be found. Due to having hemorrhoids, they believe they may be chasing a red herring. New doctor thinks my hematologist may need to do further testing.

My scopes look normal every time.

I have periods of severe stomach upset and intense stabbing pain. This typically lasts for a few weeks at a time, and the symptoms occur daily during that time.

Basically, they have no idea what's wrong with me, or what direction to look in!

So, I have a feeling I might be part of your club for a while! Can't wait to get to know you all!
Click to expand...
Danibee, i hope you get answers soon.
 
Called my GI doc this afternoon to ask about scheduling my capsule endo. Have to wait 2-4 weeks! They took some biopsies during my upper and lower gi scopes last Friday and they said they have to wait to get results from pathology before they can do the capsule? :ybatty:
 
I wonder if they are trying to rule out scar tissue in the biopsies (or figure out how much). I know sometimes the pill cam isn't used if people have strictures caused by too much scar tissue. Maybe on the other hand, they think answers may lie in the biopsies, therefore making the capsule unnecessary. It does seem like an awful long time though.
 
That would make sense, if the endoscopies weren't "normal". the did find a nodule that they took a biopsy of, but they said it was small and very common to find. They did take biopsies of the duodenum even though the mucosa was normal. Doesn't make sense.

Just whining...:redface:
 
Jabee said:
Izzie that’s awful. Have you had your immune system tested? What are your IGA, IGG, and IGM levels? Could you have something like Common Variable Immune Deficiency? I’m just taking shots in the dark here. I’d like to get you seen by a diagnostic expert who can think creatively. I’m glad your surgeon is being helpful (at least it sounds like he is). Thinking of you.
Click to expand...

Not sure about those levels honestly. I have had the run of the mill bloodwork for Sjogrens/RA/Scleroderma and those came back "negative" whatever that means. EGD and GI specialist visit within a month now so hopefully that'll give some answers. The GI specialist scheduled a full hour with me so I'm hoping we'll make up a good plan for further testing and referrals. I personally do think I'm having weird immune responses to the meds, which I will discuss with my surgeon when he gets back (in about 2 weeks), so... Things are happening, just not fast enough for my taste :p

I switched from Zantac to 20 mg of generic Omeprazole and the next day I had normal-ish saliva flow again. For about 3 days, that is. Still not as severe on the Omeprazole as it was on the Zantac, which tells me that there's something going on with the meds...

Thanks! Hope you are doing well!
 
Exactly, cmack! It's calmed me down plenty to know that it's possible at all :) Still aggravated that I don't have a clear solution or cause yet, but I'm trying to be patient and zen about it :p Hope thing are good on your end?
 
A question for everyone: is seeing a specialist in internal medicine (with special focus on GI issues) a good idea when you're having sort of diffuse general problems that no one seems to be able to diagnose?

My issues as most of you know are reflux, recurring anemia, chronic constipation, strange "allergic" or immunological reactions to medications that come and go, mucus membrane dryness and at times blistering, as well as a constant stuffy nose. Other than that I also have other "symptoms" that don't really have a clear cause like dizziness, "pins and needles" in my hands and feet, losing lots of hair and also kind of growing hair in new strange places, unusually painful periods and recurring joint pain that I've had since childhood.

I ask because I've found an opportunity to make an appointment with such a specialist if I pay out of pocket, which I could do but only if I feel it's actually going to be worth the effort. State medical care here right now is a mess - the wait times are absurd, the specialists are too isolated from each other, and their administrative process is useless. As sick as I have been this year so far, I've seen a doctor ONCE, for 2 minutes. I just can't get to anyone to actually have a look at me or take the time to get the complete picture.

I'm young and feel like this is taking up too much of my time and energy, and wasting years of my life, so if I have to pay some money out of pocket to finally reach some answers, I think I'm willing to do that, I'm just not sure if internal medicine is the right tree to be barking up, so to speak...
 
Izzie said:
A question for everyone: is seeing a specialist in internal medicine (with special focus on GI issues) a good idea when you're having sort of diffuse general problems that no one seems to be able to diagnose?

My issues as most of you know are reflux, recurring anemia, chronic constipation, strange "allergic" or immunological reactions to medications that come and go, mucus membrane dryness and at times blistering, as well as a constant stuffy nose. Other than that I also have other "symptoms" that don't really have a clear cause like dizziness, "pins and needles" in my hands and feet, losing lots of hair and also kind of growing hair in new strange places, unusually painful periods and recurring joint pain that I've had since childhood.

I ask because I've found an opportunity to make an appointment with such a specialist if I pay out of pocket, which I could do but only if I feel it's actually going to be worth the effort. State medical care here right now is a mess - the wait times are absurd, the specialists are too isolated from each other, and their administrative process is useless. As sick as I have been this year so far, I've seen a doctor ONCE, for 2 minutes. I just can't get to anyone to actually have a look at me or take the time to get the complete picture.

I'm young and feel like this is taking up too much of my time and energy, and wasting years of my life, so if I have to pay some money out of pocket to finally reach some answers, I think I'm willing to do that, I'm just not sure if internal medicine is the right tree to be barking up, so to speak...
Click to expand...
I would say yes. Go see the gi specialist.
 
I agree with Ron, I think a specialist is your best bet. I know it seems like forever to see one, and you mentioned things in your state are messed up. I still think you should go to a specialist to try and get answers, be it an Endocrinologist, GI or IBD specialist. I'm thinking if it were me, that I would be leaning towards seeing an Endocrinologist if all else fails, even if you saw one in the past. Who knows what a fresh set of well trained eyes may see.
 
cmack said:
I agree with Ron, I think a specialist is your best bet. I know it seems like forever to see one, and you mentioned things in your state are messed up. I still think you should go to a specialist to try and get answers, be it an Endocrinologist, GI or IBD specialist. I'm thinking if it were me, that I would be leaning towards seeing an Endocrinologist if all else fails, even if you saw one in the past. Who knows what a fresh set of well trained eyes may see.
Click to expand...

That's sort of my line of thinking as well. Especially because this doctor is also a specialist in internal medicine and I think those doctors have a "wider" point of view. And as I would be paying out of pocket the wait would be shorter, and I believe he could refer me on to an endocrinologist or IBD specialist if need be. The state specialists in our universal healthcare system here all have absurdly long waits, and I'm on those lists, but my appointments keep getting pushed and I'm running out of patience... Thanks for the input!
 
Izzie said:
A question for everyone: is seeing a specialist in internal medicine (with special focus on GI issues) a good idea when you're having sort of diffuse general problems that no one seems to be able to diagnose?

My issues as most of you know are reflux, recurring anemia, chronic constipation, strange "allergic" or immunological reactions to medications that come and go, mucus membrane dryness and at times blistering, as well as a constant stuffy nose. Other than that I also have other "symptoms" that don't really have a clear cause like dizziness, "pins and needles" in my hands and feet, losing lots of hair and also kind of growing hair in new strange places, unusually painful periods and recurring joint pain that I've had since childhood.

I ask because I've found an opportunity to make an appointment with such a specialist if I pay out of pocket, which I could do but only if I feel it's actually going to be worth the effort. State medical care here right now is a mess - the wait times are absurd, the specialists are too isolated from each other, and their administrative process is useless. As sick as I have been this year so far, I've seen a doctor ONCE, for 2 minutes. I just can't get to anyone to actually have a look at me or take the time to get the complete picture.

I'm young and feel like this is taking up too much of my time and energy, and wasting years of my life, so if I have to pay some money out of pocket to finally reach some answers, I think I'm willing to do that, I'm just not sure if internal medicine is the right tree to be barking up, so to speak...
Click to expand...

Personally, I think internal medicine is a great specialty - very helpful for people with chronic illnesses. It was an internal medicine specialist who finally diagnosed my subclinical hypothyroidism when other doctors only believed test results (they never did the right tests). I currently see a family medicine specialist who manages chronic diseases and illnesses because I'm on an HMO so there are not a lot of doctors to choose from. I do recommend internal medicine.
 

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