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Undiagnosed Club Support Group

I agree, Izzie. I think seeing an internal medicine specialist is an excellent idea. I think you need fresh eyes on your issues. Let us know when the appointment is!
 
Morning all! I got to have a 64 oz barium milkshake for breakfast this morning! :drink: The PA said he didn't see any Crohn's or any other issues, but he of course wasn't a doctor. Still waiting on results from biopsies taken during scopes last week. Should have full results from small bowel series in a few days.

In other news, our hot water heater died last week, and our refrigerator died Friday night! WOOHOO! :runaway:

How is everyone's morning going?
 

cmack

Moderator
Staff member
Hi Danibee,

The morning here is going fine. -26.5c and sunny out. That sucks about the appliances, then you get the BIG GULP! I hope some good comes of all that milkshake, Good luck today.
 
Ronroush - I'm sorry. I know that has to make you very anxious. Hopefully the trip is for pleasure!

cmack - Holy cow that's cold! I grew up in Maine and it didn't get that cold, although that is quite a bit south! Hopefully your view makes it all worthwhile. I hear it's gorgeous out there. Hope you're somewhere warm!
 
Sorry about your father, ronroush! Hopefully your health issues won't distract too much from your time with him.

Danibee - YIKES, fridge AND heater. Lucky you....

Me, I'm dealing with an impacted wisdom tooth and no surgeon available to remove it so I'm spending my days at the dentist's office trying to get it "cleaned out" so the infection won't take over my entire face by the time the surgeon has an available appointment. Oh fun.

Bright side though; I'm unmedicated and my reflux seems to be... gone? Or at least radically improved. I haven't so much as needed Tums for the past 3 days. Dryness is better as well off the medication, though my eyes haven't really improved yet. Moving in the right direction though!
 

cmack

Moderator
Staff member
Hi Izzie,

I strongly dislike the dentists office, never a good time to be had there. Darn it! A wisdom tooth too hey? The bright side is good though, 3 days without reflux must feel great. I wish you many more days of that. I'm thinking of you, hopefully after the tooth is fixed that's all for a while. My goodness!


Take care,

Chris
 
I haven’t posted in a while, but I have been reading everyone’s posts. I have nothing new to report, but I need to complain really fast, and you guys are my favorite people to complain to. :)

I feel like I’m never going to get better. Like I’m 99.9% sure I’m going to be sick forever, and I’m never going to be able to live the life I want. My digestive issues are still my number one complaint. But my second most troubling problem is this dang anxiety!! I never had anxiety like this until about a year ago. Doctors love when I tell them I have anxiety, because then they can just blame all my problems on it. But I don’t care what anyone says; I know my anxiety is related to whatever is wrong with me. And not even just related.....whatever is going on with me is causing my anxiety. I can’t drive more than a few blocks. The other day I drove a few blocks away and had to go to this scary stop light (who even knew stop lights could be scary?!), and when I told my husband and my dad, they both told me they were really proud of me. I never thought I’d see the day when driving a few blocks would make people proud of me. And for the record, before all this, I used to think driving was relaxing!!! And don’t even get me started on me trying to go to the store. I just went to the store with my dad. I was there for about two minutes before I started freaking out. I got dizzy and it felt hard to breathe, and I started panicking. I wasn’t sure if I was going to make it out of there! I did though, and now I’m sitting in the car, typing this, feeling sorry for myself.

Anyway, thanks for letting me vent. I hope you guys are having a better day than I am!
 

cmack

Moderator
Staff member
Hi akgirl,

I know it doesn't seem like much to go out to a store or go driving, but I'm proud of you too. My anxiety became elevated due to my health issues in the past as well. I really avoided public situations, due to not wanting to explain my situation out in front of people in the grocery store or wherever, having an accident etc. I went from very social to more reserved. It is something that is different for everyone, yet I think at times that we all suffer it to some degree. It's good to hear from you, you may want to try driving again sometime and see if you are more calm. I know for me, the more I got out, the more it slowly made me more comfortable dealing with people and regular circumstances again. I hope the same is true for you.
 
Thanks, cmack! I’m glad to know that you understand. It’s such a scary feeling! It’s hard because leaving my house can be terrifying, but staying in my house all day makes me feel like I’m going to go crazy sometimes. There’s just no winning, apparently!
 
akgirl, I know my illness causes me LOTS of anxiety. Especially anxiety about the illness - what it is, if it's going to get worse, if symptoms are going to be permanent etc. Illness (and anxiety/depression for that matter) is also pretty isolating I've found. And the more time I spend with myself in my own head - the worse everything gets :p

I'm still constantly nervous that my dryness which comes and goes in terms of severity but doesn't seem to go away - is going to be Sjogrens or something similar and will only get worse. Since I find those symptoms so unbearable and debilitating, that's been causing me TONS of anxiety and stress. I try not to go there but when you spend a lot of time by yourself without anything else to focus on; it's hard.

I'm preparing for a move right now, which is nice. My current apartment has just lost its shine, for me. I've been so sick in this apartment, so miserable. I was nearly suicidal for the first and so far only time in this apartment. It's like it's in the walls, now. Definitely want and need a change and am excited for a fresh start in a new home :)
 

cmack

Moderator
Staff member
You have my support Izzie. I know it's hard, I hope you are able to move beyond those apartment walls and find somewhere to start fresh. If you ever feel bad you can pm me.
 
Izzie, I’m glad you’re moving! A bit of a fresh start may be just what you need. I also want to move....I don’t care if it’s to a new state, a new city, or just to a new house 10 minutes away. I feel like I’m in need of a change too. This house has seen way too much bad! Let us know how your move goes! I also completely agree that illness is very isolating. I feel like everyone who has a chronic illness has experienced anxiety and depression because of it. I feel like it’s impossible not to!
 
Concerning moving, i just came back from an emergency trip to Florida. If it weren't for my son living up here, I wouldn't mind moving there.
 
Ronroush - I'm so sorry to hear about your father. We're all getting to that age now where we have to start worrying about them. :-( We were hot here in Orlando area over the weekend - 89º! No way - bring me my winter!

Izzy - Wisdom tooth! Yikes! Hope the infection clears up quickly! Funny story, when my daughter was about 6 months old I had to have a root canal. She wasn't the easiest baby (to put it mildly). The dentist apologized at one point for the root canal to be taking so long and I told her to take her time! I was sitting in a reclining chair watching TV and no screaming in the background!!! If you ever need to talk about depression, etc, please pm me. We have a lot in common with our depression.

Akgirl - I've been an expert in anxiety and depression for the past 8 years (PTSD)! It's no fun, I know how paralyzing it can be. Congrats on being able to overcome it a bit to get some of your freedom back! That's a huge step! Just remember to breathe!!
 
Ronroush - I'm so sorry to hear about your father. We're all getting to that age now where we have to start worrying about them. :-( We were hot here in Orlando area over the weekend - 89º! No way - bring me my winter!

Izzy - Wisdom tooth! Yikes! Hope the infection clears up quickly! Funny story, when my daughter was about 6 months old I had to have a root canal. She wasn't the easiest baby (to put it mildly). The dentist apologized at one point for the root canal to be taking so long and I told her to take her time! I was sitting in a reclining chair watching TV and no screaming in the background!!! If you ever need to talk about depression, etc, please pm me. We have a lot in common with our depression.

Akgirl - I've been an expert in anxiety and depression for the past 8 years (PTSD)! It's no fun, I know how paralyzing it can be. Congrats on being able to overcome it a bit to get some of your freedom back! That's a huge step! Just remember to breathe!!
Thanks, Danibee. I was in Orlando international Airport last week.
 
Doctor appointment yesterday. Biopsy results from endo and colonscopy, and the small bowel series all were fine. Next up is the pill cam, which will basically be checking off a box. I don't expect to find anything. Once the pill cam comes back clean, then the GI doc will refer me back to the hematologist to look at hematological reasons behind my anemia.


Still leaves issue of stomach pains and nausea. Doc has ordered a HIDA scan in the meantime. He also gave me a supplement called FDgard to see if that helps the pain and nausea.

So, yea. That's where I'm at. Definitely not Crohns or celiac.
 
Doctor appointment yesterday. Biopsy results from endo and colonscopy, and the small bowel series all were fine. Next up is the pill cam, which will basically be checking off a box. I don't expect to find anything. Once the pill cam comes back clean, then the GI doc will refer me back to the hematologist to look at hematological reasons behind my anemia.


Still leaves issue of stomach pains and nausea. Doc has ordered a HIDA scan in the meantime. He also gave me a supplement called FDgard to see if that helps the pain and nausea.

So, yea. That's where I'm at. Definitely not Crohns or celiac.
Hope you have a diagnosis soon.
 

cmack

Moderator
Staff member
All good news, except no solid answers. You have my support, it's so frustrating. Hang in there Danibee, I hope they find the cause of your problems very soon.
 
I'm starting to think the universe has it out for me. Kicked the wisdoom tooth infection, but today: flu! xD

Woke up with body aches like crazy. There's a snow storm outside, so I'm not missing much. Going to stay bundled up on this couch for the foreseeable future.
 
I'm starting to think the universe has it out for me. Kicked the wisdoom tooth infection, but today: flu! xD

Woke up with body aches like crazy. There's a snow storm outside, so I'm not missing much. Going to stay bundled up on this couch for the foreseeable future.
Sending you support.
 
I hope everyone is doing well. I'm kind of laying low, so to speak, due to the ongoing job search and taking care of my health. I met with my rheumatologist yesterday and, quite frankly, I'm annoyed with her. My mom came with me to the appointment because I dropped her off to get her car fixed and she rode to my appointment. She thinks my doctor is a broken record because she wouldn't stop talking about the same subject. I'm not sure what to do at this point because I just started on Plaquenil last month and need a doctor's supervision while on the medication in case it causes problems. I started my COBRA coverage so I continue to have health insurance so it's a possibility that I could see someone else but there are very few covered rheumatologists on my HMO. I thought about seeing her associate but I don't want to be flagged as "doctor shopping" or "drug seeking."

I fear taking too much Advil since it causes GI issues for me and Tylenol doesn't really do much. She keeps giving me muscle relaxers which are not good for long-term use - they are mainly supposed to be used for acute injuries. I don't know what to do except seek out a 2nd opinion. :(
 

Maya142

Moderator
Staff member
Is there a specific issue you wanted addressed that she didn't address? Do you have a diagnosis yet? Is she thinking inflammatory arthritis or a connective tissue disease or lupus?

Plaquenil does take 6 weeks to work. How long have you been on it? If it hasn't been long,I wouldn't expect a decrease in pain just yet.

Also, has she suggested a different NSAID for you? My daughter tried MANY NSAIDs. She was on Naproxen for a while and it caused such bad gastritis that she ended up losing 15 lbs because she would not eat (and this was a thin kid to begin with). It took a lot of trial and error but we found an NSAID that would work for her and didn't cause GI problems.

Celebrex is the one that is the easiest on the gut. I have one daughter on it. Both girls are on NSAIDs with PPIs to protect their stomach. Have been on them for years, including the daughter with IBD. Her rheumatologist and GI decided it was ok since her joints are so much worse than her gut.

An NSAID should be helpful for the joint pain and inflammation and stiffness (if you have any).

You could also try something like Neurontin (Gabapentin), Lyrica or Elavil. Antidepressants and anticonvulsants are used for pain in low doses.
 
Is there a specific issue you wanted addressed that she didn't address? Do you have a diagnosis yet? Is she thinking inflammatory arthritis or a connective tissue disease or lupus?

Plaquenil does take 6 weeks to work. How long have you been on it? If it hasn't been long,I wouldn't expect a decrease in pain just yet.

Also, has she suggested a different NSAID for you? My daughter tried MANY NSAIDs. She was on Naproxen for a while and it caused such bad gastritis that she ended up losing 15 lbs because she would not eat (and this was a thin kid to begin with). It took a lot of trial and error but we found an NSAID that would work for her and didn't cause GI problems.

Celebrex is the one that is the easiest on the gut. I have one daughter on it. Both girls are on NSAIDs with PPIs to protect their stomach. Have been on them for years, including the daughter with IBD. Her rheumatologist and GI decided it was ok since her joints are so much worse than her gut.

An NSAID should be helpful for the joint pain and inflammation and stiffness (if you have any).

You could also try something like Neurontin (Gabapentin), Lyrica or Elavil. Antidepressants and anticonvulsants are used for pain in low doses.
I tried to address my chronic pain with her from both my fibromyalgia and osteoarthritis issues. She only said that she could prescribe a different muscle relaxer with no talk about another NSAID or something else. She has originally said in our first meeting that I could take 800mg of Advil for pain but I do not want to use such a high dose. I had read in different reliable resources like WebMD and drugs.com that Tramadol is very effective in treating fibromyalgia pain and doesn't cause as many GI issues. I know it's now a controlled substance, but some of my family members have been on it and it appears to be one of the milder painkillers. When I brought it up, she instantly shut the idea down and acted like I was drug-seeking. I didn't even have the opportunity to explain that I don't need it everyday so I would only take it "as needed." I would have liked the opportunity to explain that I am very cautious about using painkillers and didn't even use all of the ones for my surgery because I didn't want to become addicted (I had 15 Vicodin left).
I wouldn't have even minded the lowest dose. If she didn't want to do it, I understand but at least provide another alternative! She didn't even go that far and that's what frustrates me.

As far as antidepressants go, that unfortunately isn't an option since I'm on 2 already for my psychiatric issues so there is already risk of serotonin syndrome or other problems. I just feel like she's not really wanting to treat my symptoms quickly.

The positive side is that the Plaquenil is already helping me. I'm not nearly as fatigued or hurting as much as I was. I think the pain has been reduced by 1/3 of what it was before the medication. It will be a while before I see the full effect, but at least I know it's helping. :)
 

my little penguin

Moderator
Staff member
I would definitely ask if there are different nsaid options
Ds tried multiple NSAIDs as well
Ended up tolerating Celebrex very well
Even had a good scope on it
No issues
 

cmack

Moderator
Staff member
Hi MissLeopard,

First off, I'm glad the plaquenil is already helping. That is great to hear. :)

Regarding the discussion you had involving opiates. I had a talk with my GP on day one, I told him that I likely needed certain, (possible substances of abuse) to treat my pain. I gave him my word that I would prove it to him, over time, that I was being responsible. Things worked out well. First you have to get the chance to prove yourself, there is the tough part. I thought I would tell you how I approached it.


Regards,

Chris
 
I would definitely ask if there are different nsaid options
Ds tried multiple NSAIDs as well
Ended up tolerating Celebrex very well
Even had a good scope on it
No issues
I thought about asking about Celebrex but when I researched it online, it said that it was contraindicated in people with allergies to sulfa drugs which, unfortunately, I have. I cannot use Bactrim or other sulfa drugs because my asthma gets really bad and I get a rash. I know there are others out there but she didn't bring them up.

I'm seriously looking at getting a second opinion because I don't see her again for another 2 months (at her request). I have found a new rheumatologist about 5 minutes away from my house which is MUCH better since it takes about 40-45 minutes to get to the one I've been seeing. I'm going to call tomorrow and see if I can get in to see her. Hopefully, she can provide more insight into pain control, even if it is OTC medications, so I can have more direction.
 
Hi MissLeopard,

First off, I'm glad the plaquenil is already helping. That is great to hear. :)

Regarding the discussion you had involving opiates. I had a talk with my GP on day one, I told him that I likely needed certain, (possible substances of abuse) to treat my pain. I gave him my word that I would prove it to him, over time, that I was being responsible. Things worked out well. First you have to get the chance to prove yourself, there is the tough part. I thought I would tell you how I approached it.


Regards,

Chris
I'm glad that your doctor was not as quick to shut you down. I don't like the idea of using narcotics/opiates but I also don't like feeling so bad that I struggle to do daily activities. Fibromyalgia really sucks because it's always a toss-up as to how you are going to feel when you wake up in the morning. Hopefully, I can get in to see someone for a second opinion soon and find more options, whether or not it includes painkillers.
 

cmack

Moderator
Staff member
Good luck, I know how hard it can be to find pain relief. I think there will be something that is appropriate for you. Take it easy.
 
Just to give you guys an idea of what I looked at before discussing Tramadol with my doctor, these are articles that I read that gave me insight as to how it could help with fibromyalgia pain:

https://fibromyalgianewstoday.com/2015/07/31/tramadolacetaminophen-improves-quality-life-chronic-pain-patients/

https://www.verywell.com/ultram-for-fibromyalgia-716075

http://www.fibromyalgiatreating.com/pain-medication/

http://www.amjmed.com/article/S0002-9343(03)00116-5/abstract

These are only a few of the articles I looked at but they all say the same thing - Tramadol has been proven effective for treating moderate-to-severe fibromyalgia pain (better than any other painkiller).
 

Maya142

Moderator
Staff member
You need to look for studies on PubMed.

But a few caveats about Tramadol -
Has the same risk of serotonin syndrome - so it would not be prescribed if you are on two anti-depressants. My daughter was only on one anti-depressant and her pain management doctor and rheumatologist were hesitant to put her on Tramadol. They did, and she was fine, but the two anti-depressants might be why your doc hasn't mentioned it.

It has side effects - if Flexeril caused side effects at 2.5 mg (which is a BABY dose), so will Tramadol, I would guess. Expect nausea, sleepiness, feeling "fuzzy." I remember you having slow gastric emptying - Tramadol can worsen that.

The good news is over time you get used to them but the bad news is over time you get tolerant to opioids and need higher and higher doses. That is why doctors are now not using them for chronic conditions as much as possible.

I think another reason might be the opioid epidemic - doctors are now VERY hesitant to prescribe opioids, even mild ones like Tramadol. They want you to try everything else first.

Things you could try:
Switching anti-depressants - some anti-depressants work well for pain, including Fibromyalgia pain. Cymbalta is one.

Trying an anti-convulsant (might be allowed even with antidepressants - my daughter takes Gabapentin with an anti-depressant).

Trying injections into the joints that hurt - steroid injections. So for example, if you are having lower back pain, they may do facet joint or SI joint injections.

Trying another NSAID - I would also about the more gut friendly NSAIDs. Advil is NOT one of them. My daughter (who has a very sensitive stomach!) can tolerate 3 - Mobic, Celebrex and Relafen. She does need a PPI with them, but they work very well for rheumatic conditions.

I'm not anti-Tramadol at all, in fact I am pro-Tramadol for occasional use! I think it works well and for MOST it has few side effects. My older daughter takes it occasionally. I just think, unfortunately, with the opioid epidemic, you may have a hard time getting someone to prescribe it :(.

It is very frustrating to us too that patients who are responsible and really need pain relief are now suffering because it is getting harder and harder to get opioids. I have a daughter with very severe AS and significant joint damage and her quality of life would be a lot worse without them.

My younger daughter's rheumatologist told us at the first appt. that she NEVER prescribes opioids and you have to go to pain management for that. Often rheumatologists only take care of the disease - and they consider the pain that comes with it a pain management doctor's problem if it is not controlled by NSAIDs, DMARDs and biologics.

Another reason might be that you do not have a proper diagnosis yet, right? Currently they are just calling it a connective tissue disease which is vague. Your rheumatologist doesn't know what you have and until she does, she may be more hesitant to prescribe certain drugs. That is probably why she put you on Plaquenil - it works for some patients but it's a pretty mild drug. Probably the mildest DMARD she could have put you on.

The best treatment for fibromyalgia is actually exercise. There are plenty of studies that support that. I would try to get 30 minutes of aerobic exercise a day - it can make a huge difference. It doesn't have to be intense exercise - even walking counts.

Good luck!!
 

Maya142

Moderator
Staff member
Medications: The U.S. Food and Drug Administration has approved three drugs for the treatment of fibromyalgia. They include two drugs that change some of the brain chemicals (serotonin and norepinephrine) that help control pain levels: duloxetine (Cymbalta) and milnacipran (Savella). Older drugs that affect these same brain chemicals also may be used to treat fibromyalgia. These include amitriptyline (Elavil) and cyclobenzaprine (Flexeril). Other antidepressant drugs can be helpful in some patients. Side effects vary by the drug. Ask your doctor about the risks and benefits of your medicine.

The other drug approved for fibromyalgia is pregabalin (Lyrica). Pregabalin and another drug, gabapentin (Neurontin), work by blocking the over activity of nerve cells involved in pain transmission. These medicines may cause dizziness, sleepiness, swelling and weight gain.

It is strongly recommended to avoid opioid narcotic medications for treating fibromyalgia. The reason for this is that research evidence shows these drugs are not of helpful to most people with fibromyalgia, and will cause greater pain sensitivity or make pain persist. Tramadol (Ultram) may be used to treat fibromyalgia pain if short-term use of an opioid narcotic is needed. Over-the-counter medicines such as acetaminophen (Tylenol) or nonsteroidal anti-inflammatory drugs (commonly called NSAIDs) like ibuprofen (Advil, Motrin) or naproxen (Aleve, Anaprox) are not effective for fibromyalgia pain. Yet, these drugs may be useful to treat the pain triggers of fibromyalgia. Thus, they are most useful in people who have other causes for pain such as arthritis in addition to fibromyalgia.

For sleep problems, some of the medicines that treat pain also improve sleep. These include cyclobenzaprine (Flexeril), amitriptyline (Elavil), gabapentin (Neurontin) or pregabalin (Lyrica). It is not recommended that patients with fibromyalgia take sleeping medicines like zolpidem (Ambien) or benzodiazepine medications.
These are the new EULAR guidelines:
http://ard.bmj.com/content/76/2/318

Another article: http://www.mdpi.com/2227-9059/5/2/22/htm
 
You need to look for studies on PubMed.

But a few caveats about Tramadol -
Has the same risk of serotonin syndrome - so it would not be prescribed if you are on two anti-depressants. My daughter was only on one anti-depressant and her pain management doctor and rheumatologist were hesitant to put her on Tramadol. They did, and she was fine, but the two anti-depressants might be why your doc hasn't mentioned it.

It has side effects - if Flexeril caused side effects at 2.5 mg (which is a BABY dose), so will Tramadol, I would guess. Expect nausea, sleepiness, feeling "fuzzy." I remember you having slow gastric emptying - Tramadol can worsen that.

The good news is over time you get used to them but the bad news is over time you get tolerant to opioids and need higher and higher doses. That is why doctors are now not using them for chronic conditions as much as possible.

I think another reason might be the opioid epidemic - doctors are now VERY hesitant to prescribe opioids, even mild ones like Tramadol. They want you to try everything else first.

Things you could try:
Switching anti-depressants - some anti-depressants work well for pain, including Fibromyalgia pain. Cymbalta is one.

Trying an anti-convulsant (might be allowed even with antidepressants - my daughter takes Gabapentin with an anti-depressant).

Trying injections into the joints that hurt - steroid injections. So for example, if you are having lower back pain, they may do facet joint or SI joint injections.

Trying another NSAID - I would also about the more gut friendly NSAIDs. Advil is NOT one of them. My daughter (who has a very sensitive stomach!) can tolerate 3 - Mobic, Celebrex and Relafen. She does need a PPI with them, but they work very well for rheumatic conditions.

I'm not anti-Tramadol at all, in fact I am pro-Tramadol for occasional use! I think it works well and for MOST it has few side effects. My older daughter takes it occasionally. I just think, unfortunately, with the opioid epidemic, you may have a hard time getting someone to prescribe it :(.

It is very frustrating to us too that patients who are responsible and really need pain relief are now suffering because it is getting harder and harder to get opioids. I have a daughter with very severe AS and significant joint damage and her quality of life would be a lot worse without them.

My younger daughter's rheumatologist told us at the first appt. that she NEVER prescribes opioids and you have to go to pain management for that. Often rheumatologists only take care of the disease - and they consider the pain that comes with it a pain management doctor's problem if it is not controlled by NSAIDs, DMARDs and biologics.

Another reason might be that you do not have a proper diagnosis yet, right? Currently they are just calling it a connective tissue disease which is vague. Your rheumatologist doesn't know what you have and until she does, she may be more hesitant to prescribe certain drugs. That is probably why she put you on Plaquenil - it works for some patients but it's a pretty mild drug. Probably the mildest DMARD she could have put you on.

The best treatment for fibromyalgia is actually exercise. There are plenty of studies that support that. I would try to get 30 minutes of aerobic exercise a day - it can make a huge difference. It doesn't have to be intense exercise - even walking counts.

Good luck!!
I actually don't have gastroparesis - it was one of the things I was tested for but it came back normal. I have tried Cymbalta before a LONG time ago when it first came out for depression and I can't take it due to it causing extreme mood swings. I would lash out for no reason at all. I don't know about other antidepressants for pain control.

If there are other options that are milder than Tramadol, I'm all for giving them a try first, but I don't understand why my rheumatologist wants to keep me on the muscle relaxer when it is not for long-term use. I'm taking Norflex 100mg twice a day (I usually take it with the Plaquenil). It does work better for me than Flexeril without the extra tiredness. I will be calling the other rheumatologist I found tomorrow and see if I can get into see her. I would prefer someone closer anyway, so I hope she's good.

Yes, you are correct that I don't have a diagnosis of lupus yet. All my chart says is "autoimmune connective tissue disease" and that's what the Plaquenil is supposed to help.
 

Maya142

Moderator
Staff member
There are others too - Effexor is one. Fetzima is similar to Savella which is actually approved for Fibromyalgia. Fetzima is an antidepressant.

Savella isn't an anti-depressant so it might be one to try. I don't know if it interacts with your other meds though.

Generally, the SNRIs are used for pain as well as depression. SSRIs did not do as well in trials for chronic pain.

I don't necessarily think other options are "milder" just that in this current climate, getting even Tramadol might be difficult. It is a mild opioid - it's given to kids with arthritis.

All muscle relaxants are meant to be used for a short time. However, my girls have been on Flexeril for years and it still works for them. One is on 5 mg and the other on 10 mg. They haven't had any issues stopping it - no withdrawal symptoms that you would get with opioids. They just stop.

The other issue with opioids is that they can actually cause more pain if used for a long time. This is called opioid induced hyperalgesia. They actually change your brain and nervous system and make you more sensitive to pain. They are not recommended for people with fibromyalgia for that reason - people with fibromyalagia have nerves that are more sensitive to pain anyway.

But if you use them only occasionally, then that should not be an issue. It's really long-term use that is the big problem.

The other things that could help - Voltaren gel, Lidocaine patches, a TENS unit, acupuncture and massage. My daughter has tried all of the above. Acupuncture did not help her, but everything else did, especially massage.

A second opinion is a good idea. You also could consider seeing a pain management doctor. Both my girls see one. If you do see one, remember to ask about serotonin syndrome because of your antidepressants. It can be very serious and is often forgotten by doctors.
 
There are others too - Effexor is one. Fetzima is similar to Savella which is actually approved for Fibromyalgia. Fetzima is an antidepressant.

Savella isn't an anti-depressant so it might be one to try. I don't know if it interacts with your other meds though.

Generally, the SNRIs are used for pain as well as depression. SSRIs did not do as well in trials for chronic pain.

I don't necessarily think other options are "milder" just that in this current climate, getting even Tramadol might be difficult. It is a mild opioid - it's given to kids with arthritis.

All muscle relaxants are meant to be used for a short time. However, my girls have been on Flexeril for years and it still works for them. One is on 5 mg and the other on 10 mg. They haven't had any issues stopping it - no withdrawal symptoms that you would get with opioids. They just stop.

The other issue with opioids is that they can actually cause more pain if used for a long time. This is called opioid induced hyperalgesia. They actually change your brain and nervous system and make you more sensitive to pain. They are not recommended for people with fibromyalgia for that reason - people with fibromyalagia have nerves that are more sensitive to pain anyway.

But if you use them only occasionally, then that should not be an issue. It's really long-term use that is the big problem.

The other things that could help - Voltaren gel, Lidocaine patches, a TENS unit, acupuncture and massage. My daughter has tried all of the above. Acupuncture did not help her, but everything else did, especially massage.

A second opinion is a good idea. You also could consider seeing a pain management doctor. Both my girls see one. If you do see one, remember to ask about serotonin syndrome because of your antidepressants. It can be very serious and is often forgotten by doctors.
I have tried so many antidepressants, including Effexor, for my psychiatric issues and Effexor was one of the worst. I had weird vision changes and mood swings. I have not tried Savella, though, or Neurontin. My mom uses Neurontin for her neuropathy and it makes her very tired but doesn't really help with pain.

I'm actually hoping to get off one of my antidepressants because I don't think it's working. I've only been on it for a few months and my doctor has upped the dose to the maximum and I'm still having symptoms. I think I would rather try a mood stabilizer like Lamictal, which we have discussed, so hopefully, that will open up more options for pain control. Lamictal is sometimes used for pain control, so that might be a good add-on therapy. So many user reviews have said it has helped them with mood swings, so I hope I can receive benefit from it. I have to wait until my psychiatrist returns, though, from a family emergency. I was supposed to see her yesterday but the appointment was cancelled.

As for the other things you have mentioned, I have tried Biofreeze and Aspercreme with little to no results. The one thing that did help was Aspercreme Lidocaine Cream. The first time I used it was on a nasty hematoma I had from my first abdominal surgery. It decreased the pain significantly, so that was wonderful. I've used a TENS unit at the chiropractor I saw for a while and it didn't really help either. I have not tried acupuncture or massage, though.

I just tried to call the rheumatology office to get an appointment set up for a second opinion but no one is answering the phone so I left a message.
 
Lamoctil is not without its issues and many side-effects,
Some are serious
My daughter takes lamoctil for epilepsy, side effects being abdominal pain (some has been severe) back pain, insomnia, tremor, changes in appetite (hungry all the time). Mood swings (amuses me as it’s used for mood disorder)
Acne, rashes (some can be life threatening) these are the effects she has had.

Here is Cochrane review for lamoctil in pain management

http://www.cochrane.org/CD006044/SYMPT_lamotrigine-antiepileptic-drug-chronic-neuropathic-pain-or-fibromyalgia

As for tramadol... it’s very addictive. The more you use, the less effective it becomes

I’ve lived with chronic pain (arthritis) for 24 years, and you do learn to live with it, I’ve never used any hardcore pain relief because I don’t like the side effects and I’ve always been aware of the issue with drug tolerance developing so it becomes useless

I do think pain management courses and clinic would be really helpful

I hope you find some relief soon
 

Maya142

Moderator
Staff member
Lidocaine patches might help you them. A physician has to prescribe them (even your PCP could - it doesn't have to be your rheumatologist). My girls use them on joints that hurt. Voltaren gel is another option - it's an NSAID but since it's topical, it won't upset your gut.

I have heard Lamictal being used for pain, but anti-convulsants do tend to come with a lot of side effects. My daughter tried Trileptal, which is similar.

My kiddo uses Gabapentin for both sleep and pain. It definitely helps her sleep. Not sure on the pain part though. She takes it at night so it actually helps that it makes her sleepy.

It may be worth trying physical therapy since exercise is the number 1 recommendation for fibromyalgia and according to studies, works better than any medication. A physical therapist can recommend a TENS unit and get you a good one. He or she can also work on massage.

Often with chronic illnesses, we tend to do less when we're in pain. Then you get deconditioned, which causes more pain. That is why regular exercise is crucial as well as staying active as possible. A PT can help with that - help get you started.

My daughter even did an intensive pain rehab program which had 4-5 hours of PT/exercise a day! It REALLY helped her - more than any of the pain meds have. And she has tried a LOT of them.
 
Lidocaine patches might help you them. A physician has to prescribe them (even your PCP could - it doesn't have to be your rheumatologist). My girls use them on joints that hurt. Voltaren gel is another option - it's an NSAID but since it's topical, it won't upset your gut.

I have heard Lamictal being used for pain, but anti-convulsants do tend to come with a lot of side effects. My daughter tried Trileptal, which is similar.

My kiddo uses Gabapentin for both sleep and pain. It definitely helps her sleep. Not sure on the pain part though. She takes it at night so it actually helps that it makes her sleepy.

It may be worth trying physical therapy since exercise is the number 1 recommendation for fibromyalgia and according to studies, works better than any medication. A physical therapist can recommend a TENS unit and get you a good one. He or she can also work on massage.

Often with chronic illnesses, we tend to do less when we're in pain. Then you get deconditioned, which causes more pain. That is why regular exercise is crucial as well as staying active as possible. A PT can help with that - help get you started.

My daughter even did an intensive pain rehab program which had 4-5 hours of PT/exercise a day! It REALLY helped her - more than any of the pain meds have. And she has tried a LOT of them.
Lidocaine patches are actually available OTC in the USA now. Aspercreme and Icy Hot both have them and I think Salonpas even makes a version now. :)

I did not hear back from the 2nd rheumatology office today so I'll try again tomorrow. I may look into pain management and/or physical therapy. I think I have to get a referral for PT, though, for my insurance. I had it once before for balance retraining therapy. I might also look into going back to the chiropractor again. I'm just kind of iffy about the chiropractor because it hurt for several days afterward. He has a massage therapist in his office, so I could ask about that, too. I know there are acupuncturists around here, too. A lot to think about. :)
 
Lamoctil is not without its issues and many side-effects,
Some are serious
My daughter takes lamoctil for epilepsy, side effects being abdominal pain (some has been severe) back pain, insomnia, tremor, changes in appetite (hungry all the time). Mood swings (amuses me as it’s used for mood disorder)
Acne, rashes (some can be life threatening) these are the effects she has had.

Here is Cochrane review for lamoctil in pain management

http://www.cochrane.org/CD006044/SYMPT_lamotrigine-antiepileptic-drug-chronic-neuropathic-pain-or-fibromyalgia

As for tramadol... it’s very addictive. The more you use, the less effective it becomes

I’ve lived with chronic pain (arthritis) for 24 years, and you do learn to live with it, I’ve never used any hardcore pain relief because I don’t like the side effects and I’ve always been aware of the issue with drug tolerance developing so it becomes useless

I do think pain management courses and clinic would be really helpful

I hope you find some relief soon
My intention was not to use Lamictal for pain control - I have a mental health condition and my psychiatrist and I have discussed the usage of mood stabilizers if my current treatment is not working. Unfortunately, I think it might be necessary because I'm still showing symptoms. I do not wish to discuss what I have, but I know Lamictal is often used for treating it as are other mood stabilizers. The condition is pretty difficult to treat, though, so mood stabilizers may not work or have limited results. Lamictal can help with pain control, but it's not often prescribed for that usage. Gabapentin is much more common, from what I've heard.

I've never been to a pain management specialist so I don't know if I need a referral for my insurance to approve it. I'll have to check my benefits book.
 
My intention was not to use Lamictal for pain control - I have a mental health condition and my psychiatrist and I have discussed the usage of mood stabilizers if my current treatment is not working. Unfortunately, I think it might be necessary because I'm still showing symptoms. I do not wish to discuss what I have, but I know Lamictal is often used for treating it as are other mood stabilizers. The condition is pretty difficult to treat, though, so mood stabilizers may not work or have limited results. Lamictal can help with pain control, but it's not often prescribed for that usage. Gabapentin is much more common, from what I've heard.

I've never been to a pain management specialist so I don't know if I need a referral for my insurance to approve it. I'll have to check my benefits book.
I forgot about your insurance with your job.
I understand you don’t want to discuss your condition, but I think I’ve got a pretty good idea.
I don’t know the success of lamoctil for the other conditions it treats other than epilepsy, but I do hope you find a medication that helps. Also when you’re in a job you really like and feel valued that may also make a world of difference for you.

Yeah gabapentin is often used here for pain.
 
I forgot about your insurance with your job.
I understand you don’t want to discuss your condition, but I think I’ve got a pretty good idea.
I don’t know the success of lamoctil for the other conditions it treats other than epilepsy, but I do hope you find a medication that helps. Also when you’re in a job you really like and feel valued that may also make a world of difference for you.

Yeah gabapentin is often used here for pain.
I was able to continue with COBRA for at least a month because I have some very important doctors' appointments that I need to keep. It's very expensive, though, but worth it because I've already met my OOP maximum so everything is no-cost. :)

Thanks for the well wishes on the job search. It can be intimidating, but I know I'll find something worthwhile. I'm also preparing to return to school in the summer.
 
I was able to continue with COBRA for at least a month because I have some very important doctors' appointments that I need to keep. It's very expensive, though, but worth it because I've already met my OOP maximum so everything is no-cost. :)

Thanks for the well wishes on the job search. It can be intimidating, but I know I'll find something worthwhile. I'm also preparing to return to school in the summer.
Good wishes all around, MissLeopard
 

Maya142

Moderator
Staff member
Lidocaine patches are actually available OTC in the USA now. Aspercreme and Icy Hot both have them and I think Salonpas even makes a version now.
Thanks for the tip!! It seems like the OTC ones are 4% and also contain menthol. Ours are 5% and are just Lidocaine. So they are pretty similar.

The nice part is that insurance pays if you have a script. My older daughter uses them daily on her back and my younger daughter is starting to use them more often for her ankles, so it helps that they are covered by insurance. But good to know that they are also OTC in case we ever run out.

Good luck with Lamictal - it is prescribed for pain but mostly after you have failed the common meds - Gabapentin, Lyrica, Elavil, Nortriptyline, Cymbalta, Savella etc. My daughter tried Trileptal but it made her too "fuzzy" and VERY confused so she had to stop it. It did help her with sleep though.
 
Thanks for the tip!! It seems like the OTC ones are 4% and also contain menthol. Ours are 5% and are just Lidocaine. So they are pretty similar.

The nice part is that insurance pays if you have a script. My older daughter uses them daily on her back and my younger daughter is starting to use them more often for her ankles, so it helps that they are covered by insurance. But good to know that they are also OTC in case we ever run out.

Good luck with Lamictal - it is prescribed for pain but mostly after you have failed the common meds - Gabapentin, Lyrica, Elavil, Nortriptyline, Cymbalta, Savella etc. My daughter tried Trileptal but it made her too "fuzzy" and VERY confused so she had to stop it. It did help her with sleep though.
You're welcome. If you want to stay away from menthol (I don't like it either), Aspercreme's version does not contain it as it is odor-free.

I had the same "fuzzy" feeling with Topamax that my neurologist prescribed for suspected vestibular migraines. Turns out, I don't have them anyway - I have cervical vertigo instead. I hate that fuzzy feeling so I hope it doesn't happen with Lamictal or any other medication I try. I already struggle thru brain fog thanks to fibromyalgia.
 
MissLeopard - since you’ve already reached your OOP max, you might as well get as many appointments as you can right now! I’d definitely get a second opinion. I can tell when a doctor has started to give up on me or doesn’t really care anymore. So that’s when I usually start looking for a new one. It’s frustrating that your doctor didn’t really give you many options; it sounds like she mostly just told you what she won’t give you. Now might also be a good time to try acupuncture and massage, if your insurance will cover it. This is a little more unconventional, but have you tried CBD oil? I’ve heard it works well for pain. And it’s something that you should be able to get even if marijuana isn’t legal in your state (it’s legal in mine now). I actually bought some CBD oil from a specialty pet store, which sounds totally weird hahaha. It didn’t end up really helping me, but pain is not my issue. Plus, they say it has no side effects (I didn’t have any, and I react to everything). I don’t know too much about fibromyalgia, so I’m sorry I can’t be of much help. I hope you can get a second opinion soon! I swear you could go to 10 doctors and get 10 completely different treatment plans. So you never know who might be the one to help you.
 
MissLeopard - since you’ve already reached your OOP max, you might as well get as many appointments as you can right now! I’d definitely get a second opinion. I can tell when a doctor has started to give up on me or doesn’t really care anymore. So that’s when I usually start looking for a new one. It’s frustrating that your doctor didn’t really give you many options; it sounds like she mostly just told you what she won’t give you. Now might also be a good time to try acupuncture and massage, if your insurance will cover it. This is a little more unconventional, but have you tried CBD oil? I’ve heard it works well for pain. And it’s something that you should be able to get even if marijuana isn’t legal in your state (it’s legal in mine now). I actually bought some CBD oil from a specialty pet store, which sounds totally weird hahaha. It didn’t end up really helping me, but pain is not my issue. Plus, they say it has no side effects (I didn’t have any, and I react to everything). I don’t know too much about fibromyalgia, so I’m sorry I can’t be of much help. I hope you can get a second opinion soon! I swear you could go to 10 doctors and get 10 completely different treatment plans. So you never know who might be the one to help you.
I bought some CBD oil from a health food store near me but it's so foul tasting that I've barely used it. I don't like coconut oil and it contains fractionated coconut oil and has a very bitter taste. I think I need to get some flavored stuff instead. :(

I still haven't heard from the 2nd rheumatology clinic so I'm not sure what's going on. I'm going to try calling one last time tomorrow.
 

Maya142

Moderator
Staff member
I had the same "fuzzy" feeling with Topamax that my neurologist prescribed for suspected vestibular migraines. Turns out, I don't have them anyway - I have cervical vertigo instead. I hate that fuzzy feeling so I hope it doesn't happen with Lamictal or any other medication I try. I already struggle thru brain fog thanks to fibromyalgia.
Fuzzy is how both my daughters describe Tramadol. They also say it makes them sleepy. Gabapentin causes "fuzziness" too. It seems like most of the meds we have tried that help with pain (and between the two girls, we have really tried most) do :(. They both hate it too.

If medical marijuana is legal in your state, my daughter's rheumatologist said it is likely to work better than CBD oil. Though she was talking about topical CBD oil, not the kind you ingest.
 
Hi everyone!

Just skimmed through the discussion on pain management and oh boy, it's a tricky one isn't it? The ones that work usually give you side effects and sometimes NOTHING works and you don't know what to do with yourself... Hope you figure something out.

Me, I'm home with the flu. Coughing hard and with a recently operated-on diaphragm that is... ouch.

Have a decent amount of good news for a change though; dryness has improved (could be because I'm full of flu mucous, who knows, but it's nice for now) AND I'm signing the contract for my BRAND NEW CONDO on Monday! :D So darn excited. Hopefully I'll be able to move in mid-April.
 
Hi everyone!

Just skimmed through the discussion on pain management and oh boy, it's a tricky one isn't it? The ones that work usually give you side effects and sometimes NOTHING works and you don't know what to do with yourself... Hope you figure something out.

Me, I'm home with the flu. Coughing hard and with a recently operated-on diaphragm that is... ouch.

Have a decent amount of good news for a change though; dryness has improved (could be because I'm full of flu mucous, who knows, but it's nice for now) AND I'm signing the contract for my BRAND NEW CONDO on Monday! :D So darn excited. Hopefully I'll be able to move in mid-April.
Congratulations on the dryness improving and on getting a condo. Take real good care of yourself. Hope you are better soon.
 

cmack

Moderator
Staff member
I hope everyone is doing okay, it's very quiet in here! I hope you all are behaving! (well not really..... because, I don't really like to behave :tongue: ) I have been working like crazy to push through my disability status. I'm finally getting somewhere, but there is still so far to go... oh well! I guess it's one step at a time. I just saw the doctor with papers Monday, now this coming Monday, more filling out papers with the doc. Soon we will probably be on a first name basis. I'll soon be an expert on the province of BC disability applications, that's for sure. LOL My best to all.:)
 
Hi everyone! Just checking in. I've been hanging out with my mom the last few days and I'm feeling much better - health-wise. I realized that one of my meds that had been increased in the last month was making me feel sedated and tired all the time so I talked to my doctor and she lowered the dose again (the higher dose wasn't helping, anyway; I felt no difference). Now, my energy is doing much better. My mom and I went to the zoo on Thursday and I wore my FitBit and did almost 8k steps! I was so proud of myself. I slept really good that night, too, from all the exercise and being out in the cool, fresh air.

Yesterday (Friday), we went shopping at TJ Maxx and had some fun. My legs and back were bothering me a little, though, because I stupidly wore my Minnetonka moccasins (which I love but they don't have enough support for walking over an hour). Still, we had fun together which made me feel good.

I'm having issues, however, with my insurance thru COBRA. The third-party administrator had an error on the website so my first payment didn't go thru and it showed me as "TERMINATED." As a result, my health insurance was made inactive and is taking forever to fix! I spent a long time on the phone yesterday trying to get answers about when it would be reactivated now that it shows "PAID" and didn't get much in the way of answers. I have a doctor's appointment next week that I've been waiting 3 months for (long waiting list) and I'm worried I may have to cancel it. I really need this appointment because I'm going back to school and I need to have documentation from a specialist for disability services since my old paperwork is over 4 years old. I'm hoping they will allow me to receive the testing and then bill my insurance when it is finally fixed, but I plan to call them Monday to hash out the details. Any prayers for a quick fix would be appreciated. My anxiety has been kicking my butt lately and I'm tired of worrying (so exhausting!).

Hope everyone is doing well!
 
Hi everyone! Just checking in. I've been hanging out with my mom the last few days and I'm feeling much better - health-wise. I realized that one of my meds that had been increased in the last month was making me feel sedated and tired all the time so I talked to my doctor and she lowered the dose again (the higher dose wasn't helping, anyway; I felt no difference). Now, my energy is doing much better. My mom and I went to the zoo on Thursday and I wore my FitBit and did almost 8k steps! I was so proud of myself. I slept really good that night, too, from all the exercise and being out in the cool, fresh air.

Yesterday (Friday), we went shopping at TJ Maxx and had some fun. My legs and back were bothering me a little, though, because I stupidly wore my Minnetonka moccasins (which I love but they don't have enough support for walking over an hour). Still, we had fun together which made me feel good.

I'm having issues, however, with my insurance thru COBRA. The third-party administrator had an error on the website so my first payment didn't go thru and it showed me as "TERMINATED." As a result, my health insurance was made inactive and is taking forever to fix! I spent a long time on the phone yesterday trying to get answers about when it would be reactivated now that it shows "PAID" and didn't get much in the way of answers. I have a doctor's appointment next week that I've been waiting 3 months for (long waiting list) and I'm worried I may have to cancel it. I really need this appointment because I'm going back to school and I need to have documentation from a specialist for disability services since my old paperwork is over 4 years old. I'm hoping they will allow me to receive the testing and then bill my insurance when it is finally fixed, but I plan to call them Monday to hash out the details. Any prayers for a quick fix would be appreciated. My anxiety has been kicking my butt lately and I'm tired of worrying (so exhausting!).

Hope everyone is doing well!
Prayers for you.
 

cmack

Moderator
Staff member
Let us know how it goes, I know things can be a struggle. I'm really glad to hear you got some fresh air and shopping in!

Cheers!
 
Hi everyone! Checking in, hope everyone's okay. Not jealous of those of you dealing with disability and insurance - it can be so tricky.

My physical state rapidly declined again after I had the flu and all my dryness symptoms came back with a vengeance. Very frustrated and upset. My GP is chalking it all up to stress when really the only thing stressing me out in life right now is that no one will help me out with my physical symptoms... He's not a good doctor and I'm going to try to find a new one.

Tomorrow I'm having my post-surgery EGD, under anaesthesia. After a number of failed scopes with sedation only they've opted to just put me under right away this time to not waste my time or their resources on things that don't work 75% of the time anyway. A little nervous to be put under again, it's never fun, but it's necessary so I'm just pushing through. Might be having a BRAVO pH study if they do see reflux damage at all tomorrow, if they do they will place the capsule to see how bad the remaining reflux is. I'm hoping not, I'm not keen on any more discomfort than I'm already dealing with.

The dryness is so intensely uncomfortable and disturbing and I don't really have any doctor helping me with it at all right now. I am seeing an optician on Tuesday since the dry eyes have started impacting my vision. Hopefully I will get some "proof" there that something is indeed wrong. A week from tomorrow I have an appointment with an ENT to check my salivary gland function. A week from that an eye specialist who commonly deals with patients who have Sjogren's - so he'll be able to refer me to a rheumatologist if he thinks my symptoms are consistent with that. So a lot is happening within a few weeks of now but I am very frustrated with the slow pace and also honestly sometimes with the quality of the care I am receiving (or not receiving as the case has often been...)

Have started considering seeking a second opinion at one of the major medical centers in the US. From the research I've done I'd be able to get all necessary testing done at some places there within a few weeks' time whereas where I am now I'm waiting approximately 3 months between doctor's appointments that are usually 5 minutes long and where the doctors are dismissive, rude, and ineffective.

I feel I am too young to waste months (years, really) of my life on dealing with ineffectual health care when it's possible that the problem could be treated or even completely resolved if someone with real skill took the time to really investigate what is going on...
 
Hi everyone! Checking in, hope everyone's okay. Not jealous of those of you dealing with disability and insurance - it can be so tricky.

My physical state rapidly declined again after I had the flu and all my dryness symptoms came back with a vengeance. Very frustrated and upset. My GP is chalking it all up to stress when really the only thing stressing me out in life right now is that no one will help me out with my physical symptoms... He's not a good doctor and I'm going to try to find a new one.

Tomorrow I'm having my post-surgery EGD, under anaesthesia. After a number of failed scopes with sedation only they've opted to just put me under right away this time to not waste my time or their resources on things that don't work 75% of the time anyway. A little nervous to be put under again, it's never fun, but it's necessary so I'm just pushing through. Might be having a BRAVO pH study if they do see reflux damage at all tomorrow, if they do they will place the capsule to see how bad the remaining reflux is. I'm hoping not, I'm not keen on any more discomfort than I'm already dealing with.

The dryness is so intensely uncomfortable and disturbing and I don't really have any doctor helping me with it at all right now. I am seeing an optician on Tuesday since the dry eyes have started impacting my vision. Hopefully I will get some "proof" there that something is indeed wrong. A week from tomorrow I have an appointment with an ENT to check my salivary gland function. A week from that an eye specialist who commonly deals with patients who have Sjogren's - so he'll be able to refer me to a rheumatologist if he thinks my symptoms are consistent with that. So a lot is happening within a few weeks of now but I am very frustrated with the slow pace and also honestly sometimes with the quality of the care I am receiving (or not receiving as the case has often been...)

Have started considering seeking a second opinion at one of the major medical centers in the US. From the research I've done I'd be able to get all necessary testing done at some places there within a few weeks' time whereas where I am now I'm waiting approximately 3 months between doctor's appointments that are usually 5 minutes long and where the doctors are dismissive, rude, and ineffective.

I feel I am too young to waste months (years, really) of my life on dealing with ineffectual health care when it's possible that the problem could be treated or even completely resolved if someone with real skill took the time to really investigate what is going on...
I hope you can start to feel better soon.
 

cmack

Moderator
Staff member
Hey Izzie,

I'm glad you are switching doctors and going to a better facility. Life is too short, we need to make moves, or nobody else will! Good for you, I know what it's like dealing with the wrong medical team... not cool! I really hope this is what is meant to happen and you will soon be enjoying life more, you deserve better.


Cheers,

Chris
 
Hey Izzie,

I'm glad you are switching doctors and going to a better facility. Life is too short, we need to make moves, or nobody else will! Good for you, I know what it's like dealing with the wrong medical team... not cool! I really hope this is what is meant to happen and you will soon be enjoying life more, you deserve better.


Cheers,

Chris
Thank you! I agree that it's about time, I've been unhappy with the state of things for a while now but I'm generally an agreeable person and don't like to make a fuss over myself, so I've put off making complaints or switching providers... Big mistake :p It seems very unnecessary that what is hopefully a very treatable condition is being ignored for months and months, causing unnecessary suffering and driving me freaking crazy :lol2:

I swear, I'm actually a sane person normally :ylol: Just being driven to madness by ineffective health care systems and uninterested physicians who'd rather twiddle their thumbs than do their jobs.
 
Hi Izzie:

Just wondering how the scope went. I was so hopeful after you reported that the dryness was better. I’m sorry it returned and so badly. I found the following article when I was thinking about what’s going on with you and thought it might help.

http://info.sjogrens.org/conquering-sjogrens/bid/353580/Sjogren-s-Vs-Sicca-Syndrome

From a quick read it seems that it can take years to get Sjogren’s diagnosed (sounds like a lot of these autoimmune diseases). I’m also sorry you have to find a new GP. I had to switch five years ago or so (my GP moved) and I don’t have as good a relationship with my new one. It can be frustrating. I’m hoping the scope went fine and that you’re not too tired from the anesthesia.
 
Scope was cancelled because for some reason I ended up in the ER; had the dryness of course but on top of it developed an allergic reaction to something (no idea what) and they had to treat me for potential anaphylaxis, got lots of cortisone and stayed for observation for a few hours. So no scope, and I was told that it will take 2-3 months for a new appointment.

Dryness is record horrible. I had some slight hope that the cortisone for the allergy would knock it out because that happened once before with this but that has not happened yet at least. I can no longer blink right because my eyelids stick to my eyeballs they're so dry. I do blink kind of, but not normally and it often sticks and hurts and burns. Have an appointment with an optician for "tear analysis" tomorrow, will see what results that yields.

Have been up tonight with weird tachycardia of unknown cause. Was given loads of cortisone so maybe it's that. Still have esophageal pain daily so I'm really really bummed that the scope had to be cancelled and that rescheduling will take so long.

Thank you for the link, Jabee, you've always been such a great resource and giver of good advice, I really appreciate that!

Sjogren's confuses me as I don't necessarily think I have any symptoms of it despite dryness, so that article is enlightening.

The going is tough, as they say, but I'm trying to push through. Your support and even completely unrelated conversation on here really does help a ton and I appreciate every one of you.
 
Update: Optician saw severe dryness and already visible damage to my eyes. The white part had scar tissue, and there was some mild corneal damage in one eye as well. She said I am at a risk for vision loss and this is NOT normal and she believes I must have an illness for this to become so severe in such a short period of time.

I'm very upset by this but also feel validated. She printed out her evaluation for me to bring to my GP as "proof" that this is not stress and I'm not making anything up.

I can't imagine losing my vision... She did give me ointments and drops and everything to try to help halt the damage. But if you don't get at the cause, it's not going to end well.
 
Update: Optician saw severe dryness and already visible damage to my eyes. The white part had scar tissue, and there was some mild corneal damage in one eye as well. She said I am at a risk for vision loss and this is NOT normal and she believes I must have an illness for this to become so severe in such a short period of time.

I'm very upset by this but also feel validated. She printed out her evaluation for me to bring to my GP as "proof" that this is not stress and I'm not making anything up.

I can't imagine losing my vision... She did give me ointments and drops and everything to try to help halt the damage. But if you don't get at the cause, it's not going to end well.
Sending prayers your way.
 
Good grief, Izzie. It’s a sad day when you have to offer proof you are sick to your own doctor, GP or specialist alike. I am so sorry your eyes have already been damaged by this severe dryness. Will your GP be willing to prescribe for Sjogren’s just to see if an immunosuppressant will help? I believe Plaquenil and methotrexate are used for Sjogren’s. You clearly need treatment to help prevent the dryness, not just ease the symptoms. Do you have an appointment to see your GP, or an endocrinologist, or an immunologist? I hope your eyes at least begin to feel better. I have double vision and at times vision issues stemming from chronic migraines, but no real physical damage. What you have is very distressing. Please try to take it easy.
 
Good grief, Izzie. It’s a sad day when you have to offer proof you are sick to your own doctor, GP or specialist alike. I am so sorry your eyes have already been damaged by this severe dryness. Will your GP be willing to prescribe for Sjogren’s just to see if an immunosuppressant will help? I believe Plaquenil and methotrexate are used for Sjogren’s. You clearly need treatment to help prevent the dryness, not just ease the symptoms. Do you have an appointment to see your GP, or an endocrinologist, or an immunologist? I hope your eyes at least begin to feel better. I have double vision and at times vision issues stemming from chronic migraines, but no real physical damage. What you have is very distressing. Please try to take it easy.
I have three appointments coming up. ENT in a week, phone call with the GP the day after, and then an opthalmologist another week after that. I think any of them should be able to refer me to a rheumatologist. I doubt my GP will prescribe anything, he's a horrible person :p And I'm still looking to make a switch honestly it's just since I'm moving soon anyway I want to try to wait until then, it's only about 3 weeks from now. If the ENT sees abnormal dryness as well then I will have a lot of reasons why my GP should refer me so I'm hoping he'll see reason. If not, I think I'll demand a second opinion from one of the other doctors at his office before I move...

I got a lot of treatment stuff from the optician. Ointments and heat masks and gel drops and all maner of concoctions. I hope they at least help halt the rapid pace at which I am getting damage, and hopefully will help the discomfort with continued use for a while.

She also told me actually that the three main causes she sees for issues as severe as mine is Sjogren's, going on new medication, or STOPPING a medication - which I have recently done. It was when I started messing with my dosage of PPIs after surgery that this started. And before, this has happened twice when I've changed brands or gone on a new PPI. Of course, those times it actually went away after a week or two at most and now it's been two MONTHS. So who knows. I at least have some hope that it might just go away.
 

Maya142

Moderator
Staff member
Izzie, I would ask for a rheumatology referral right away.

Do you have any joint symptoms - pain, swelling, stiffness?

It does sound like it could be Sjogrens. I know they definitely use Plaquenil and MTX for it, like Jabee said and when it's severe, Rituxan (which is an infusion).

I am sure you've tried this, but for dry mouth we have a mouthwash called Biotene in the US that is OTC. My daughter has been on medications that cause dry mouth for years and has been using that.

You also need to be followed by a dentist, because you get more cavities with dryness.
 

cmack

Moderator
Staff member
My best to you Izzie. I'm glad at least that someone finally noticed what was going on. I really hope the drops prevent further damage in the short term, I'm praying for a good outcome for you.
 
Izzie, I would ask for a rheumatology referral right away.

Do you have any joint symptoms - pain, swelling, stiffness?

It does sound like it could be Sjogrens. I know they definitely use Plaquenil and MTX for it, like Jabee said and when it's severe, Rituxan (which is an infusion).

I am sure you've tried this, but for dry mouth we have a mouthwash called Biotene in the US that is OTC. My daughter has been on medications that cause dry mouth for years and has been using that.

You also need to be followed by a dentist, because you get more cavities with dryness.
I've had joint pain since I was a child, and I still do, but it hasn't gotten worse (or better). No swelling or stiffness really. I also have NO fatigue or any issues like that which seems strange if I have autoimmune disease but I guess it's possible. I've been trying to get a hold of Biotene here but I can't seem to find it. The stuff I've found here has been pretty useless. Maybe I could make an international order :D

That's a good idea with the dentist, thanks! I'll make sure to go see my dentist when I can.
 
I saw my psychiatrist on Monday after my insurance was finally reinstated on Friday (she had a cancellation, YAY!). We talked about my worsening mood swings and she agreed to let me try a mood stabilizer as we had discussed in the past. I've agreed to try low dose Seroquel (regular strength, not XR) since Lamictal is contraindicated in people with autoimmune disorders due to risks of agranulocytosis and/or aseptic meningitis. The only thing is that my pharmacy flagged it since there is a potential interaction with the antidepressant I'm on but my doctor and I agree the benefits outweight the risks and I'm waiting for the medication to be pushed thru so I can start it. Hopefully, it will be filled today (Wednesday). My insomnia has been particularly bad lately and she said taking the Seroquel at night will probably help me sleep.
 
MissLeopard - I hope the medication works for you! Not being able to sleep really worsens any issue you have; physical and mental alike.

As for what's new for me, well... I yelled at my GP :p And he actually listened, so that was good. Eye doctor on Monday, dentist is going to test my saliva, having new bloodwork etc.

This dryness stuff is strange though. My dry mouth has definitely gotten better since I went off the PPIs but then it plateaued at this level where it's... okay, but definitely not normal. My eyes have gone downhill consistently for the past few weeks until yesterday when they suddenly felt normal. Today they're bad again. Everyone has a different theory. GP and surgeon think Sjogren's (or just stress, which it clearly is not...), ENT thinks it's still a lingering medication reaction, or allergies which he tested for.

A medical mystery, that's me :p

We're having lovely sunny (but cold) weather here the past few days. I'm taking advantage of it and visiting family in the middle of the week, as you can do when you're on sick leave.
 
Sorry I haven't been around much but I have been reading to keep up with how everyone is doing :)

MissLeopard I hope the new medication helps and you're able to get some sleep soon, sleep deprivation really does make everything so much harder doesn't it.

Izzie I'm glad you're finally getting listened to by the various medical professionals but I'm sorry it's come to that with your eyes. I hope they can figure it out before the damage causes vision loss. Well done for standing up to your GP, I know how hard that is!
 

cmack

Moderator
Staff member
The third doctors appointment in as many weeks for me tomorrow. Yay! Well, I guess he's a really nice guy, that's always a plus.
 
I'm so sorry there are so many others here that are still undiagnosed. I just found this part of the forum and will make sure to check in once in awhile.

My short story:

I've been dealing with severe stomach cramping, frequent diarrhea, 3-5 bm's a day that are soft and sticky when not diarrhea, mouth sores and a perianal fistula. I've had most of these symptoms most of my life. When I was 20 I had a colonoscopy and nothing was found. I am now 32 and had another colonoscopy about a month after my fistula surgery and again nothing was found. I am now waiting on results from blood tests and breath tests.

There is a family history of Crohn's as well as diverticulitis and one of my great-aunts has also been struggling to get a diagnosis for her digestive issues as well (they told her she had Crohn's for about a year but are now saying it's not Crohn's).

I hope everyone is able to get answers soon!!
 

cmack

Moderator
Staff member
Welcome MorningBell,

I'm sorry for your need to be here, but I'm glad you found us. Feel free to join in any time.
 
I haven’t written (or read) in a while.....I broke my phone so I was a little disconnected from the world. But now it’s mostly working again, and I was able to catch up.

Izzie - What in the world is going on with you? It makes me so mad that your doctor has said that your symptoms are from stress. That literally doesn’t make any sense at all. I’ve never heard of anyone having those types of symptoms because of stress. But as most of us know, doctors typically use that as a cop out when they don’t want to admit that they don’t know what’s going on. I’m glad that it sounds like some people actually see that there’s something going on with you, so hopefully that means they’ll figure it out soon. It really sucks that your scope had to be rescheduled. You’d think they’d figure out a way to squeeze you in sooner. But at least you can look forward to moving into your condo soon! We need to create our own Facebook group so you can post pictures of it. :) Well if you don’t suck at technology like I do, then you could probably figure out how to post pictures on here. You’d think as a “millennial” I’d be better at technology. But I had a broken phone for weeks, and it’d still be broken if it weren’t for my husband. Keep us posted on how your appointments go.

I don’t really have much to report on me. I’ve been extra dizzy and lightheaded lately. Like every time I stand up I end up needing to hold onto something to steady myself. I’m guessing it’s from the meds I’m taking. My doctor did mention that I needed to make sure to replenish my electrolytes. So I’m trying to do that more now, and we’ll see if it helps. I don’t know about you guys, but I’m so ready for Spring! I planted some seeds (inside) a couple weeks ago, and it’s been so sunny lately. Now if the snow would just hurry up and melt....
 

Lynda Lynda

Senior Member
Izzie, I would ask for a rheumatology referral right away.

Do you have any joint symptoms - pain, swelling, stiffness?

It does sound like it could be Sjogrens. I know they definitely use Plaquenil and MTX for it, like Jabee said and when it's severe, Rituxan (which is an infusion).

I am sure you've tried this, but for dry mouth we have a mouthwash called Biotene in the US that is OTC. My daughter has been on medications that cause dry mouth for years and has been using that.

You also need to be followed by a dentist, because you get more cavities with dryness.
My sister has Rheumatoid Arthritis, Sjogrens, Lupus.....and bad teeth. Biotene is useful.
 
Hi everyone! Hope everyone had a pleasant Easter. It was a regular day for me yesterday, unfortunately, as both my mom and I were laid up feeling ill. My pain is worsening. Saturday night, I had swollen, sore fingers on my left hand. The knuckles were very sore and I don't know if it's autoimmune related or fibro-related. I didn't do anything to injure them. I have an appointment with my rheumy tomorrow but I'm not optimistic - she seems like she wants to stuff me with muscle relaxers instead of trying anything else and they don't work very well. I found another rheumy right down the street from me that I may see for a 2nd opinion since I never did hear back from the other one I found. We'll see how tomorrow goes.

Also, the Seroquel is working very well but I need to switch antidepressants. I am on Celexa and it's not helping but it's making me gain a TON of weight. I've gained 20 lbs which is a known side effect of Celexa. Seroquel hasn't increased my appetite, thankfully. I'm planning to ask my psychiatrist to switch me to Pristiq or Effexor since we've discussed this and they do not cause weight gain and may actually help with chronic pain (my mom is on Effexor for pain and said it has really helped her).

Also, I'm looking into getting a gym membership so I can take water aerobics since that is really good on the joints. I want to get back into swimming, too. :)
 

Lynda Lynda

Senior Member
I saw my psychiatrist on Monday after my insurance was finally reinstated on Friday (she had a cancellation, YAY!). We talked about my worsening mood swings and she agreed to let me try a mood stabilizer as we had discussed in the past. I've agreed to try low dose Seroquel (regular strength, not XR) since Lamictal is contraindicated in people with autoimmune disorders due to risks of agranulocytosis and/or aseptic meningitis. The only thing is that my pharmacy flagged it since there is a potential interaction with the antidepressant I'm on but my doctor and I agree the benefits outweight the risks and I'm waiting for the medication to be pushed thru so I can start it. Hopefully, it will be filled today (Wednesday). My insomnia has been particularly bad lately and she said taking the Seroquel at night will probably help me sleep.
I take Seroquel every evening. I have taken it for years. My current dose is not super high but I still do not sleep well. If I take a larger dose then I get brain fog the next day and wouldn't even drive in the mornings. I don't want to be in a brain fog all the time, I want to be coherent.

You mentioned Lamictal, which I have been taking a long time too. Thank you for sharing your information about it, no one ever said anything to me about Lamictal and autoimmune disorders.

Wishing you well.

Lynda
 
I take Seroquel every evening. I have taken it for years. My current dose is not super high but I still do not sleep well. If I take a larger dose then I get brain fog the next day and wouldn't even drive in the mornings. I don't want to be in a brain fog all the time, I want to be coherent.

You mentioned Lamictal, which I have been taking a long time too. Thank you for sharing your information about it, no one ever said anything to me about Lamictal and autoimmune disorders.

Wishing you well.

Lynda
I noticed the Seroquel isn't particularly helpful when it comes to the insomnia as far as getting to sleep earlier. I noticed, however, that the quality of sleep is better because I'm sleeping deeper and not tossing and turning like usual. A side effect of that, though, is that I wind up waking up in pain because I've been laying on the same side too long. It's not too bad, though, and usually calms down after a while.

Yeah, I was surprised about the Lamictal, too. She said it wouldn't cause weight gain like the Seroquel could but she did not want to start me on it before consulting with my rheumatologist. Apparently, the potential for low WBC is pretty high which can be harmful for AI disorders.
 
Hi everyone! Hope you're all well.

Nothing much has happened on my end. Still waiting for a scope, still waiting for some doctor to give a crap. Had a saliva test that was very abnormal, that's about it. Still dry everywhere, comes and goes in a weird way unrelated to anything else. Oh and my reflux is back. "Fun"... It's back full force, like I never even had surgery to begin with. I don't have stabbing chest pain or uncontrollable belching like I used to but other than that I feel exactly the same. Constant, unbearable burning in the chest and throat. Can't tolerate many foods at all.

At least I got the keys to my new place. Doing some painting this week and hopefully I'll be able to move in in another week or so. I love it, it's so sunny and bright! My current place is a depressing bat cave in comparison :p
 
Hi everyone! Hope you're all well.

Nothing much has happened on my end. Still waiting for a scope, still waiting for some doctor to give a crap. Had a saliva test that was very abnormal, that's about it. Still dry everywhere, comes and goes in a weird way unrelated to anything else. Oh and my reflux is back. "Fun"... It's back full force, like I never even had surgery to begin with. I don't have stabbing chest pain or uncontrollable belching like I used to but other than that I feel exactly the same. Constant, unbearable burning in the chest and throat. Can't tolerate many foods at all.

At least I got the keys to my new place. Doing some painting this week and hopefully I'll be able to move in in another week or so. I love it, it's so sunny and bright! My current place is a depressing bat cave in comparison :p
I hope you can get a scope soon and get some answers
 

cmack

Moderator
Staff member
I hope things improve with the burning, Izzie. I'm glad you like the new place so much, at least something is going your way.
 
Hi everyone! Hope you're all well.

Nothing much has happened on my end. Still waiting for a scope, still waiting for some doctor to give a crap. Had a saliva test that was very abnormal, that's about it. Still dry everywhere, comes and goes in a weird way unrelated to anything else. Oh and my reflux is back. "Fun"... It's back full force, like I never even had surgery to begin with. I don't have stabbing chest pain or uncontrollable belching like I used to but other than that I feel exactly the same. Constant, unbearable burning in the chest and throat. Can't tolerate many foods at all.

At least I got the keys to my new place. Doing some painting this week and hopefully I'll be able to move in in another week or so. I love it, it's so sunny and bright! My current place is a depressing bat cave in comparison :p
Have you been tested for hypochlorhydria (aka low stomach acid)? The odd thing about reflux is that most people are under the impression that their stomach is producing too much acid, when really, the stomach is not producing enough. If you have Sjogren's syndrome, that could cause low stomach acid, as well. Just a thought. You could try taking betaine HCL as a supplement and see if that helps resolve your symptoms.
 
Hello fellow undiagnosed's :) must admit I just had to come on here for a bit of a whinge, I apologise in advance. I've had a gradual re-introduction of symptoms, and now getting bad stomach pain on and off this last week. It's frustrating because I believe I would have been on an oral mesalazine for maintenance after my initial suppositories, which worked very well, but due to the disruptive weather I had to cancel my appointment last month, which got moved all the way back to July, after ringing to say my symptoms are returning it's been moved forward again and I'm waiting till next week now.

I've skipped lunch in the hope it might ease up the pain and I'm just trying to drink plenty of water, no caffiene, no carbonated drinks (which I don't anyway to be honest, just gluten-free beer some evenings). The pains had been coming and going previously but today I seem to be in constant stomach pain, wish I could fast forward time and see the GI already!
 
Izzie this might seem a bit left field but have you considered a gastric emptying study to see if your stomach is emptying properly? Just asking as reflux is one of my worst gastroparesis symptoms especially without lansoprazole twice per day. It's literally my body going "well it won't go down so let's send it up". Just a thought :)
 
sarahfh, how are you doing? Did they place a GJ or a J tube yet? I have been meaning to message you!
I'm doing okay thanks, I finally had a GJ tube placed on February 27th, it's been a bit rocky with an infection in it so I've had weeks of iodine dressings and antibiotics and I'm still getting puss draining from it which is frustrating. But overall it's so much better than the NJ was!
Recovery hasn't been too bad either, I was in hospital one night then home taking it easy. I did have to take tramadol regularly and I'm just starting to wean off that now there is no pain from the infection. I tried to stop as only been on it at a small dose (50mg twice a day) but I went into withdrawal already so I have to wean instead. That's pretty frustrating I didn't expect within a few weeks my body would become dependant on it!
Not managing as much liquid orally but suspect that's related to the tramadol slowing things down further so hoping that will come back a bit over the coming weeks.
But otherwise all is going well! How are you and the girls?
 

Lynda Lynda

Senior Member
Izzie this might seem a bit left field but have you considered a gastric emptying study to see if your stomach is emptying properly? Just asking as reflux is one of my worst gastroparesis symptoms especially without lansoprazole twice per day. It's literally my body going "well it won't go down so let's send it up". Just a thought :)
This is true. I waited out a terrible heartburn/ reflux situation the other evening. Finally had a major bowel movement and the heartburn / reflux toned down.
 
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