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04-18-2017, 10:52 PM   #1
Kamastel
 
Join Date: Feb 2015
Misdiagnosis

I'm looking for opinions or maybe similar frustrations?

I am a 28yo female. I have had Crohn's for 15 years. The disease hasn't been very well controlled until this last year. Colonoscopy 16 mo ago finally showed NED. Unfortunately over a little less than a year my joint pain has slowly increased and progressed to muscle pain, headaches, fatigue etc. I saw rheumatology about 9 mo ago. Labs and X-rays were negative. Sulfasalazine was started but stopped quickly due to side effects. They said they couldn't do much more so GI has pretty much just had me on tramadol ever since. They did check my remicade levels and antibodies levels and that was all good.

Fast forward to now I did enough fussing and advocating for myself and got a referral to a different rheumatologist in town. I feel like she basically wrote me off and said I have fibromyalgia. I guess I'm not buying it. I feel like it's a cop out.

Has anyone had similar issues with their crohn's? Any ideas what else this could be?


04-19-2017, 09:25 AM   #2
ronroush7
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I think I am going to tag Maya 142
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-19-2017, 11:13 AM   #3
Maya142
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Are you still on Entyvio? My daughter just started it in early March. After 2 infusions, her joint pain increased a LOT. She was miserable and in so much pain. She also got a rash on her face. After some testing (blood work), her rheumatologist determined that Entyvio caused drug-induced Lupus and has stopped it.

She already has an arthritis diagnosis (Ankylosing Spondylitis), but this was different.

There are also studies that show that Entyvio can just increase joint pain or even induce arthritis.

I would talk to your GI about that.

I would also look into Spondyloarthritis (which is the type of arthritis associated with Crohn's) - x-rays can be negative because x-rays only show damage and not inflammation. Damage can take up to 10 years to appear on x-rays, so if it is in the early stages, then x-rays would look perfectly normal. An MRI would show inflammation.

Typically with spondyloarthritis, the SI joints and hips are involved, but really any joint can be involved (knees, ankles, heels, fingers etc). Morning stiffness is common and so is pain that gets better with movement.

To be completely honest, your symptoms do sound more like fibromyalgia than arthritis. Muscle pain and headaches are very common with fibromyalgia. The medications used for fibromyalgia would be different than those used for arthritis - something like Lyrica, Gabapentin - so it would be best to rule out arthritis first.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-19-2017, 11:46 AM   #4
Kamastel
 
Join Date: Feb 2015
I'm no longer on entyvio. After that magic 26 week number I was by improving and was switched to remicade. I be been on it for about 2 years now. My joint pain probably initially started around when I was on entyvio but never went away and since increased.

Some of my symptoms definitely do fit with fibromyalgia but I'm really frustrated. The rheumatologist told me to exercise more and sleep better. If that didn't work she would prescribe depression medication. I know I don't exercise enough, I am sleeping more than normal and am still exhausted but I don't feel at all depressed just really frustrated. Are trying antidepressants for the pain relieving effects going to be worth their endless side effects.

GI did offer to send me back to Mayo. Maybe that would be worth the peace of mind if anything?

Thanks for your reply and the info!
04-19-2017, 11:54 AM   #5
Maya142
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For fibromyalgia, they would use antidepressants at lower doses. For what it's worth, both my daughters have been on antidepressants for pain, and neither has had significant side effects. My older daughter has been on Cymbalta and Elvail (only side effect was constipation) and my younger one has been on Nortriptyline. She has also been on Lyrica and Gabapentin, which are anti-convulsants.

She had no side effects at all with Lyrica and some sleepiness with Gabapentin. For her, the meds didn't work very well, unfortunately. She did do a pediatric pain rehab program, which was intensive PT and OT and pool therapy and that helped a LOT.

I know it's really, really, really hard to even think about exercising when you feel awful, but it really helps! Often I have to drag her to the pool, but once she is there, she always feels better.

I'd start small - go for a walk, or a short swim.

And I would also get another opinion from a rheumatologist. If it's arthritis, Remicade should help but you may need additional medications, like Methotrexate. Do you have any swollen joints? Morning stiffness? Red or warm joints? Those would be signs of inflammatory arthritis.

If it's fibromyalgia, then you would have muscle pain, fatigue, trouble sleeping and joint pain. Sometimes stiffness. No inflammation. All over pain and feeling awful is common.

Sorry - I know this is very frustrating. Pain syndromes are especially hard to deal with, in some ways.
04-19-2017, 11:01 PM   #6
Kamastel
 
Join Date: Feb 2015
This unfortunately is the second rheumatologist I've seen. She said there isn't any inflammation in the joints from what she could tell on a physical assessment. I do have morning stiffness and "joint pain" but it's accompanied by the muscle pain and fatigue now. I definitely don't have trouble sleeping other than sleeping way too much.

I definitely need to increase my exercise. I know it doesn't technically count but I am constantly running at work (I'm a nurse). Being exhausted after a long shift and like you said, in pain, makes it difficult to make myself exercise some days.

A lot of the symptoms do sound like fibro. I think maybe what I'm more frustrated about is that the doctor really had no suggestions for controlling the pain so that I can be more active and not have headaches that cause me to miss work. Thankfully I see my primary and GI this next week. Maybe they'll have some better suggestions.

Your girls are very lucky to have you. It's sounds like you are a great advocate for them. Thanks again for the advice!


04-20-2017, 11:52 AM   #7
Maya142
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I just wanted to add - sometimes a GP or pain management doctor will treat fibromyalgia. It doesn't have to be a rheumatologist.

The other thing that really helped both my girls was muscle relaxants, but that was for pain and trouble sleeping.

Hang in there and good luck!!
10-03-2017, 02:57 PM   #8
swamper
 
Join Date: Sep 2016
Location: Russellville, Arkansas
I have a diagnosis of enteropathic arthritis which by definition is arthritis that occurs in conjunction with an IBD. In my case Crohn's. Up until this last year my arthritis was in my back but now I have pain in my feet, knees and hands. My rheumatologist recently started me on methotrexate to help bring the arthritis under control. Right now the only thing that keeps me functional is low dose prednisone (10 mg). I'd look into prednisone to get stuff under control and hopefully you can find another medication that will keep your arthritis manageable in the future. Good luck.
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Male, Age 52
Diagnoses: colitis symptoms since age 19; ankylosing spondylitis age 28; ulcerative colitis age 36; chronic pain age 42; enteropathic arthritis age 49; Crohn's disease age 50; high blood pressure age 51
Medications: Methotrexate, remicade, gabapentin, oxycodone, losartan, folic acid, prednisone
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