fibro-like issues?

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Date Joined Feb 2018
Total Posts : 5
   Posted 2/28/2018 3:50 PM (GMT -6)   
Hi All - I thought I would seek info from anyone else who has had similar symptoms that are possibly associated with fibromyalgia- I will try keep it short:

Was diagnosed with colitis in 1996. Have been on remicade for 6 years now - it saved my colon.

about 3 years ago, I started experiencing 'myalgia' confined to my back and shoulders. It comes and goes. Over the past 3 years it has exacerbated such that the stiffness/soreness in my muscles will extend into my legs, chest, arms, wrists. It seems to include joints/soft tissue as well as muscles. It will shift/move from an area of my body on a given day to another area the next day.

In the past year, what seems to accompany the myalgia issues is dryness in my nose, lips and eyes.

I will have periods of up to a month or so where I feel pretty good. However, I will then be hit with a bout of the above symptoms. Often accompanying the above systems is lethargy and exhaustion.

I did get referred to a rheumatologist who has done a raft of blood work a few times - initially it was thought that my body had developed antibodies to remicade. That is not the case based on blood work. My rheumatologist is stumped. I brought up fibromyalgia and she was dismissive of the notion of fibromyalgia. I have tried various muscle relaxants. They do nothing at all.

I thought I would post this on the off chance that someone else out there has had the same issues with a diagnosis? There is some discussion about taking me off remicade but not sure on this idea just yet.

Any feedback would be appreciated as I am feeling lost. Thanks,

Forum Moderator

Date Joined Apr 2005
Total Posts : 17895
   Posted 2/28/2018 9:52 PM (GMT -6)   
Hi, JoeyBats, and welcome! Perhaps you are dealing with an autoimmune problems called Sjogren’s Syndrome. Here are a couple of links about this illness.



See if this sounds like what you are experiencing. I’m so sorry you are having these problems. Do let us know what you find out because we do care about you.

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
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