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,