Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Fibromyalgia http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1402274226 Message started by LilyBee on 06/08/14 at 13:37:06

Title: Fibromyalgia
Post by LilyBee on 06/08/14 at 13:37:06

I was diagnosed with Fibromyalgia about 8 years ago. I was just diagnosed with MCAS in March, but I've been having the symptoms on and off for years. I'm at the point where I'm trying to coordinate my immunologist, pain specialist and rheumatologist for treatment, but it's so hard to know which illness to attribute which symptoms to. Both are complex, poorly understood diagnoses and even I struggle sometimes.

Does anyone else manage these illnesses together? If so, do you have any tips?

Title: Re: Fibromyalgia
Post by mikev on 06/09/14 at 07:47:17

lily:
i've come to believe over the years my foot sensitivity & pain is fibro whereas the other skin sensitivity is sm. bascically handle fibro with just tramadol & tylonal-not the best option in the world but true opiod base meds cause trouble for my sm as well as does lyrica or cymbalta. for my sm norm h1, h2 then use ketitofen, only drug that has helped at all but does nothing for the feet, is the reason i think they are fibro. only drug at all on horizon is a drug called mastinib but it failed a phase 3 quality test late last year. my doc was one of the docs the fda had testing it for asthma & but sm usuage looked somewhat promising as my doc was going to get me approved, since i really have asthma, but not chronic so couldn't be part of his test group, hate to have him risk lose some funding just to help out a 7 yr patient that could have been a real test.obviously i was incensed for his callousness but why should i have been surprised, he's been that way for 7 yrs, but no alternatives where i live.
mikev