Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength
Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Past meds: Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Pred, Asacol, Prevacid, and the list goes on. Currently on Humira every 2wks, Pentasa, Tapering Prednisone now.
Post Edited (kellieak) : 8/5/2008 3:51:08 PM (GMT-6)
I had one doc tell me straight off that there is no such thing as fibromyalgia, I left in tears. My current doc wont even use the term he says we will just call it nerve pain. One part of him trusts me and he wants to beleive, the other thinks im exagerating Whenever i go to doc I get very sick and syptoms worsen because each time its like having to prove it, how can you prove it....I finally have a rhuematologist who does beleive which helps and im going to tell my doc of this site, so he knows its not just me.
my symptoms- intense burning in neck, skin sensativity to clothing, sheets ect. muscle spasms.
Hi Songstress! Several years back I was forced to switch doctors because of a total change in our company's health insurance carrier.....from Blue Cross to United. I had reached dead ends with all of the previous doctors.....in fact I had never even heard of the terms fibromyalgia or chronic fatigue syndrome until after that switch. The other ones ran many tests which showed only hypothyroidism, hypertension and minor depression and I started taking meds for them and got them under control. I still felt little or no change in symptoms so they ran even more tests which produced only normal results.
Then, the insurance switch occurred and I found a younger doctor, an internal medicine specialist who was on the PCP list, who actually talked with and listened intently to me.....the best "bedside manner" I had ever seen in a doctor. He suggested several tests that I had never had before and discovered a testosterone deficiency, high cholesterol, heart arrythmia and a positive ANA count.....an indicator of an autoimmune disorder. So, I started meds for the cholesterol & arrythmia and testosterone injections every two weeks. He ran further tests on the positive ANA to rule out lupus, rheumatoid arthritis and other possible autoimmune diseases. Those were all ruled out so HE is the first one who mentioned fibromyalgia and chronic fatigue syndrome and suggested seeing a rheumatologist (even gave me a couple names) for more specialized testing but went ahead and listed fibromyalgia as my dx and began treating the symptoms. I didn't take his advice on the rheumy until June of this year when the symptoms finally became so bad I could no longer keep them under some kind of control and "just live with them".
After googling rheumys in my city, I centered only on those who specialized in fibro or cfs. So, I selected my current rheumy (one of those he suggested who actually specializes in fibromyalgia, chronic fatigue syndrome and autoimmune disorders) and after she ran much more specialized tests to rule out other possibilities, dx'd me with fibro, cfs and cebv (chronic epstein-barr virus) and started me on a therapy she researched and devised - glutathione/atp injections. Except for one minor flare, I feel the best that I've felt in years and am continuing on the injection regimen with testing every 6-7 weeks to check for any changes/improvements in anyl of the test "numbers". That's where I am at the moment and consider myself extremely fortunate to have found her!
Gentlest of hugs,