Hi, I have fibro too, have had the horrible muscle pain and cramping for 5 yrs or more. I got diagnosed and treated for thyroid, then Mono, and dr thought I had Lupus. Then it wasn't lupus.
I kept reading about Lyme, and I had been bitten by a tick on the head. the only way I remembered it was that my hubby told me he had to pull the tick out of my scalp for me one day. Tested pos bands on the lyme test. no dr here in OHio would treat for lyme so I drove to a neighboring state. 8 months of antibiotics. Also B12 shots. Dr was to a point he would have given me IV abtibiotics but I was somewhat scared so I said I would maybe be back. Then I started vitamins and other things (exercise.)
Meantime, with all the fatigue (nap totally required about every day at 3 pm till 6 pm!!!!) had a sleep study. That dr said EDS (extreme daytime sleepiness) and gave Nuvigil/Provigil.
Then I was diagnosed with Fibro for 2nd time. The first time I was in denial because I felt there was no hope once I would allow the diagnosis of it LOL
I went to a specialist, got put on Savella and still on it -- 8 months now? It helps me a lot but has raised my blood pressure and makes my Raynaud's worse. Also the sweating is rough.
Last week I was looking at a website on milk. ONe member had shared that they stopped eating all cheese/milk/yogurt/whey and dairy totally. And after a week their muscle pain was immensely better.
I looked at that and decided I would try it. I mean, I'm off wheat now for months and it didn't seem to help that much, although the migraines have stopped. But still had muscle pain.
So it is 6 days off milk. And by the 4th day I could tell the difference. The pain was much much better!!!!
I am still on Savella. But after Christmas I am going to try getting off it too. I think this is the key, it was milk all this time.
It's still early but I am praying this is the answer.
Has anyone else tried to eliminate milk?