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.
Re: Hi, Anyone here trying diet changes for fibro?
Hi, Sophie56,
Surprisingly, dairy is in a lot of things! It includes butter, whey, and lactose, which may be ingredients in food bars, cookies and more. This change in diet involves a lot of label reading. Even non-dairy creamer includes sodium caseinate--which is a milk derivative. Cheese and yogurt also made from milk. I love cheese and yogurt and milk. Don't really want to quit eating them BUT the benefits are so great!!!!!
I had a daytime sleep study last summer, and when the results showed EDS (extreme daytime sleepiness) I guess once the dr. prescribed Provigil, the insurance finally agreed to cover it. There was some paperwork that had to be done first, I don't recall the details of it.
Have you tried Provigil? I am somewhat energized by the 150 mg Savella I take also.
But -- here's a shocker-- the fatigue seems to be lifting also, as long as I stay off milk products.
Re: Hi, Anyone here trying diet changes for fibro?
My daughter in law is on a glutten free diet, she feels so much better now. Im planning on going on it right after New years day. She is sending me all her knowledge on the subject, her diet, do's and dont's , i do know she gave up all dairy as well. Hopefully i will notice some change in my fibro when im on that diet. will let you all know how it goes.
Re: Hi, Anyone here trying diet changes for fibro?
I eliminated (well 90 per cent of) wheat, dairy and refined sugars for 4 weeks before Christmas - have fallen off the wagon for a bit with Christmas (but nowhere near as bad as previous years) and am getting right back on that wagon New Years day too - diet will consist again of fruit, veg, fish, chicken, nuts - all organic and 3 litres of alkaline water
Re: Hi, Anyone here trying diet changes for fibro?
krlsgrl and others, I am not very knowledgeable about nutrition....never really need too until the last few years. How do you find a good diet? Is there a specific fibro diet. I hurt too much to exercise. I want to keep saying I will and decide I am hurting too bad...for everyday I am fairly active I spend 2 days in bed afterwards.
I have used provigil and nuvigil. They basically just wake me a little and I am more alert. Certainly not a miracle worker but help.
Re: Hi, Anyone here trying diet changes for fibro?
HI, Sophie56!!
I am not sure what diet your dr. or a nutritionist would advise for you.
For me, since I am cutting out milk and dairy totally, I am taking a calcium supplement. And other than that, I try to eat mostly vegetables and fruit while making sure I get enough protein.
I'm also taking omega 3 fatty acids-- lots. And many other supplements (not prescribed but the fibro specialist is aware I take them, and he did not say not to!!! LOL) I take vitamin D3 -- 1,000 IU a day. When my D levels were checked by the MD last yr., they were so low that she gave me a prescription supplement to take 1 a week for several wks to get my levels built up to normal.
Plus, I take coQ10 - 100 mg daily.
I'm aiming for 50 - 60 mg protein a day.
Re: Hi, Anyone here trying diet changes for fibro?
I gave up simple sugars in the summer and felt so much better. Since the holidays have come around, I have been indulging some in sweets, not a lot but enough where I see a big difference. More Pain and Fatigue, so now I am in the process of cutting it out again and hope to feel better soon. One thing I noticed before and now is that I feel worse when I first start cutting them out and then after a week or so I begin to feel better so if you try it, it may not work right away.
Hi, Anyone here trying diet changes for fibro? 
