Anyone Ever Diagnosed With Fibromyalgia?

[georgie]

Barbra, Synthroid has a reputation for keeping Thyroid people still sick. If you can make the switch to Armour and find a Dr that knows how to dose it ( keep increasing meds slowly until symptoms go away and a PM temp is 98.6).....you may be able to join the 1000s that have regained their health thanks to their own detective work. $ynthroid they call it on the thyroid lists. Horrible pathetic drug used all the time now and it doesn't make you well. Just gets your blood tests looking normal.....

[valzues]

I have had fibromayliga since 1994, after a bodybuilding competition. I blew it off, I have had so many health issues happen since then too. Now 2 months ago I find out I have celiac disease and it ties in. However, after reading everyone's replies I can't say the Gluten Free diet has helped my FM problem. In fact I have noticed it back after all these years. The headaches and pain in my joints have increased since I have gone gluten-free. I plan on seeing a new doctor for the pain and hopefully he can shed some light on all this. I have never had such headaches or leg cramps. I think it is this diet. Oh well, it amazes me how many people have my symptoms after all these years it is nice to know. Thanks!

[Ursa Major]

I know ! I joined a Fibro yahoo group and I can't believe it ! People that so much in pain but just taking more and more pain meds and narcotics. When I tried to post about the Fibro & Thyroid connection I was moderated off ! Many on the List are on Synthroid which is proven not to work that well - but refuse to listen to alternative natural Thyroid meds and adrenal support.Couldn't even mention Celiac ! Lots have IBS, vitamin defiicencies- all the symptoms that we know sound a bit likely and warrant further testing.

I found that almost ALL people with fibro are 'diagnosed' with IBS as well. They're all complaining of stomach and bowel problems, on top of the pain and fatigue. I posted several times, trying to get them to understand that IBS is NOT a valid diagnosis, and is likely caused by food intolerances.

I had told them a few years before that, that the nightshade family could be a problem. Nobody cared about that, either. But now I read that people with arthritis (and fibro is considered a form of arthritis, too) should definitely eliminate the nightshades, as often those will aggravate that condition. Oh well.

[Fiddle-Faddle]

Ursu Major, do you have a link about arthritis and nightshades? Thanks!

[JP Patches]

Hello,

I just signed up but not much of a poster really. I've had fibromyalgia for about 20 years and have learned to just live with it...A month ago I found out a relative had celiacs and in my research thought that many symptoms sounded like my gut problems, etc. I went gluten free and within four days I started feeling better - gut wise and in ways I had not expected at all. My body stiffness, neck aches and headaches all but went away. I actually felt so much more HAPPY and good - I had forgotten what that was like!! I can't say for sure that gluten has been my whole problem because it is still way too early to tell. All I can say is since going gluten free I have had more good - even some great days in the last month than in about the past decade. I feel like I am getting my life back. In the couple times I've slipped my body gets stiff, neck hurts and I get a headache, along with many other unpleasantries. I just can't believe the difference gluten-free makes for me, and what such a tiny amount of gluten is required to cause a negative reaction. My gosh the inconvenience of going gluten-free for me is wonderful compared to going back to feeling so terrible all of the time. I only hope it continues - it seems too good to be true.

JP

[Judyin Philly]

Ursu Major, do you have a link about arthritis and nightshades? Thanks!

Ursula..can you send me the link too.

Fiddle..just sent you a PM re--nov post re d/s forum

hugs all

judy

[Lymetoo]

ME! I was dxd around 1980. It was later found that my pain was really Lyme disease. Be sure to get checked for that.

Your ordinary lab will NOT give a good test. It's just like celiac. The RIGHT lab is just as important as the right test.

I used Igenex Lab in CA.

I've now been treated and am doing great. I did have some pain left-over after treatment, and now going gluten-free has brought me even more relief. I'm almost at 100%.

[Fiddle-Faddle]

Thank you so much, everybody!

[Nancym]

I have akylosing spondylitis which exhibits as FM, as is typical for women. Anyway, my rhuemy doctor thoroughly believes the issue starts in the gut and his treatment for me is sulfasalazine (or another drug whose name I forgot) which treats the leaky gut. But he said a lot of his patients have issues with gluten. I must say that I feel vastly better. I was having pain in my ribs, and every possible joint.

[chrissy]

i have a question for those of you with lyme disease. could you be bit by a tick but not show symptoms of lyme disease until years later?

[Fiddle-Faddle]

i have a question for those of you with lyme disease. could you be bit by a tick but not show symptoms of lyme disease until years later?

YES!!! Many people who have been diagnosed with Lyme never even knew they'd been bit, and half never had the supposedly tell-tale bull's-eye rash, either.

As you probably know, there is a lot of symptomatic crossover between fibromyalgia and Lyme, too.

Please look for and pm Lymetoo, Rachel--24, dlp252, carlab, and there are probably a bunch of others that I've forgotten, but they are our resident Lyme experts.

You might want to also check out the last 100 pages or so of the "OMG--I might be onto something (when gluten-free isn't enough) " thread, as most of them are posting about their Lyme experiences there. Don't be dismayed by the length of the thread--there's a lot of chitchat AND a lot of serious information there.

Good luck!

[Gnat]

I was only dx with Fibro approximately 1 yr ago after 3 yrs looking for a dx. My new boss tried to fire me recently which lead to intermittent FMLA leave and a lot of stress (aka symptoms). I am on Cymbalta, muscle relaxers, Xanax and I hate what it has done to my personality. I had to go see a a Psychiatrist

[angelbender]

I AM! I was dx with CFS 20 years ago and finally dx with Fibromyalgia almost 7 years ago. Going gluten free this past year has not helped my Fibro one iota.......the reason being because my stomach problems have been so bad that I have not been able to keep up with my Fibro meds. Up until I had the Celiac problem this last year, I WAS getting much better on my Fibro regimen. The "meds" that I take for Fibro are Guaifenesin. In a nutshell, the theory is that people that are properly dx with Fibro have defective kidneys that are unable to thoroughly remove the phosphates in their bodies. Taking Guafenesin somehow helps the body to do that, but one must also avoid salicylates, topically being most important. This discussion of gluten being related to Fibro can be difficult because we need to remember that traditionally Fibro has been a catch-all or wastebasket diagnosis, meaning that doctors rule everything else out (thyroid, lupus, nutritional deficiencies, MS, etc) and then will throw up their arms and say "it must be Fibromyalgia," when in reality they usually know next to nothing about it. The latest research on Fibro involves an OBJECTIVE dx rather than a subjective one. Previously a doctor would just ask you where you hurt and then if you have at least 11 of the 18 areas in pain, they would give you a dx of Fibro. With the new treatment, a properly trained practitioner can actually FEEL the hard lumps in your muscles. Anyhow, to make a long story short, when the proper dose of Guafenesin is figured out, a person can actually start reversing their Fibromyalgia if they keep taking it. My lumps were going away in alot of areas and have returned since I felt too sick to my stomach to eat much or take my Guai. I already knew I was getting worse but my Fibro doc confirmed it. Thousands of people (mostly women) have been getting better with this treatment. So the question remains: Who really has Fibromyalgia?

Anyhow, if this thread of treatment for Fibro is new to you and you want to know more about it, the doctor who developed the treatment has a book out, "What Your Doctor May Not Tell You About Fibromyalgia," by R. Paul St. Amand. This doctor is not getting rich off of this book. You can find it at almost any bookstore (Borders, B&N etc) or they can order it for you. It's out in paperback but if you are skeptical and don't want to spend the money, most libraries carry it or yours can probably get it for you from a library that participates in your system, thus saving you the outlay of money. There is also an international website and posting group devoted to this. If anybody is interested in it, let me know and I'll look it up for you and post it here. And by the way, I do not stand to gain financially by promoting this regimen or the book......I am just a person who has been sick for years but have been getting better on the treatment........unbelievably so. The only thing it hasn't helped is the CFS, which I am hoping that perhaps the Celiac/gluten problem will be helping. I hope. I also hope that posting this information may help somebody out there who is still having Fibro/pain problems even after going gluten free and eliminating certain foods. If nothing else, it sure will get rid of all of your sinus problems! lol. Take care, Angel

[tavalon]

I was never diagnosed with fibromyalgia but I was way on the way to the diagnosis, along with Reynaud's (no, I don't smoke) and borderline hypothyroid. I had chronic joint pain and bought Ibuprofen in the 500 pill size from Costco (and they didn't last that long!). I felt lousy for so long I just thought that was aging (I decided this at age 29). Then, when I was 39, I got together with a man who has a child with Autism. I researched treatments for him and came across Gluten-free Casein-free diet and his bowel symptoms made him sound like a good candidate but we had the rule that one of us needed to try out anything we planned to try out on him. I volunteered for this one just because I've had so many food intolerances through my life that I've learned to have an iron will around food and so thought I would be faithful to it long enough to see what side effects he might have. Little did I know that I was going to spend a week of hell getting off of gluten and casein but that by the end of that week I was going to see my joint pain ease up almost miraculously. It wasn't gone but it was obviously going. Needless to say, I decided to stay on the diet for a while and I did some research and that's when I discovered Celiac and was pretty sure I had it. But then when I considered going back on gluten to get the diagnosis I decided I needed my health more than the diagnosis. I'm in my 5th year of being gluten free and as I mentioned before, because of my food intolerances I'm really good at the diet, obsessively so, in fact. And, when I don't have gluten accidents (and I think I've had maybe a half dozen accidents and no purposeful gluten incidents in those years) I feel healthier and happier than I did when I was 29. Sadly, I had a gluten accident the other day and I've been on the Ibuprofen since and have been dragging my tail something fierce. I will never eat something at a party again unless I see a package or a sworn statement. This was a bad accident and I don't like the reminder.

BTW, the kiddo who saved my life or at least helped me to have a higher quality of life has benefitted greatly from the Gluten-free Casein-free diet. Sure, he's not normal but he's much healthier.