Fibromyalgia

[JBaby]

I am curious how many of you have Fibromyalgia? I am in a flare up from gluten CC, and the aches/pain are in the upper midd and lower back and the left knee. I know these are a few of the tender points. Is there anything I can do to east the pain. Nauseaus too. Exhausted too. I felt fine till right after I ate. Abdominal cramping, then the headache and overwhelming fatigue.

[eeyore]

I have fibromyalgia -I was diagnosed after I went gluten free, but it still flares up in response to sugars, nightshades, and pretty much any form of complex carb. I've never really had abdominal/intestinal issues, but I've had the aches for about half my life and confused most of the doctors I've had until I the one I saw this February.

[RiceGuy]

I also found nightshades to really bring on joint and muscle pains, which would last for weeks.

As for easing the symptoms, from my experience, magnesium and vitamin B12 have cured it. I no longer experience any of the debilitating pains I had. Completely gone! So in my case it was due to nutrient deficiencies, which I presume allowed the toxic alkaloids in nightshades to have such pronounced effects. I still take the supplements, and have not tried eating nightshades.

[dilettantesteph]

I had fibromyalgia pre gluten free and get it back when glutened.

[crescentkelly]

I was diagnosed with Fibromyalgia in 2006. I needed to loose weight for a bridesmaid's dress recently and I went on a liquid diet. Turns out the shakes I was drinking were gluten-free. I started feeling amazing, I had more energy, I wasn't getting the IBS symptoms associated with FMS, and I was loosing weight. (I had lost 60 lbs. before and I now remember the liquid I was drinking then was gluten-free) After the wedding I started eating normal food again and I was puking, intense pain was back, and I was exhausted. I stumbled across and article about people often being diagnosed with FMS when they really have or also have a gluten-intolerance or Celiac. I spoke with my doctor and I had to return to a gluten diet for 5 weeks. It was horrible but I recently took the test and am back to being gluten free. The test came back negative but while I went back to gluten a rash broke out over my body so I had a biopsy of the rash done this past Monday. It looks like the blood test was wrong.

Anyway, the point I was getting to was that FMS and Gluten-Intolerances seem to mask or complicate the other. I still believe I have FMS because the tender points don't go away. Maybe after a few months of strict gluten-free I'll find I don't have FMS after all but I can definitely say that my FMS symptoms are crazy worse with gluten. Also, after two weeks gluten-free my clothes are looser again.

[GFreeMO]

I had fibromyalgia pre gluten free and get it back when glutened.

Me too!

[Ahorsesoul]

I have fibromyalgia too.

[mushroom]

I have connective tissue and muscle pain - don't know whether it's fibromyalgia or some other unknown disorder

[Judy3]

I was diagnosed with Fibromyalgia in 2005 and could hardly walk. I stopped using Aspartame (Equal sweetener) and the symptoms went away almost entirely in 2008. I also started getting sicker with the stomach issues over the last 2 years and it seemed to be coming back.. I've been gluten free for only 10 days now and the aches and pains are gone. I read somewhere (don't recall where) that Fibromyalgia can be a symptom of gluten intolerance.

My 2 cents!!

*Judy

[j177]

I was officially diagnosed about 11 months ago and I have followed the gluten-free diet since that time. I have known that I have food issues for 30 years. It was 30 years ago that I developed debilitating wrist pain, symmetrical, like with rheumatoid arthritis. An acupuncture Dr. told me he thought I had food allergies. I did the elimination diet and determined that I had an issue with wheat. The wrist pain (and a bunch of other less debilitating pain) went away dramatically--the improvement was just unbelievable and I could do things again. My hands had become useless, and they completely recovered in probably a few weeks. Other pain in various locations became dramatically better as well. Several months later, I reintroduced wheat, and did not have a return of symptoms. The muscle aches, arthritis like symptoms, have not been much of an issue for me over the last 30 years. But, I developed nasal polyps and asthma. I finally decided to get a blood test because of nagging digestive complaints, the breathing, and knowing that I have a history of some issues with wheat. Blood test was clearly positive, and follow-up biopsy was positive. I have been on a gluten free diet for 11 months. My previous wheat free diet was probably not completely gluten free. I feel much better although I continue to take asthma and sinus medication. In answer to your question, I probably would have been considered to have fibromyalgia 30 years ago, but i don't think there was much talk about fibro then.

[txplowgirl]

I was finally dx'd with fibro 2 years ago, at the age of 44, after having fibro symptoms since I was 8 years old. Went gluten free about 4 months after that. My pain and fatigue eased some but it was when i eliminated the nightshade veggies and soy that it greatly reduced but i'm sorry to say that it han't gone completely away. but i have gone from a pain and fatigue level of about 9 down to 3 1/2 to 4.

[quiltedthreadhead]

I have had fibro for over 20 years and celiac was confirmed almost 3 years ago. The pain is better but my body has been in so much pain for so many years that it is really not flexible or strong any more. I am trying to rehabilitate myself and I keep over-doing it....I tried a low key yoga class last week and was in bed for the last 4 days. Anyone else working with issues like this? I use to teach ballet so I want to dance again!

[love2travel]

I have had fibro for over 20 years and celiac was confirmed almost 3 years ago. The pain is better but my body has been in so much pain for so many years that it is really not flexible or strong any more. I am trying to rehabilitate myself and I keep over-doing it....I tried a low key yoga class last week and was in bed for the last 4 days. Anyone else working with issues like this? I use to teach ballet so I want to dance again!

My fibro can be so debilitating. I have eliminated soy and aspartame but have not noticed any difference, nor have I noticed any difference eliminating gluten. Even eliminating nightshades for a month did not do a single thing (perhaps I must try for longer). I also have tons of trigger and tender points, myofascial pain, costochondritis, herniated discs and FMS really exacerbates this pain. It is constant and it is nearly impossible to get comfortable to sleep at night. It feels as though someone has taken a baseball bat and beaten me repeatedly. All the time. Believe me, I understand about being in bed for several days at a time. It is a horrible, horrible illness.

We are preparing for a long-haul flight tomorrow and I am T E R R I F I E D because the pain last time was so intense and unbearable. Yet I have a hard time having my pain control me and what I do/do not do.

As a former ballet dancer it must be supremely difficult for you as you are used to being flexible. I feel for you and really hope you find something that helps. Supplements help some - I take mega doses of magnesium glycinate, Vitamin D3, B12, Zinc, etc. but have not noticed that helps, either. I need to continue taking them, of course, but am still looking for the answer. I recently tried Cymbalta which was a huge mistake. At first it was ok - I felt very ill from side effects but then when my dose was increased immediately had severe arrythmia and high BP so I had to wean off. That is very rare. It does help some people tremendously, though, and is one of the very few drugs approved specifically for FMS. Sometimes you get desperate enough to try anything, including prescription drugs!

[Reba32]

I was dx'd with fibro in 1993, after suffering without a diagnosis since 1988. I wish I had something positive to say about it, but for me at least, it's only got worse with age. I used to have periods of tolerable activity, when I could go out and do stuff with minimal (not ever none!) painful affect, but lately, it's been difficult to even stand up and wash my dishes, or cook myself something to eat. Which of course causes a vicious cycle of inactivity, which makes any activity more painful, etc etc etc ad nauseum.

The only thing I can suggest is don't be afraid to take whichever pain killers work for you, and if you have problems sleeping, talk to your doctor about a low dose sleep aid, or anti-depressant. There are several on the market that are known to specifically help people with fibro sleep. And try to be as active as possible, without causing too much pain. Even just a walk around the block every day can help.

[tarnalberry]

I have had fibro for over 20 years and celiac was confirmed almost 3 years ago. The pain is better but my body has been in so much pain for so many years that it is really not flexible or strong any more. I am trying to rehabilitate myself and I keep over-doing it....I tried a low key yoga class last week and was in bed for the last 4 days. Anyone else working with issues like this? I use to teach ballet so I want to dance again!

Yoga can be great for fibro (and this has been well documented in research, as well), but you need to find a teacher/class that is a good match for you. "Low key" doesn't necessarily get at whether or not it's going to be beneficial for you. Was the teacher helping you with modifications and props to make it easy? Were the instructions simple to follow so it wasn't mentally stressful? Were there a number of resting poses that were really resting *for you*? And do you feel that YOU were able to balance the amount of effort you put in, regardless of what the teacher asked for?

I teach yoga, and it takes time to learn to teach to those with chronic conditions, read how they are doing by watching their bodies, make modifications and adjustments, and communicate to them how to regulate their own input. I also have fibromyalgia, so I know that it can be hard on the end of the student as well.

If you haven't tried a yoga therapist, you might start there. Also, a meditation class, pranayama class, or yoga nidra class are other good options for places to start.

[eatmeat4good]

I was diagnosed with Fibromyalgia...and was told I wouldn't get any better. Just to learn to live with it. Many long years until I found this place. 6 months into being gluten free and I no longer had any symptoms of Fibromyalgia...at all...But give me some trace gluten or CC and Wham...I'm back on the couch and unable to move without pain, painful muscles and joints and migraines. I have no tricks to make it easier to endure the attacks, just time and water and rest. Without gluten...everything works fine now...muscles returned to normal functioning finally. I am constantly amazed by that.

[josh052980]

I've noticed that fibro symptoms seem to be popping up for me now that I'm gluten free. Take this weekend for example. I live in Michigan, so the weather is basically bi-polar. We went from cold and snowing, to 60 degrees and sunny, so 45 degrees and it sounding like a hurricane blowing outside for an entire day, all within a 3 day span. My body is aching like crazy, and I just feel drained. I was coming off of being glutened, as had just started feeling better again. All my gluten symptoms are gone, but the achy body and drained feeling is persisting. It never used to be that way for me til I went gluten free.

I guess in a way, going gluten free screwed me in that sense, but I feel so much better overall, I'll take a few ran down and blah days, over a glutening ANY DAY.

[BethM55]

I, too, have fibro, and had great hopes for a complete 'cure' when I went gluten free several years ago. Eliminating gluten helped bring the fibro to more manageable levels, but it's not gone. I wish it was. So much I wish it was!!

I have thought about eliminating other foods, but haven't gotten the courage, or maybe haven't been desperate enough yet. I live with constant pain, as do many of you, so I can't remember what it's like to be pain free.

Weather changes, barometric pressure changes, changes in my routine, lack of sleep, extra stress, all of that can trigger the fibro, and often does.

Someone posted about nightshades and hand/wrist pain. I might try eliminating the nightshades, if it will bring back function to my hands and decrease the pain in them, which is beginning to affect my daily life and work. I've been eating a lot of tomatoes lately. Hmmmm.....

I am self diagnosed gluten intolerant, and lately have been questioning that, since the fibro is still with me. It's good to know gluten free didn't cure others, either. (Not good that it didn't cure, just that I'm not alone in this! )

I'm not about to start eating gluten again. It DOES make a difference. If I get glutened, the joint and muscle pain returns in a quite evil manner, accompanied by fatigue and some GI additions.

Thank you all for being here and listening and sharing. All that really helps. A lot.