Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Fibromyalgia
0

6 posts in this topic

I've just recently been diagnosed with this ...does anyone know any effective treatment methods?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Pharmaceutically, I used a combination of mirapex (as a sleep study determined I had restless leg which impacted my sleep which had a HUGE impact on my fibro symptoms) and cymbalta (as a meeting with a pain-specialist psychologist determined I had cocommitant mild-moderate depression). Both those did help.

But it is VITAL to keep up with the non-pharmaceutical things just as religiously as the pharmaceutical ones (if you go that route).

1) Learn to say no. This means that you might be tempted to do a lot in your day, but don't. It'll come back and bite you. Find out - HONESTLY - what your capacity is, and honor and respect it. It may mean that you're not going out with friends most nights of the weeks, but you'll have enough energy and little enough pain that you can do so on the weekend. It may mean that you don't get the house as scrubbed clean as you did before, but it gives you enough energy to make it through what you can without extra pain.

2) Get regular (daily, if possible) exercise of some variety. We all know I'm biased since I teach it, but yoga can be a GREAT option here. Swimming is also excellent. And walking is fabulous. If it's only 10 minutes a day, do it. If you can do it 20-30 minutes twice a day, GREAT, but don't beat yourself up if you need to do less. Do what you can, but DO some. Exercise is important to keep the joints well lubricated and the muscles from stiffening. Obviously, this is kind of important when dealing with fibromyalgia! :)

3) If you haven't, "clean up" your diet. Obviously, minimizing any processed foods is an important start. But you may find you need to reduce sugar, or determine if you have other food intolerances that are playing a role. This is a long process, cleaning up the diet so it's optimal for you, and there is no universal answer that'll fit most people. So be patient with it.

4) Investigate what supplements you want to take and will work for you. There are a number that are thought to help with fibromyalgia, and I would start by looking into:

* malic acid (I get it in the form of magnesium malate; it's what I could find) which is thought to be effective at doses between 1600mg and 2400mg per day

* CoQ10, though you may need to find the right dose for you and it's not effective for everyone

* a B-complex supplement, but I wouldn't overdo the dosages too high either

* vitamin D

* omega-3 supplement, and probably a larger dose than you'd otherwise take - I take 6grams per day for anti-inflammatory purposes

* some people have suggested 5-HTP for fibromyalgia; I didn't try it since I opted to try the cymbalta (the two are contraindicated together), but it's another one to look into

5) Consider acupuncture. Recent studies suggest that it may be effective (for some, not all) in treating fibromyalgia - certainly better than a placebo in it's efficacy rates. It helps me. :)

6) Sleep. Do not say "oh, I'll catch up on sleep later". Do not say "oh, I'll just stay up another hour". Stay committed to dedicating time to sleeping, just like you dedicate time to other activities in your life. If you find you NEED a nap, give yourself permission to take one and find a way to make it happen. Maybe not a five hour nap that will mess with your regular sleep schedule, but an hour. Yes, it might be inconvenient (especially with kids), but you can usually find a way to make it happen, at least some of the time.

7) Reduce stress. Everyone reads this advice, and most people, for the most part, blow it off. "Oh, well, today was stressful, but I'll get some sleep." or "I can't eliminate any more of the stress from my life; this much is normal." I call BS on that. There are two ways to reduce stress - change your attitude to the situation and change the situation. Some situations will make us stressed for various reasons, but we can change our approach and learn to not be so stressed by them. Counseling can help with this, as can a number of other techniques. (My years working with a psychologist and my years of yoga philosophy studies have been a HUGE help in this department for me.) Changing the situation is always within your power, but may take more effort than you think you want to do. (My job was my primary source of stress; I got laid off - and losing half your family income is certain another stressor - but even without the pharmaceuticals, I have had far fewer fibro flares than I used to.) What I really learned is that stress is not stress; there are some kinds of stress that any individual can cope well with, and there are other kinds that the same person won't cope so well with. Do your best to change the situations you can't cope with, and improve your coping in all the situations. I cannot stress enough how important it is to REALLY, ACTIVELY change your life/mind in ways to reduce stress. (Some of the more lasting theories of fibromyalgia lean towards it being caused by an overactive sympathetic nervous system (the fight or flight stress response) and a burnt-out/overworked parasympathetic nervous system (the relaxation response). What type of stress brings this on (emotional, chemical, physical, etc.) is different for everyone of course, but it's looking like it plays a role. That's why stress management is so vital.)

Clearly, work with your doctor (usually a rheumatologist) and make sure to get any supplementary/followup testing (nutrient levels, sleep study, etc.) to see if something is contributing to the problem.

This is what I found worked fairly well for me. I'd say that it was an even bigger lifestyle change than going gluten free - because it was about far far more than eating. But it's worked fairly well (my symptoms are certainly manageable!) and it's improved my quality of life significantly.

0

Share this post


Link to post
Share on other sites

I was treated using Dr Teilebaums methods. I found an excellent doctor who saved me from feeling like I was less of a person because I had fibromyalgia. It's real and not in your head.

0

Share this post


Link to post
Share on other sites

I have not been diagnosed with Fybro yet but am pretty sure I have it. I have the burning eyes, aching muscles/joints,and other gastro issues. I also have had tremendous weight loss. As long as I avoid wheat/gluten, take supplements, and get rest will the symptoms subside? I go the rheumatologist March 17th. I have been trying to eliminate the foods I tend to be allergic to and have a positive attitude. I also take a good powdered multi-v with b-complex. ANy other recommendations?

0

Share this post


Link to post
Share on other sites

Hi Eeyore,

I have been dx'd with fibro, but unfortuneatly, I guess I am an unusual case because none of the meds have helped me at all. They only made everything worse. Doing research on fibro I found that almost 75% of patients with fibro have food intolerances, doing more research is what led me to this site, plus with my rhuematoid arthritis, not only am I gluten free but I can't have the nightshade vegetables which also aggravate and cause my arthritis to flare causing pain and swelling. Dairy also causes tummy problems as well as headaches, and then soy which also causes me pain, anxiety and depression.

I wish I had known all of this as a kid, It would have made life a lot easier.

I take at the moment 10 mgs of Melatonin and 200 mgs of 5-HTP for sleep at bedtime, I take during the day a good B-12 sublingual, 10000 a dose, Vit D, 5000 Iu's a day. I take 2000 mgs of L-Glutamine a day to repair my intestines and it also helps if you get glutened and papaya enzymes to help with digestion. My pain levels have gone from a daily 7-8 to 2-3. My fatigue levels are still the pits but I have started to notice a little improvement finally after almost a year. I don't know if this will help you any but it helpd me.

I wish you good luck.

Vicky

0

Share this post


Link to post
Share on other sites




if you're Celiac with fibro, then following the gluten free diet will get rid of some of the fibro symptoms as well. I was diagnosed with fibro first, (in 1993) and no drugs ever worked long term. So I'd have 6 week scripts and then go off them, then try something else.

Then when I started the Atkins diet (which is naturally gluten free for the early phases) I noticed my fibro getting much better. Then it all went to crap again when I did the gluten challenge!

Eliminate refined sugars. All of 'em. They're inflammatory and poison and have no nutritional value. There are other options for sweetening your foods that won't poison you. Stevia, honey, agave, etc. I use stevia pretty much exclusively.

Eat fresh, whole, natural foods, not packaged manufactured foods. As close as to how Mother Nature intended them is best. Stick to the outside aisles when you're shopping, not the inside aisles. The only things you'll need on the inside aisles is the gluten free flours for baking. Bake from scratch, rather than packaged mixes. I use almond flour and coconut flour (I'm a low carber, so I don't use rice flour or potato flour at all) for baking. Cakes, cookies, lots of yummy stuff!

Fish oil omega 3s are anti-inflammatory. There are some cooking oils that are highly INflammatory, so don't use those. Omega 9s are inflammatory, avoid regular safflower and sunflower oils, corn oil, cottonseed oil, and mixed vegetable oils.

And avoid ALL trans-fats! Anything that says hydrogenated or partially hydrogenated vegetable oil on it is a trans-fat, regardless of what the front of the label may tout! The FDA allows them to label foods as zero trans-fats if it is less than .5 per suggested serving. And the suggested serving us usually less than anyone is going to eat in one sitting, so you're really getting lots of trans-fats. ANY amount is too much!

Make sure you get pleny of dietary healthy fats in your day. There are fat soluble vitimins that if you eat a low fat diet, you're not getting those vitimins, and they're very important! A, D, E and K are fat soluble. The Bs and C are water soluble, so you need plenty of water too.

Don't pay attention to the health department food pyramid. It's backwards. And isn't scientifically or anthropologically sound.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,698
    • Total Posts
      921,787
  • Topics

  • Posts

    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,704
    • Most Online
      3,093

    Newest Member
    Fbmb
    Joined