• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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:
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
Ads by Google:


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
      106,112
    • Total Posts
      928,997
  • Member Statistics

    • Total Members
      63,516
    • Most Online
      3,093

    Newest Member
    Ophelia
    Joined
  • Popular Now

  • Topics

  • Posts

    • Dermatitis Herpetiformis  can manifest itself in lesions anywhere, not just elbows and knees.  I have it and although gluten free, I still have severe itching and little bumps that itch.  I don't have the lesions any more, but itching can drive a person mad.  the bumps can be on buttocks, shoulders, etc.  Dapsone is the standard treatment, if you are not allergic.  I also use topical prescription creams.  I take 2 Zyrtec a day and benedryl at night.  Benedril spray helps with temporary relief.  Also am on hydroxyzine and doxepin.  Sometimes steroids like prednisone help, but can ruin ones blood sugar counts.  I use Grandma's Baking Soda soap.  Straw may certainly be a factor.  I must be coming in contact with a trigger of some kind even though I'm very careful about my diet.  Change your dermatologist and get a specialist in DH.  I went for years with all kinds of stomach and bowel issues and was 69 years old before being correctly diagnosed.  Don't let anyone tell you it's your imagination!
    • I can not help you except to offer some emotional support.  You are not crazy!  You can get glutened on a farm.  Here is a study: http://www.nejm.org/doi/full/10.1056/NEJMc063112#t=article This topic has come up before: Hugs!      
    • I know I got glutened after handling some straw last year helping out decorating at the farmers market then going to eat something without washing my hands. I later learned it was wheat straw, some of them still had the heads on them and everything. Gave that area wide walk around after that, I did not have much issues with inhalation with it. But if your there with a thrasher running, down wind during the harvest.......I imagine it might be hell if your super sensitive. If you get skin reactions that easily from it I guess taking a vacation during harvest? Try staying indoors, dust mask, long sleeves and pants hope for the best.......I am just throwing some ideas out there. Maybe someone can help a bit more.
    • Hi i haven't been diagnosed yet. Bloodwork was negative (on gluten free diet) and I'm awaiting skin biopsy results  I have DH on the front of my thighs. The dermatologist says DH only happens on knees and elbows therefore I don't have it. It's itchy as hell, blisters, purple scans as It heals, migrates around but always in that spot on both legs. It takes 5 days after exposure to gluten for it to show up and it can last for a month. I throw up 24 hours after exposure, GI symptoms 36 hours after that last for about a week. I also will have a panic attack somewhere in that time.  I've been gluten free since December. Rash went away after a week of no gluten but came back after a few months (I ate a rice Crispie square)  My problem is this. I live in a farming community. I just filled my dogs kennel with straw not even THINKING about gluten. This was last week. All symptoms happened in order and now the DH is back. How the hell am I going to survive? I can stop using it on my property but what if it's in the air during Harvest time? I thought I had a mental handle on this but I'm devastated and terrified. My husband doubts it's possible the straw Glutened me but I know it did. What if this summer the air literally kills me? Has anyone dealt with this? I feel like I'm going insane, I'm so obsessed with this and now I'm itchy and sick too 😥 
    • It's good to be aware isn't it. Medical research has verified airborne particles can be problematic and hopefully there will be greater refinement in the research to establish greater understanding over time.  The site manager at the construction site informed me that my symptoms starting coincided with when the work with cement started. As I got sick from plaster in my house I am thinking this could be related. I was honest with my doctor about my symptoms and said I thought it had something to do with working next to a construction site. He said it sounds like an allergice response and said that it could be related to gluten symptoms but that these things are poorly understood.  The cement work nearest my window is finishing this week and I'm due to return to my job. Relief! X 
  • Upcoming Events