Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Muscle Weakness And Fibro Symptoms

Guest SusieQ

By Guest SusieQ
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest SusieQ
Guest SusieQ
Posted

I've been following the gluten free diet for about three and 1/2 months now.

I feel less fibromyalgia pain. The D has stopped. No more gas. Appetite has normalized. I'm finally able to lose weight and I'm excited about that.

My present concern though is neurological. I was given a dx of fibromyalgia 10 years ago. Characterized by fatigue, pain in tender points, and stiffness.

The pain is receding. I have a lot less pain. The fatigue is less, although I never really feel rested....ever.

I'd complained to docs about feeling weakness in my legs, a lack of strength. They had dismissed that as being part of the fibromyalgia and from my weighing too much.

From the research I've done, it sounds like the weakness and lack of strength could be due to the gluten intolerance. That it can actually cause neuromuscular problems. What my question is, has anyone here had similar symptoms, and if so, have these symptoms reversed for you? How long does it take for them to reverse? How much might these symptoms improve?

Also, when I sit for any length of time and then try to get up, I have terrible stiffness and difficulty walking.

Might this resolve over time or am I stuck with it. I can't walk for any length of time which is really making it difficult to get around. Ligaments in the back of my leg also feel like they are trying to freeze up.

Would love to hear from anyone that is dealing with these symptoms or has had them.

Really would appreciate any comments or thoughts on this.

Thanks,

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

well, I've been gluten-free for three years now, and unfortunately my fibro symptoms haven't completely gone away... They are significantly better than before my dx, but still very sore in the tender spots and widespread muscle fatigue and pain... I take Tramadol daily so that I can cope with the pain. I think I may have other food intolerances like dairy and soy, I've cut out the soy in my diet but I'm not willing to give up dairy (yet)... I may get desparate enough and try to go without dairy, but for now, not willing to do that! One thing that really helps is my tens unit... I got it from my chiropractor, and I can put the electrodes on the areas that are the most tender and it does give me some relief. I think it interrupts the pain signal from the brain at least temporarily.

Ursa Major Collaborator
Ursa Major
Posted

Susie (love that name, it's my youngest daughter's), have you been tested for ferretin (iron) levels and levels of vitamin D, K, potassium, magnesium and calcium? A deficiency in any of those (more likely a combination) could be causing your weakness. It happened to me when I was anemic, my legs were so weak that many days I couldn't stand up, and had to stay in bed! Have your levels tested, its important.

I've started massage therapy, with a massage therapist who knows how to release those tender points, now that the cause of the fibromyalgia (food intolerances) is gone. My pain is so much less that I don't need pain killers any more (or rarely, anyway). But I wasn't really able to touch certain spots on my legs, shoulders or lower back especially, as they were too sore.

So, last Thursday I went to have my first massage ever. She said that she had rarely seen such knots in muscles, and tense muscles, but that she will be able to get rid of these problems, it just takes a couple of visits (maybe three). She was very gentle (still, it really hurt), but what she did already helped (and we started out with only half an hour). She also gave me some stretching exercises to do, because the muscles in my calves need to be stretched.

I am very hopeful that with the massage, chiropractic, diet and exercise I will improve a lot (maybe even get totally better? But that is probably too much to hope for :mellow: ).

ravenwoodglass Mentor
ravenwoodglass
Posted
I've been following the gluten free diet for about three and 1/2 months now.

I feel less fibromyalgia pain. The D has stopped. No more gas. Appetite has normalized. I'm finally able to lose weight and I'm excited about that.

My present concern though is neurological. I was given a dx of fibromyalgia 10 years ago. Characterized by fatigue, pain in tender points, and stiffness.

The pain is receding. I have a lot less pain. The fatigue is less, although I never really feel rested....ever.

I'd complained to docs about feeling weakness in my legs, a lack of strength. They had dismissed that as being part of the fibromyalgia and from my weighing too much.

From the research I've done, it sounds like the weakness and lack of strength could be due to the gluten intolerance. That it can actually cause neuromuscular problems. What my question is, has anyone here had similar symptoms, and if so, have these symptoms reversed for you? How long does it take for them to reverse? How much might these symptoms improve?

Also, when I sit for any length of time and then try to get up, I have terrible stiffness and difficulty walking.

Might this resolve over time or am I stuck with it. I can't walk for any length of time which is really making it difficult to get around. Ligaments in the back of my leg also feel like they are trying to freeze up.

Would love to hear from anyone that is dealing with these symptoms or has had them.

Really would appreciate any comments or thoughts on this.

Thanks,

I had fibro for many, many years. It took about 6 months for things to mostly resolve. It is however the first symptom that comes back when I get glutened. I also noted after many flares this year that the nightshade family would cause similar discomfort but without the brain fog and severe D that I get with gluten. Sublingual B 12 seems to help a bit.

barbara3675 Rookie
barbara3675
Posted

Really do have to reinforce that fibro and the gluten issue do go hand-in-hand. I think that is what tipped it for my DDIL when she suggested that I get tested to see if possibly I should start eating gluten-free. I am nearly 61, have to work pretty much full time, sometimes more and I take lots of medicine. I take Topomax and Verapamil to ward off migraines and Mobic for the fibro. I sure can tell if I miss the Mobic---it is an anti-inflammitory, but not of the classification like the ones that are being taken off the market. In addition I take a lot of magnesium with malic acid which helps a lot with the fibro. The fellow that runs my health food store has celiac disease but is also brilliantly learned. He suggested the magnesium for the fibro. I take a good one and it is expensive. Good thing I can work so I can pay for all this medicine!!!!!!!! Wonder if I could take it easy, if maybe I wouldn't have to take so much????? There are times when I hurt more than others, but I also think it is important to keep moving with fibro, although there is a fine line there...you can overdo it too. People that don't have fibro, just don't get it. It is like having the achy flu sympton, just sometimes worse than others. I think we get used to it. Barbara

jenvan Collaborator
jenvan
Posted

Susie--

Wish I had an easy answer for you!! My FM developed about 2-3 years ago... Started with extreme neck/shoulder/back pain...almost like I had had some sort of injury. Over the following months the pain seemed to dissipate from my neck and shoulders and end up being all over pain. I definitely have the points...I hurt all over, knots and fascial adhesions..but when I hit or poke one of those points--Ouch!! Anywho...I have been gluten-free for 14 mos or so..and unfortunately my FM has not really improved. I thank God I don't have it as severely as I could...but it can be very discouraging. I am still exploring other causes for it...something in conjunction with the celiac disease that might be causing it. I did physical therapy, muscle stripping (OUCH OUCH!) and acupuncture...all to no avail. I am trying to take mag/malic acid again...as that is one of the better "treatments" around for FM. I think another good one is stretching. I also feel like my muscles are always tight--almost a "shrinking" feeling... I am just starting to get into Pilates--lots of stretching and lengthening of muscles. I hope that will be a good help for me too. Other than that, I use my heating pads and epsom salt baths a lot :) Be hopeful--I'd say since you are already noticing improvement--you may be pain free someday! Just be sure to be vigilantly gluten-free. You may be like some here--getting gluten will bring back the pain and symptoms for a period of time, like it you have gluten on accident...

ebrbetty Rising Star
ebrbetty
Posted

my FM and CFS seem to be worse :blink:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
my FM and CFS seem to be worse :blink:

Betty, check out my links on lectins and salicylates (in my signature), that's what's causing most of my fibro symptoms (gluten is a lectin, but not the only one by far).

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.