Fibromyalgia Anyone?

[angieInCA]

Hi all,

Over the last few years I've been having some deep muscle pain and tingling in my hands and feet. Around August of last year I started developing insomnia, debilitating exhaustion, agonizing nerve pain all over but especially in my hands and feet, an inability to regulate body temp and extreme myalgia pain all over my body to the point of having to use a cane to walk. I have also experienced brain fog, memory loss and sensory sensitivity to light, smells, noise and touch..... you name it, it creates pain for me.

 

In May, after seeing 6 different doctors, I was diagnosed with Fibromyalgia. I now have to take 4 different medications daily to try to get the nerve misfiring under control and to help me get some sleep. I also take pain meds every 6 hours and I have a stronger pain med for really bad days. In the last 2 months I have had to go to the hospital 3 times for morphine shots when the pain has become unbearable. I had to quit my job because I could no longer perform.

 

My question is, do any of you have Fibromyalgia or CFS? Were you diagnosed before or after celiac disease or gluten sensitivity? All of my Dr.'s were surprised to learn I have Celiac disease and don't seem to think there is a connection. I was wondering what your experience might be if you have both and if you have any pearls of wisdom.

Thanks

Angie

[pricklypear1971]

Well, both are autoimmune diseases...if they don't see that connection I think you need new doctors.

The most interesting thing I've seen about fibro lately is this article: Open Original Shared Link

I hope you find relief, soon.

[nvsmom]

I thought fibromyalgia was linked to celiac disease... I know it's linked to thyroiditis which can cause brain fog and a lower body temperature. That might be something to check for yourself too.

[Kathyl067]

I too have a lot of the same symptoms as you . I have so many questions I have been writing down for when I go for my second opinion . I just have not been pleased with the answers my current GI has been giving me . She kinda has an ( this is how it is just deal with it ) attitude . My husband even says how he sees where I seem like I'm in a daze a lot and very forgetful . I have missed some work recently and I have had a great work record for many years. Because of the muscle and joint pain. The light hurts my eyes, and I have a lot of headaches . I so hope to get some answers as I hope the same for you. Hang in there !

[Gemini]

Hi all,

Over the last few years I've been having some deep muscle pain and tingling in my hands and feet. Around August of last year I started developing insomnia, debilitating exhaustion, agonizing nerve pain all over but especially in my hands and feet, an inability to regulate body temp and extreme myalgia pain all over my body to the point of having to use a cane to walk. I have also experienced brain fog, memory loss and sensory sensitivity to light, smells, noise and touch..... you name it, it creates pain for me.

 

In May, after seeing 6 different doctors, I was diagnosed with Fibromyalgia. I now have to take 4 different medications daily to try to get the nerve misfiring under control and to help me get some sleep. I also take pain meds every 6 hours and I have a stronger pain med for really bad days. In the last 2 months I have had to go to the hospital 3 times for morphine shots when the pain has become unbearable. I had to quit my job because I could no longer perform.

 

My question is, do any of you have Fibromyalgia or CFS? Were you diagnosed before or after celiac disease or gluten sensitivity? All of my Dr.'s were surprised to learn I have Celiac disease and don't seem to think there is a connection. I was wondering what your experience might be if you have both and if you have any pearls of wisdom.

Thanks

Angie

Angie...........here's the connection between Celiac and Fibro.........Fibro is not a diagnosis. It's like IBS. The underlying cause is Celiac and all the inflammation it causes in your body. It affects your muscles and nerves. Once you have been gluten free for awhile, it should calm down and improve. Doctors only know how to symptom treat these issues and it can make matters worse. I have friends who became debilitated like you are and after following the diet for awhile, they had almost complete resolution of symptoms.

How long have you been gluten free? It can sometimes take a few years for improvement to happen but make sure your diet is clean so healing can happen. Be patient but hang in there.........healing can happen. Do you have any other food intolerances? Sometimes that can make for additional inflammation.

I hope you begin to feel better soon!

[angieInCA]

Thanks for the responses.

Gemini, I have been gluten free with a clean diet and a gluten free kitchen (the whole family went gluten free in the house when I was diagnosed) since 2008, so it has been 5 years. I am very careful and I rarely get accidently glutened, but it does happen sometimes. That is one of the reasons the Doctors are surprised I was having increasing problems because they recommend going gluten free and I already am there. 

 

Actually Fibromyalgia is not considered an autoimmune disorder. The new research dictates that it is considered a neurological disorder where the regulatory cells in the palms of your hands malfunction causing the brain to start misfiring information to the nerves. here is a link to an article explaining it better.     Open Original Shared Link

 

The type of doctor you have to see with Fibro is a Rheumatologist because that is where it was first diagnosed when they found arthritis was not the culprit. It is no longer considered a throw away diagnosis that they give when they don't know what is wrong. My Rheumatologist has actually been great and when he diagnosed me he said "I am so sorry to tell you that you have Fibromyalgia because there is no cure but we can halt the progression and provide some relief with the right combination of treatment." I forgot to mention in my last post that along with the medication, I have been in physical therapy since September. I go 2 times a week and it has been a God send for relief. I get a 30 min. massage and 90 min. monitored exercise working on areas most affected.

 

The more research I do I believe it has more to do with hormomes and I believe I need to work with a Endocrinologist. I have thought for years that my thyroid is not functioning properly even though all of my tests keep coming back normal.  After reading the article that PricklyPear1971 posted above I believe I need to find a Neuroendocrinologist. Thank you for posting that article Pricklypear1971.

[pricklypear1971]

You're quite welcome. I'd never heard Fibro referred to as anything other as ai...learn something every day.

I understand your desire to see a neuro endocrinologist, but if you don't have success, a good ND would probably prescribe thyroid treatment. You may not get anything else out of the relationship, but you would probably get willingness to try.

[Gemini]

I have never considered Fibro to be an autoimmune disease.  I still think it is not a disease state unto itself but the result of ongoing inflammation in the body.  There is an underlying problem that is causing it and doctors tend to symptom treat because they do not understand the inflammation process well.  Yes, you read that correctly.....they really don't.  I have seen friends with symptoms so bad they had to quit their jobs and then when they went gluten free and stopped eating foods that were also causing them grief, they started healing and are different people now.  As in fully recovered and doing well.  I don't mean to argue with you and really hope you start to turn the corner and be well.  But I have 4 autoimmune diseases in total and the only reason I am doing so well is I stay away from doctors because they made way too many mistakes with me for me to trust their judgement.  I do not go to a Rheumy because I have done a better job myself but that is just my experience. I have a decent PCP and she is the only one I trust, at the moment.

 

I would take a further look at your thyroid...I think that is a good idea.  I have Hashi's thyroid disease and that can cause joint pain, if left untreated or undertreated.  I wish you luck

and really hope things are better for you in future!

[Katie Hilley]

I've been gluten free for 5 years as well and have almost every single one of the symptoms you mentioned. The hand and feet pain/tingling has also prevented me from doing my job. I'm reading more about the post on MCA (Mast Cell Activation) syndrome and I have all of those as well, a lot are similar to fibromyalgia. I'm going to see my rheumatologist and see if she will run the tests. Hope you find some answers and relief!

[LKM3S]

Hi all,

Over the last few years I've been having some deep muscle pain and tingling in my hands and feet. Around August of last year I started developing insomnia, debilitating exhaustion, agonizing nerve pain all over but especially in my hands and feet, an inability to regulate body temp and extreme myalgia pain all over my body to the point of having to use a cane to walk. I have also experienced brain fog, memory loss and sensory sensitivity to light, smells, noise and touch..... you name it, it creates pain for me.

 

In May, after seeing 6 different doctors, I was diagnosed with Fibromyalgia. I now have to take 4 different medications daily to try to get the nerve misfiring under control and to help me get some sleep. I also take pain meds every 6 hours and I have a stronger pain med for really bad days. In the last 2 months I have had to go to the hospital 3 times for morphine shots when the pain has become unbearable. I had to quit my job because I could no longer perform.

 

My question is, do any of you have Fibromyalgia or CFS? Were you diagnosed before or after celiac disease or gluten sensitivity? All of my Dr.'s were surprised to learn I have Celiac disease and don't seem to think there is a connection. I was wondering what your experience might be if you have both and if you have any pearls of wisdom.

Thanks

Angie

Hi Angie , Have you been checked for B-12 levels?  This all sounds very much like the effects of low B-12 levels.  There would certainly be a connection between celiac possibly causing a malabsorption of B-12, which in turn would cause all of the symptoms you describe, which are by the way, very serious.  You would need to have shots of B-12 and possibly a sublingual vitamin would work but you have to be monitored by a physician to check absorption of it as it doesnt work for everyone.  Many Dr's overlook B-12.  

 

Laura

[GFinDC]

Vitamin D might help.  Seems like vitamin D is low in a lot of people who have celiac too.  Coincidence?  I think maybe, or maybe not?  Head scratcher for sure.

 

Open Original Shared Link

...

In the new study, researchers studied whether raising patients' vitamin D levels to the recommended range would help with some of their symptoms. Thirty patients with fibromyalgia who also had low levels of vitamin D in their blood (below 32 nanograms per milliliter) were randomly assigned to take either oral Open Original Shared Link supplements, or a placebo, for 20 weeks.

Weeks after the treatment ended, patients who took the supplements were still experiencing reduced pain, while people who had taken placebo didn't see a change in their pain level, according to the study, published today (Jan. 17) in the journal Pain.

...

 

I just ordered some vitamin D cream.  Have no idea if it is better than taking pills or whatnot, but thot it was worth a try.

[pricklypear1971]

Vitamin deficiencies would be consistent across both celiac and Hashis/hypothyroidism. You need proper amounts of iron, d, b's, selenium, chromium to utilize thyroid meds and/or convert thyroid hormones.

[somanyquestions]

Hello all. I have read most of your posts and like a lot of you have pretty much had to make my own diagnoses and had to do my own research. Drs seem to not know how to put it all together for me. I had my first serious illness from gluten at age 10. Eggs also seem to disagree with me as well as dairy. I have every single fibromyalgia symptom named, and arthritic symptoms going back to my early 20s. I am in constant pain, widespread, shooting pains in my head. I've made radical changes in diet already, because I had bowel cancer in 2013, but have eliminated gluten only recently. Oh yeah and vitamin d is low so supplements. Also had to take B12 and iron a long time because they couldn't figure out why I'm anemic

[somanyquestions]

I forgot to add I have very bad tingling in my hands, feet and lips/ tip of tongue.

[GFinDC]

Hello all. I have read most of your posts and like a lot of you have pretty much had to make my own diagnoses and had to do my own research. Drs seem to not know how to put it all together for me. I had my first serious illness from gluten at age 10. Eggs also seem to disagree with me as well as dairy. I have every single fibromyalgia symptom named, and arthritic symptoms going back to my early 20s. I am in constant pain, widespread, shooting pains in my head. I've made radical changes in diet already, because I had bowel cancer in 2013, but have eliminated gluten only recently. Oh yeah and vitamin d is low so supplements. Also had to take B12 and iron a long time because they couldn't figure out why I'm anemic

Welcome to the forum Questions!  So have you had the celiac antibodies testing yet?  The celiac panel is the first step in getting diagnosed with celiac disease.  It's important to get eh blood drawn before going off gluten tho.

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[somanyquestions]

I will be requesting the testing for celiac this Thursday as we review yet again my labwk. Does this affect anyone's heart adversely??? I have palpitations and fast heart beat, pounding sometimes after eating or taking certain medications.

[Rosiesallergies]

Celiac diagnosis came first for me many years ago. Slowly but surely I'm adding more autoimmune diseases like Hashimotos. Fibro is also a new diagnosis not sure if its an autoimmune or not. So far Hashi's and fibro have been the hardest to manage and get back to feeling good. 

 

I've had significant fibro pain relief by avoiding the nightshades foods (tomatoes, onions, peppers, eggplants, etc). After reading an article about how those foods shouldn't be eaten by people with arthritis I removed the foods to see if it would help. Huge difference for me in reduced joint pain and swelling. I still get the tingling feeling but hoping that will disappear one day soon. 

 

For those of you that also have thyroid problems, try asking for T4. I've had my thyroid removed years ago and I still have significant problems, lost my job, etc. My doctor recently added Cytomel (T4) to my regular dose of synthroid and I've noticed a significant improvement in my overall health. 

[pricklypear1971]

Celiac diagnosis came first for me many years ago. Slowly but surely I'm adding more autoimmune diseases like Hashimotos. Fibro is also a new diagnosis not sure if its an autoimmune or not. So far Hashi's and fibro have been the hardest to manage and get back to feeling good.

I've had significant fibro pain relief by avoiding the nightshades foods (tomatoes, onions, peppers, eggplants, etc). After reading an article about how those foods shouldn't be eaten by people with arthritis I removed the foods to see if it would help. Huge difference for me in reduced joint pain and swelling. I still get the tingling feeling but hoping that will disappear one day soon.

For those of you that also have thyroid problems, try asking for T4. I've had my thyroid removed years ago and I still have significant problems, lost my job, etc. My doctor recently added Cytomel (T4) to my regular dose of synthroid and I've noticed a significant improvement in my overall health.

Cytomel is synthetic t3, Levothyroxine is synthetic t4.

And yes, some people need quite a bit if t3 if they don't convert t4.

[angieInCA]

I forgot to add I have very bad tingling in my hands, feet and lips/ tip of tongue.

Oh My Gosh, I also have tingling in my lips and tip of my tongue, also the tip of my tongue is now numb.. My tongue also swells and becomes rippled around the edges. (yes, I have been tested for many allergies). The swelling and rippeling usually happens with an anxiety attach and can last for several days. You are so far the only other person I have seen say they have the tingling mouth problem.

 

To answer other questions, yes, I have had my Vitamin D and B12 & B6 levels checked. All were low and I was diagnosed with pernicious amemia. I take B12 shots every 2 weeks and it in now in check. I also take 5000mg of D and also make sure I get 20 min of sun on my face and chest every day. 

 

I have removed dariy, soy, corn, HFCS, MSG, and several other things from my diet. I basically eat fresh fruit, vegetables and meat that I cook. I try to keep meals very simple. I also have added unfiltered apple cider vinegar (2 teaspoons a day) and raw unfiltered honey and cinnamon to my daily diet and I also drink cucumber and mint water every day.  I have seen a great improvement in some digestive issues that had developed.

 

Thanks every one for the conversation and replies.

Angie

[GFinDC]

I will be requesting the testing for celiac this Thursday as we review yet again my labwk. Does this affect anyone's heart adversely??? I have palpitations and fast heart beat, pounding sometimes after eating or taking certain medications.

 

Hi Questions,

 

I hope you are still eating gluten.  The antibodie testing is useless if there aren't significant levels of antibodies in the bloodstream to detect with the tests.  The antibodies decline in the blood once you stop eating gluyen, so it is not good t stop gluten until after all testing is done.

[frieze]

Angie, not trying to be a nudge....but Vit D is measured in International Units, not milligrams.

[somanyquestions]

My vitamin D was 23 last time and I'm taking 1000 II daily.I'm wondering if I should be taking more. It's funny when I was 23 and began having arthritic symptoms, the Dr. put me on B6. But let. me back way up. Did anyone lose their baby teeth for no reason?? When I was 5 all my baby teeth had turned black and I lost them. Many dental problems all my life and skeletal problems. They've been trying to "fix" the anemia since 2011. Any thoughts??

[somanyquestions]

Angie in CA,

I have anxiety /panic attacks also. I've dealt with a significant amount of depression too. All this, the fibro, thebrain fog, confusion, tingling, the diarrhea and bloating, the deep bone pain and muscle pain is all related to food??? I'm a bit upset right now because I was referred to specialist after specialist for lupus and RA testing all negative, and point blank asked one of the Dr s. If any of this could be FOOD RELATED. Well she basically laughed at me. I kinda knew it all along

[GFinDC]

Angie in CA,

I have anxiety /panic attacks also. I've dealt with a significant amount of depression too. All this, the fibro, thebrain fog, confusion, tingling, the diarrhea and bloating, the deep bone pain and muscle pain is all related to food??? I'm a bit upset right now because I was referred to specialist after specialist for lupus and RA testing all negative, and point blank asked one of the Dr s. If any of this could be FOOD RELATED. Well she basically laughed at me. I kinda knew it all along

 

Hi Somany?s,

 

You might be interested in reading these:

 

Short temper thread

https://www.celiac.com/forums/topic/34917-anger-quick-temper-depression/

Anger, Quick Temper, Depression

https://www.celiac.com/forums/topic/34917-anger-quick-temper-depression/

A brain in the head, a brain in the gut NY Times  (serotonin, gut depression link)

Open Original Shared Link

[Gemini]

Angie in CA,

I have anxiety /panic attacks also. I've dealt with a significant amount of depression too. All this, the fibro, thebrain fog, confusion, tingling, the diarrhea and bloating, the deep bone pain and muscle pain is all related to food??? I'm a bit upset right now because I was referred to specialist after specialist for lupus and RA testing all negative, and point blank asked one of the Dr s. If any of this could be FOOD RELATED. Well she basically laughed at me. I kinda knew it all along

Welcome to our world!  I told my first and last GI specialist years ago that I only got sick after eating and could I have a problem with certain foods and he shook his head and said no.  After doing some testing that was the norm for 25 years ago, he commented on how"good" my gut looked.  They did not do endo's then as routine testing.  He then proceeded to advise me, very gently, to see a shrink because the problem was all in my head.....along with my symptoms.  Kind of an amazing thing when I hit the wall with Celiac and went gluten free, all my symptoms abated after a few years strictly gluten-free.  I was diagnosed at that time via blood work that was not available when I first had trouble.

 

ARGH!!!!!!!!!