Nerve/muscle Issues

[suziq0805]

I'm wondering if I could have celiac or an intolerance. I went through years of muscle pain/weakness/tightness and also developed nerve pain- felt like a sunburn in the muscles around my armpits. No doctor was able to figure out why this was happening. I'm also a musician/music teacher and at the worst of my symptoms it was difficult for me to move my fingers enough to play music that I knew I was capable of playing. It was like my fingers just wouldn't move like I knew they could. Physical therapy greatly reduced my symptoms, but they've been there to some degree for 7 years. Symptoms began in my wrist and gradually "spread" and increased throughout 5 years and the last couple years have been pretty decent. The more I use my arms, more I conduct rehearsals for my students and more I play music the more issues I have. For those of you with nerve and muscle issues do your symptoms vary in amount and severity or is it constant?

[IrishHeart]

I know this pain you describe all too well!

For me, this nerve and skin"burning" was wide- spread and debilitating. It feels like the worst sunburn imaginable, doesn't it?! I had it from head to toe at one point. I could not even lay or sit down, I was in agony. I really thought I'd rather be dead than be in this much pain. Combined with major gastro problems and other neuro symptoms like cognitive impairment, it was more than I could bear.

Once off gluten, things have started to change!

I receive PT and nueromuscular massage, trying to regain the use of my muscles and joints that were deeply affected by celiac disease.It has lessened with the exclusion of gluten, treatment of both B-12 and folate deficiency anemia and Vitamin D deficiency, magnesium supplements and LOTS of appropriate stretching and exercises. But, it hurts to do so because the muscles are so impaired by malnutrition.

Before this, though--NO amount of PT or chiro or acupuncture or anything worked --for 3 years!!!--because of the gluten/celiac disease!

The nerve compression and trigger points--those hyper-irritable knots in shortened muscles, weakened by lost muscle mass and dysfunction--make my life hell. What you feel in your armpits? I feel this, too--and in my hip rotators as well---and in various other muscle/joints/bones (elbows, ankles, fingers.

(This is NOT the same as FMS "tender points")

This pain-- despite continuing PT-- may continue because those knotty trigger points are perpetuated by overuse, repetitive motion (like you conducting perhaps??) , poor posture, food intolerances, malabsorption and vitamin/mineral deficiencies (like Folate def. for example). These deficiencies need to be addressed and proper trigger point release needs to be done so you can free up your arms for good.

You may wish to read up on trigger points in muscles and myofascial pain. I am betting they are most certainly involved in your discomfort.

My doctor, a trigger point- and gluten-savvy chiropractor, massage therapist and a pelvic-floor PT all agree (finally!!) that my horrific pain is certainly connected to the muscle weakness and loss of muscle mass I experienced with celiac disease. But I had to go through years of doctors and specialists (from rheumatologists to neurologists to physical medicine doctors ) looking at me like I was nuts --and me insisting I was not --before anyone took this burning pain, restricted motion and joint pain seriously. They just offered me DRUGS--which I do not take-- as they made me sick. One suggested I buy a "scooter" to get around and "accept my fate".(I did not. )

You may get more relief if you can pinpoint what may be keeping those muscles so constricted and compressing the nerves.

Does your PT do trigger point work?

Hope this helps...Best wishes!

P.S. PM me if you want more information. I would have continued living in that hell I was in for years--if I had hadn't researched the connection between TrPs and gluten intolerance and the effect on muscles. Hopefully, in time, I'll get my full mobility back and stop this burning pain.

[suziq0805]

I know this pain you describe all too well!

For me, this nerve and skin"burning" was wide- spread and debilitating. It feels like the worst sunburn imaginable, doesn't it?! I had it from head to toe at one point. I could not even lay or sit down, I was in agony. I really thought I'd rather be dead than be in this much pain. Combined with major gastro problems and other neuro symptoms like cognitive impairment, it was more than I could bear.

Once off gluten, things have started to change!

I receive PT and nueromuscular massage, trying to regain the use of my muscles and joints that were deeply affected by celiac disease.It has lessened with the exclusion of gluten, treatment of both B-12 and folate deficiency anemia and Vitamin D deficiency, magnesium supplements and LOTS of appropriate stretching and exercises. But, it hurts to do so because the muscles are so impaired by malnutrition.

Before this, though--NO amount of PT or chiro or acupuncture or anything worked --for 3 years!!!--because of the gluten/celiac disease!

The nerve compression and trigger points--those hyper-irritable knots in shortened muscles, weakened by lost muscle mass and dysfunction--make my life hell. What you feel in your armpits? I feel this, too--and in my hip rotators as well---and in various other muscle/joints/bones (elbows, ankles, fingers.

(This is NOT the same as FMS "tender points")

This pain-- despite continuing PT-- may continue because those knotty trigger points are perpetuated by overuse, repetitive motion (like you conducting perhaps??) , poor posture, food intolerances, malabsorption and vitamin/mineral deficiencies (like Folate def. for example). These deficiencies need to be addressed and proper trigger point release needs to be done so you can free up your arms for good.

You may wish to read up on trigger points in muscles and myofascial pain. I am betting they are most certainly involved in your discomfort.

My doctor, a trigger point- and gluten-savvy chiropractor, massage therapist and a pelvic-floor PT all agree (finally!!) that my horrific pain is certainly connected to the muscle weakness and loss of muscle mass I experienced with celiac disease. But I had to go through years of doctors and specialists (from rheumatologists to neurologists to physical medicine doctors ) looking at me like I was nuts --and me insisting I was not --before anyone took this burning pain, restricted motion and joint pain seriously. They just offered me DRUGS--which I do not take-- as they made me sick. One suggested I buy a "scooter" to get around and "accept my fate".(I did not. )

You may get more relief if you can pinpoint what may be keeping those muscles so constricted and compressing the nerves.

Does your PT do trigger point work?

Hope this helps...Best wishes!

P.S. PM me if you want more information. I would have continued living in that hell I was in for years--if I had hadn't researched the connection between TrPs and gluten intolerance and the effect on muscles. Hopefully, in time, I'll get my full mobility back and stop this burning pain.

I haven't been in physical therapy for a couple of years. Over the last few years I have been through occupational therapy twice and physical therapy twice.....the 2nd time was 15 months worth. But I do have to say I went from having days where it was painful to walk due to knee issues and I was struggling with my arms feeling too heavy for me to be able to conduct rehearsals to being able to function pretty normally. I still have to make sure I don't overdo things, but I don't often have to pass up taking a walk or decide I'm not up for vaccuming anymore. Having celiac could explain a lot of things but I've thought the same thing with other conditions I was diagnosed with (to later find out it was a misdiagnosis). I have just thought it was an overuse injury (made sense with being a musician). My physical therapist specialized in postural restoration. Other therapists had just focused on my arms since that's where a lot of my symptoms were. But she looked at my entire body and thought I had a really weak abdominal core and through a domino effect I was having symptoms in my upper body. We did a lot of stretches, work on an exercise ball and some work with therabands. I only had the burning pain in my armpit area...I only get that occassionally now and when I do it's for a very short time. The muscles throughout my arms, neck and upper back always felt so tight. It felt like I needed to stretch them out but no amount of stretching would feel like it was helping. My arms felt so heavy also...it was weird. Luckily I don't get that sensation too much now. These symptoms had a tendancy to come and go. I would have periods of time where I suffered with them and other times where I felt pretty good for awhile. Then I began having less time between "flare-ups". After the last round of PT I have had one big flare-up....at the same time I was doing a lot of work with the muscles that were hurting...but it lasted only a few weeks.

[IrishHeart]

Then, maybe yours is triggered more by repetitive motion perhaps?

Yes! My PT and MT all say the CORE muscles are a problem for me as well. I work on those, too. Geesh, rehab is tough work, isn't it?!

The tightness in the neck, shoulders, upper back, jaw---seems to be a common compliant I hear--on here and in a celiac support group I attend. I do not think it is necessarily a celiac disease thing exclusively, of course, but it seems interesting nonetheless.

I hope you continue to enjoy less time in the "burn mode"! You sound as if you've come a long way!! Best wishes!