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Wondering if my chronic pain is actually a musculoskeletal disorder

Posted by ash0587 @ash0587, Mar 24 2:40pm

Hi all,
I have had widespread chronic pain since I was in my late teens that has been diagnosed and managed as fibromyalgia, however, I think based on other conditions and symptoms that I experience that I may have a musculoskeletal or autoimmune disorder that's being missed because of the docs focusing solely on the pain.
I'd like to share all of my diagnosed conditions and symptoms I'm dealing with in hopes that someone might recognize the combo of things I'm dealing with and have a suggestion on things I could look at with my docs. Thanks to everyone who reads this and gives me their thoughts!
So all of my pre-existing conditions are as follows:
Bicuspid aortic valve
Thoracic outlet syndrome (surgically treated)
Bilateral carpal tunnel syndrome (surgically treated 8 years ago but starting to flare again)
Bilateral De Quervain's tenosynovitis (treated with cortisone injections)
Pelvic floor disorder (too much tension causing chronic pelvic pain)
Platelet storage pool deficiency
Migraines (few times a year)
IBS
Fibromyalgia
Hypertension - diagnosed post second pregnancy
Pre-diabetes - diagnosed post second pregnancy

Symptoms I'm dealing with are chronic widespread pain, but I also can feel tension at my wrists, in my neck and back, and I get tendinitis in my elbows easily. I'm always exhausted and get brain fog frequently.

I've seen several different specialists and my last full work up was 10 years ago, and my thyroid, Ana, c-reactice protein, vit d, esr, and rheumatoid factor were all normal back then. The rheumatologist I saw at that time scoffed at the fact that primary care and pain management would order half of those since my symptoms don't line up with a lot of the common autoimmune disorders.
Thanks to anyone who reads this and hopefully I wrote this in a way that makes sense.

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dlydailyhope | @dlydailyhope | Mar 25 7:41am

@ash0587
I have had similar issues as you and can empathize with how hard it is to get doctors to connect the dots on all of your symptoms. I have bilateral carpal tunnel like you (just had surgery on the right a couple weeks ago) and my teen son has a bicuspid aortic valve.

It would be good to get updated bloodwork and full panels for thyroid ((TSH, T3, T4, TPO thyroid autoantibodies to check for Hashimoto’s), and iron (IRON, TRANSFERRIN, TIBC and % SATURATION). Are you working with a cardiologist, endocrinologist, rheumatologist, hematologist or neurologist?

Due to your symptoms in your neck, back, arms, elbows, wrists and hands, it would be good to see a neurologist that get EMG/nerve conduction studies of upper and lower limbs and the small fiber neuropathy skin punch biopsy due to widespread pain. You can take these results to an orthopedic spine specialist to get an MRI of your cervical spine to check for spinal cord/nerve root compression.

I was misdiagnosed for a long time when I had cervical degenerative myelopathy (spinal cord compression injury), spinal stenosis and degenerative disc disease. I had daily headaches, brain fog, neck/shoulder/back pain, arm/hand weakness and writing difficult my (would drop things), bladder control issues, heaviness in legs when walking, etc. I was finally diagnosed with Hashimoto’s thyroiditis, cervical degenerative myelopathy, small fiber neuropathy, iron deficiency due to heavy menstrual cycles, bilateral carpal tunnel, bilateral gluteal tendinopathy, bilateral partial hamstring tears, etc. This caused me chronic pain and depression. I fired one of my doctors who thought and treated me as if I was a hypochondriac due to my many symptoms when I was really dealing with a spinal cord injury causing many symptoms below my neck plus daily headaches.

Make sure to advocate for yourself and don’t give up pursuing proper healthcare and diagnosis/treatment.

REPLY
1 reply
ash0587 | @ash0587 | Mar 27 10:55am
In reply to @dlydailyhope "@ash0587 I have had similar issues as you and can empathize with how hard it is..." + (show)
@dlydailyhope

@ash0587
I have had similar issues as you and can empathize with how hard it is to get doctors to connect the dots on all of your symptoms. I have bilateral carpal tunnel like you (just had surgery on the right a couple weeks ago) and my teen son has a bicuspid aortic valve.

It would be good to get updated bloodwork and full panels for thyroid ((TSH, T3, T4, TPO thyroid autoantibodies to check for Hashimoto’s), and iron (IRON, TRANSFERRIN, TIBC and % SATURATION). Are you working with a cardiologist, endocrinologist, rheumatologist, hematologist or neurologist?

Due to your symptoms in your neck, back, arms, elbows, wrists and hands, it would be good to see a neurologist that get EMG/nerve conduction studies of upper and lower limbs and the small fiber neuropathy skin punch biopsy due to widespread pain. You can take these results to an orthopedic spine specialist to get an MRI of your cervical spine to check for spinal cord/nerve root compression.

I was misdiagnosed for a long time when I had cervical degenerative myelopathy (spinal cord compression injury), spinal stenosis and degenerative disc disease. I had daily headaches, brain fog, neck/shoulder/back pain, arm/hand weakness and writing difficult my (would drop things), bladder control issues, heaviness in legs when walking, etc. I was finally diagnosed with Hashimoto’s thyroiditis, cervical degenerative myelopathy, small fiber neuropathy, iron deficiency due to heavy menstrual cycles, bilateral carpal tunnel, bilateral gluteal tendinopathy, bilateral partial hamstring tears, etc. This caused me chronic pain and depression. I fired one of my doctors who thought and treated me as if I was a hypochondriac due to my many symptoms when I was really dealing with a spinal cord injury causing many symptoms below my neck plus daily headaches.

Make sure to advocate for yourself and don’t give up pursuing proper healthcare and diagnosis/treatment.

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Thank you so much for all of this info. I currently just work with my PCP for the pain stuff, and haven't had a neurologist in awhile due to not loving the group I have to use based on my insurance. I'll definitely look into working with a neuro again though. Thank you so much for all the suggestions, I appreciate it very much!

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