Neurologic disorder or autoimmune?

Posted by denijl @denijl, Oct 6, 2021

I’ve had Fibromyalgia most of my life. However, in the last two years I’ve been steadily getting worse with more and more symptoms. I’ve had a brain MRI that was essentially normal. I’ve had four neck surgeries (C3-C7 fused) So I have a lot of pain from that issue too. The following list are my symptoms and some are getting increasingly worse. The Neurologist wants to do a nerve biopsy and a thoracic MRI. Does anyone have these types of symptoms? I’m frustrated, because I’ve know how to deal with Fibromyalgia, but this seems like something much more is going on. I’m loosing work and sleep from these issues. Could it be worsening fibromyalgia and/or a neurological disorder?

*08/2019 Olfactory hallucinations (Phantosmia)
*04/2020 Nocturnal itching of arms ( Brachioradial Puritus)
*03/2021 Electric shock sensation that goes through my legs and into my chest that wakes me up at night and is sometimes painful.
*Numbness, tingling and pain in
right toes
*Low BP
*Fast heart rate
*Dizziness (at times vertigo)
*Fatigue
*RLS
*Headache
*Nausea/vomiting
*Stomach pain/spasms
*Alternating constipation/diarrhea (IBS)
*Fatigue
*Shortness of breath
*Wide spread pain
*Urinary retention
*Feeling of being unwell (malaise)

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@denijl Hello and welcome to Connect! I am a spine surgery patient too with a single level fusion at C5/C6. I have had some of the same symptoms that were related to my spine problem and also to having thoracic outlet syndrome. All surgery creates scar tissue and scar tissue in the fascial layers creates tightness that can pull through out the body and compress nerves. The treatment for fascial scar tissue is myofascial release which is a type of physical therapy. I should also mention that if it has been awhile since your surgeries, it is possible that there are new spine issues that could be creating those symptoms. For example, urinary retention is a symptom of spinal cord compression in earlier stages and incontinence would happen at later stages. I did have retention because of spinal cord compression. I also had dizziness and vertigo when my vertebrae were turning and twisting independently because of muscle spasms. Surgery stabilized everything and that does not happen any more.

You may want the neurologist to test you for thoracic outlet syndrome which I also have. it can be common among spine patients because of injuries that also damaged the brachial plexus or the scalene neck muscles. It causes neck and chest tightness and can affect nerves that run through the chest. Electric shock pains are nerve pains from compression or inflammation and they can be generated anywhere along the path of the nerve from the spine to the place in the body that nerve serves. Itching is also pain on the low end of the scale.

I would ask the neurologist where they think the nerve issue is being caused. That is their job to figure it out. You also have pain in your toes and electric shock pains in the leg. It is possible for spinal cord compression in the neck to cause those symptoms, and that happened to me and confused a lot of surgeons, but that is also the reason I came to Mayo because my local doctors completely missed it. Sciatic pain can also come from a lumbar spine problem or a pelvis alignment issue or overlapping symptoms being caused by several sources. Here are a few links to information that may be of interest.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
https://mskneurology.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Can you tell me more about your history of spine injury and surgeries? What would be involved in your nerve biopsy? Have you had MRI imaging of your complete spine to either rule out of find other problems?

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