Nerve pain, electric spasms in legs, feet, back, arms etc.

Posted by clarabell @claremcglo62, Jun 19 2:48pm

Hi All, over the last two years I have woken a few times to numb hands. The Dr sent me for carpel tunnel testing which came back negative. I thought it maybe circulatory so starting exercising a lot more and things improved. In Feb 2024, I had an awful flu (lid me out flat for a week). Since then I developed electric spasms in my arms, legs, stomach, back etc all over. I had an MrI on my brain and whole spine. These all came back normal/healthy. The Dr then prescribed Ampitriptilyne for nerve pain and to help me sleep as these spasms were keeping me up at night.

I then experienced a very sharp pain in my left neck which radiated down to my shoulder and exterior arm. It lasted at least 10days and I was swimming going to Phisio and a chiro to help with this.

The neck pain still comes and goes so the Dr referred me to the orthopedic Dr for another MrI of my whole spine. This again came back healthy apart from L5/S1 where my disk is protruding and pressing on a nerve. This explains the pain in my right leg and right buttocks which I have had for about a year.

The ampitriptilyne is helping me sleep and the spasms have reduced but I am still getting them at night and sometimes they wake me up despite being on medication.

Anyone have any ideas of what more tests I should push for? Or medication? Or anything else I could do? I am swimming, cycling and doing Pilates to help with symptoms. We are eating mainly plant based diet etc.

Any advice would be appreciated. I am getting very anxious about leaving my daughter without a mother and I really don’t want her to have to care for me. Thank you so much in advance. Best wishes, C.

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celia16 | @celia16 | Jun 19 3:04pm

I have seen 2 neurologists for similar symptoms.
. Have you gotten an evaluation? Have you had an EMG? You might explore those things. My second neurologist diagnosed me with Vitamin b12 deficiency. I’m being treated for that. It’s brutal. I’m also being evaluated for Sjogrens. There are many things to explore.

clarabell | @claremcglo62 | Jun 19 3:12pm

Thanks so much Celia. I have seen one neurologist. She checked my reflexes and did a physical exam. She said my muscles are strong and I haven’t got any weakness. She said she is happy to see me again if my symptoms progress but that my symptoms could be stress and anxiety. I don’t think so as I am becoming stressed because of them. What is an EMG? I will do some more research. My blood tests says my B12 levels are good so not deficient in those. The Dr says my bloods are all fine and because of this they won’t test for anything else. I am worried that my nerves are misfiring or going haywire and will burn out eventually? I’m not sure if that is even possible but it reminds me of a battery running flat but I don’t feel weak. It’s very strange I can still swim 40 lengths and cycle etc. Never experienced anything like it in my life. Thanks so much for your advice I really appreciate it. I may try and see another neurologist xx

celia16 | @celia16 | Jun 19 3:24pm

In reply to @claremcglo62 "Thanks so much Celia. I have seen one neurologist. She checked my reflexes and did a..." + (show)

I was much like you. I was working out, active, eating right, strong, felt great, but had various odd symptoms. Great news your B12 is good.

Ref, reflexes….I did well on them initially, but the second neurologist used a distraction technique and discovered that made a difference. That was not done the first time.

I was made to feel that my anxiety was driving my problems, but I now know that was not true. My instincts were right. The cause for my systematic ailments should have been caught, long ago. So, be your own best advocate. Be proactive. I sought help years ago, wish I had been more insistent. Please post what you find out.

EMG are a series of tests where they measure electrical activity in the nerves in your affected body part. It can detect certain kinds of nerve damage. Mine were normal, but that didn’t mean I was clear.

clarabell | @claremcglo62 | Jun 19 3:49pm

Thanks Celia. I have an appointment to speak to the Dr on 2nd July and I will ask for the EMG tests. I’ll also email the Dr now and ask for them. Really appreciate your advice and help. I’ll let you know how I get on. Best wishes.

celia16 | @celia16 | Jun 19 4:37pm

In reply to @claremcglo62 "Thanks Celia. I have an appointment to speak to the Dr on 2nd July and I..." + (show)

Good luck with everything. I hope you can find answers and help.

Jennifer, Volunteer Mentor | @jenniferhunter | Jun 20 4:05pm

@claremcglo62 You may be describing Thoracic Outlet Syndrome with your arm symptoms. It has symptoms that overlap with Carpal Tunnel and is most often missed by doctors who are not familiar with it for several years, so a patient goes from doctor to doctor with no answers, and sometimes being given alternate explanations that are without merit. In fact, I had carpal tunnel surgery that did not completely cure my pain because the surgeon missed that I had TOS and then he refused to even authorize physical therapy for me. Per my neurologist, they gloss over this in med school in just a day or 2. TOS is a compression syndrome that can originate in the neck in the scalene muscles and also at various places under the collar bone and under the pec minor muscle near the arm pit. A muscle spasm in the neck can trigger symptoms that can move vertebrae or change alignment. TOS has a few variations in that it can compress nerves and/or blood vessels.

It can be common in cervical spine patients. I had a cervical spine injury with a whiplash and later had a C5/C6 fusion that improved symptoms, but I still have TOS. I had been working with a physical therapist when the spine problem became apparent and I stopped progressing. My hands used to get cold and turn blueish purple or blotchy. If I had my neck at a particular angle or position, it would trigger pain down my arm or numbness fairly quickly. Neck support while sleeping is very important because the arms can go numb at night. It is a positional problem in that raising the arms above the shoulders causes compression and cuts off blood supply. Waking up with an arm totally numb when you are not laying on it is a clue that you may have this condition.

The good news is that usually physical therapy is the best way to treat TOS and posture is very important. In order to get a correct diagnosis, it is best to find a medical facility that lists TOS as a condition they treat. This is why I came to Mayo as a patient with a cervical spine issue and TOS and they needed to assess how much of the symptoms were caused by the spine vs the TOS. Neurologists diagnose this, and surgeons who treat this may be vascular thoracic surgeons. They don't always recommend surgery, and surgery creates scar tissue that can make TOS worse. My physical therapist also does myofascial release to loosen up all the tight tissue that causes the compressions. Here are some links to information.

Mayo Clinic information
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Myofascial Release Discussion
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
MSK Neurology Website
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
Sometimes too much exercise or lifting involving the shoulders can aggravate TOS. Stretching is usually good especially when stretching out the pec muscles on the front of the chest.

Will you consider consulting a neurologist with experience in diagnosing TOS?

gregd1956 | @gregd1956 | Jun 20 8:55pm

Dear Charabell,
You wrote ‘my disc is…on a nerve’ & Jennifer thx for the Mayo online about bones, also.

2+mths ago, I had a spine surgery on the very bottom of my back. A big nerve was stuck on my spine/bone. They moved that nerve and the pain, from my rear-ends to the bottom of my back legs, got rid of the pain.

Yes, Ms. Jennifer a as time goes, a surgery on my back, could hurt in my future. I hope not - hopefully 😇

Dr. added another electric battery in on my outside back from my rear-ends to the top of a few inches higher takes 30 mins per day for the coming 9 mths. It’s using across my bone under my backs.