Year Long Progression of Neurological Symptoms. Exhausted. Angry.

Thanks for the further info. There are parts of CSS that definitely sound accurate to what I experience. But my guess is that FND, CSS, Fibro, etc...all cross and intersect causing blurred lines. And I'm not sure how important it is to nail down a diagnosis, once the major treatable players are ruled out (MS/Parkinsons etc..). They all seem to be psychosomatic in nature, making treatment plans very similar,( and vague!)
When I look up CSS, it seems to focus a lot on pain...which I do not have a lot of...knock on wood. What are your thoughts on that? I have burning feet, weakness, tremor, and everything else I mentioned...but not pain. Having said this, I do believe my CNS is overreacting to basic stimuli, (foot touching sock, pant touching leg etc... resulting in neuropathy).
My discharge papers after being diagnosed with FND were a follow-up with a psychologist, psychiatrist, and to review 2 websites that had info on FND. Pretty underwhelming I would say considering how hard I worked to get into MGH and their FND specialty department.
I believe my body is in over-protection mode...stuck in some sort of fight/flight. Trauma-based response. For instance, I've lived in hockey rinks my whole life, and suddenly I have a startle response to pucks hitting the glass etc... Never happened before.
And so while I am always managing symptoms, I believe this is my body's way of telling me there is underlying stressors but at the subconscious level, which is what makes the vastness and unpredictable nature of my symptoms so frustrating.

@sherwood06 You really nail so much on the head with your analysis of ruling out major treatable players like auto immunes. Although my symptoms mildly began as a child it wasn't until age 41 that major changes began. I had every test under the sun because process of elimination is important, but I put myself through misery in doing so, because I was damned if I was not going to find answers in hope of a "fix". I look back and see how the fear and panic induced stress, worry, and catastrophizing thoughts which upregulated my CNS even more. Fight/flight mode is exactly it. Underlying stressors is exactly it. Intersecting blurred lines is exactly it. You've got your finger on it.

Do you feel your doctors have ruled out diseases or conditions? Do you want a second opinion? It's very important to make sure you feel confident before you are ready to move on and learn how you are going to manage and calm your neurological condition.

Whether someone has chronic back pain, migraines, Fibro, CSS, FND, etc...the end result remains the same, there has been a neurological upregulation in the CNS and the body has not healed normal, responded or moved on, resulting in getting stuck in chronic conditions. The good news is there is a comprehensive game plan of calming the system, re-teaching/training (neuroplasticity), strengthening and behavioral changes are going to help. Whether you chose Mayo PRC, another rehab, or tackle it yourself (which I think you can do), you've got this!

I'm very glad you are not experiencing pain. Your other symptoms however can not only be annoying, but disruptive, I get that more than know and am willing to help in any way I can by sharing my experience and tools.

What is your next step?

Sorry you are having such challenges. Have you considered Mast Cell Activation Syndrome?

You had surgery to free your spinal cord which sounds like the surgery they want to do to me as a last resort. They called the surgery a Laminectomy or Decompression. The surgeon said sometimes by cleaning up the spinal cord area, will take away the numbness that I have. Since then, I have developed incredible nerve pain in my right foot, ankle and achilles area.

@emf21 There are different ways that the spinal cord can get compressed. In my case, the cord compression was caused by a disc that collapsed and spilled the contents into the spinal canal, and then bone spurs grew there next to it. To decompress this, the damaged disc is removed leaving a space that needs to be filled by something like a donor bone spacer or a surgical implant that takes its place. My surgery was an ACDF for Anterior Cervical Discectomy and Fusion.

Compression can also happen because of an enlarged ligament that runs the length of the spine when nothing is wrong with any of the discs. In that case, surgeons can enlarge the space inside the spinal canal by cutting through some of the bone covering and lifting it up. That is what a laminectomy does. Here is a link tat describes it.
https://www.mayoclinic.org/tests-procedures/laminectomy/about/pac-20394533
You're right, surgery is a last resort. When the compression is bad enough, and nothing else helps, it is the only way to improve the situation. The best results in spine surgery also happen before permanent damage has occurred, so that time table is something to discuss with your surgeon. I understand the pain because I was there too, and my surgery did take away all my pain.

Have you every heard of stem cell therapy? I’d send you a link if your interested.

Good morning, @262mpeaches. Are you referring to stem cell therapy-regenerative medicine for repairing discs in spinal diseases?
Is this a procedure you’ve experienced? How has it worked for you?

I too have all these strange symptoms. I tried to watch the video and it will not work, it said the video is private.

@joannemm30809 Hi Joanne. How have you been doing? Yes, Dr. Sletten's video on Central Sensitization Syndrome has been updated. The previous video is no longer able to be viewed. Here is the new video:

Can anyone clarify covid status or vaccination status because I am having some of these symptoms since I got covid in November and a friend has other weird neurological symptoms after her booster.