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Old 09-01-2006, 10:10 AM
Steve Steve is offline
Junior Member
 
Join Date: Aug 2006
Posts: 51
15 yr Member
Steve Steve is offline
Junior Member
 
Join Date: Aug 2006
Posts: 51
15 yr Member
Default At BT1

when I first tried to log in, most of my choices were already taken (it's a much bigger forum!). So I signed in as "SteveInTrouble." Now you know what's missing.

Aussie, you're one of the people whose symptoms seem most like mine, and if I had to guess, I'd say you have what I had. As I said, nobody knows what triggered my sx--whether it was neurological, or musculoskeletal, autoimmune, an endocrinopathy--no one knows. However, what kept it going was muscular and connective tissue actively compressing nerves in multiple places all over my body. There was also something going on with my brain, which was becoming oversensitized and producing "flash" burning sensations (these were different from the steady burns in my hands) as well as bizarre responses to touch on my face. At one point, they wanted to do a functional MRI, because they've found anomalies in a lot of people with facial pain. But I got (mostly) better first!

Here are some highlights from my therapy program. I think doing everything together is what helped me.

- I started with trigger point massage. Don't get fooled by the word "massage"--it's not a spa treatment, and it's fairly painful. But there is almost no other way to get rid of trigger points. The massage not only made me better, but it was the way I discovered that some of my symptoms were related to neck problems.

- I had TMJ, so I got appliances for day and night. I also had two biofeedback sessions, which were hugely helpful. My neck muscles were electrophysiologically exhausted, I found, and I also had lost the ability to relax muscles at will--they remained tense even after I put my arms down, for instance. It only took two sessions to learn how to address that, though it took longer to fix. Also for TMJ, I got specialized trigger point massage inside my mouth--painful but necessary. I had to rexamine my posture, computer use, gym routine, all that.

- I went to a physiatrist and saw a PT who does manual manipulation--very important. So I'd start with a few exercises to warm up and balance out my back strength; I have some syndrome whose name I cannot recall that causes me to slouch and distend my spine and neck. But after that, it was hands-on. The PT did neck traction; she found the connective tissues around my cervical vertebrae were so tight, they were causing nerve irritation. She also mobilized my first rib, which helped my TOS-like symptoms a lot. And she used something called a "wedge" on my spine, which helps separate the vertebrae and loosen the incredibly tight connective tissue I had there.

Believe it or not, that's the short answer! Hope it helps, Aussie; your sx really sound like mine--full body migratory sensory neuropathy with prickling and burning, transient numbness, whole bit. And I mostly got over it without taking a single pill.

The physiatrist, incidentally, as well as the TMJ specialists all told me that while neurologists have not heard of this syndrome, and it doesn't even have a name, they had all seen it multiple times before!
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