So glad you found a way to get here, Missed you all!

OK Steve, I'll rise to your 'bait', what's HAPPENED? Don't leave us in suspense, after all, the change indicates something GOOD going on and we all can use as much GOOD NEWS as we can find.

Out with it. - j

Well, I'm almost all better! Not entirely, and not without setbacks, but close enough.

I found great help moving away from the "diagnosing" professions like neurology to the treatment-focused professions like physiatry, PT and even TMJ dentistry.

The neurologists stuck very close to the evidence-based research reported on drug-company-funded clinical trials. And there's a lot that those trails do not even study. So I got a lot of blank looks from neurologists.

But when I went to the physiatrists, specialized PT folks and specialized TMJ folks, I heard something unexpected: "Oh, yeah. We see stuff like this all the time. There's not much research, but it's starting."

So, I apparently had a syndrome that involves both nerves and muscles. Nerves overstimulate the muscles (I had fasciculations and many, many trigger points), while muscles (and their effects, like bad posture, tight cervical spine, elevated first rib, etc.) irritate the nerves.

It's a chicken-and-egg question, which comes first. There's a theory it comes from neurotransmitter imbalances in the brain; another suggests an autoimmune attack that goes after potassium channels in nerves (the nerves' "off" switch); and underneath it all are typical musculoskeletal irritants like bad posture, weightlifting, computer use and so on. It apparently also leads to early central sensitization, causing strange referred pain syndromes. The first PT told me she has seen people who get leg pain from manipulation of their jaw muscles, even though this makes no physiological sense at all. She also said that without intervention, this can lead to things like full-blown TOS or RSD.

In my case, a physiatrist told me my adverse reaction to Levaquin years ago may have predisposed me to systemic reactions like this.

Anyway, did at lot of work with PT, dentists, trigger point release, biofeedback, and stuff I can't even remember. I remember the first trigger point session I had. My arms had been so sensitive it was hard to wear sleeves or put my arms on armrests or a bed. Riding home, they still hurt but there was a very strange change in the sensation--like it was breaking up into separate pieces, if that made sense. Over time, I got better, and my last physical therapy session really reduced the holding-a-red-hot-cactus sensation in my hands that made it almost impossible to use a PC.

End of story: I got better! I'm almost back to normal, with some setbacks now and then. Now I have to pick up my business, which suffered under neglect (anybody need a high-priced marketing copywriter ?), but I'm very happy about my health.

I've been meaning to share this, because I've noticed some people on this boards with patterns that strongly suggest a syndrome similar to mine, and I just wanted to pass along the good news.

Well, that was kind of long, but that's my story!

I am very happy to hear you have been doing so well. I don't have the medical knowledge that alot have on the forum, and as such had to read your post 3 times .

But what I did get is that you have found a large degree of recovery through PT. Regardless you have found relief,and you sound like a new person.

One of the things that I don't like is that all those wonderful archives and old posts are not available anymore, either temp or perm.

But from memory, did you not have a fully body syndrome somewhat like myself and glenntaj?

May I also ask what the PT entailed?

Once again, I am very very happy to here you are doing so well.

Still is a mystery.
You had a nice lenthy post there, and I'm gald you're feeling better...........but
WHAT'S MISSING (?) (from your name)

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!

When I was admitted to hospital the first time, they did MRI of brain and neck. Brain was normal, but C-spine showed bulging disc, stenosis, arthritis,and narrowing, no cord compression. I have had burning pain and tingling in neck,arms,and shoulders from this disc for years. But I never knew that it was bulging. But I think what happened to me when my PN came on was quite different. I want to explain more, but I have a full house this morning, alll the relatives have stopped by and I have no privacy now. I will poste later on when I am alone,and can think.

You have the miraculous gift of positive mental attitude. I appreciate your kind words.

Wow Steve, that sounds very much like the chronic myofascial pain disorder I suffer with.... the fascia connecting everything and the nerve signals being all bizarre! But, I would think a physiatrist would have known that, if so. Of course, I could also be confusing peripheral sxs with the cmpd! TC! JD

Ok now before my PN, I had a discectamy on Lumbar spine at 2 levels. I have had a very bad back since 1999, chronic back pain and sciatica. Over last 4 years my neck started hurting too. When I carried my purse or any shopping bags around, the muscles in neck would burn, sting, and ache. But none of this really bothered me. I just accepted it.

Before my PN this was the only problem I had. Before my PN I had both flu/bronchitis and gut infection with H.Pylori. Then PN came on with bizarre burning in eyes,face vertex of head and made it's way downward. To be honest I don't think there is one nerve in my whole body that hasn't been affected as I have been in pain absolutely everywhere. Since 18 months ago when PN came on there has been some recovery and abating. I would say about 50-60% better.

But I have alot of deep tissue like pain,aches,tension,zapping, & prickling. I was diagnosed with post-infectious a typical sensory neuropathy through a process of molecular mimicry. I also have developed hypertension, and what appears to be anxiety/panic. I have just started seeing a phychologist for this because this is probably the thing that concerns me the most. I am sick and tired of the anxiety, it's quite exhausting. I also have a bit of either TMJ or extra pyrimidal symptoms from side-effects of my Trycilic. I bite my tongue all the time,and clench my teeth. My jaw deviates on it's own. By the way I stopped the tryciclic and my anxiety reached unsurmounted proportions. I had no idea just how bad off I was until I stopped the tryciclic. I am also having trouble sleeping at nights. So that's an update on me. I take hypertension meds,and have to take Advil for pain, but I soldier on, and am thankful that it's not worse. All my routine bloods are continuously normal but my ESR is always slighty raised. (0-16 normal range). Mine is 25-29 ususally. So there is some degree of inflammation somewhere. But that can even be from my discs when they flare. My blood creatinine is usually a tad bit low, but I have had kidneys checked and they are fine. Did a 24 hour urine test. Have been told that slightly low is normal and also good.

But anyone who has any recovery is truly inspirational and gives us all hope.