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.

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.

Steve, I know you worked overtime swimming upstream against the standard medical tide. I am soo happy that you've found practicioners that were able to bring that elusive word "RELIEF"! Persistence can pay off!
Was it myofascial trigger point? Treatment can be almost as bad as the problem when first starting. I'm hurting just thinking about it.

Aussie, don't give up! It sounds like you are on your journey, anxiety is the pits and it sure doesn't help anything along the way, does it?
It may take time, but your persistence will pay off in the long run, it's got to!

Good thoughts to both of you - j

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

It was chronic myofascial pain, though I don't know what problem actually came first and caused the others. It will probably be an ongoing issue for me, and can still be easily irritated; getting sick makes it worse, and winter poses extra problems, because cold worsens muscle tension. But it's certainly a lot better than it was!

Yes, the treatment was painful. As time went on, I felt that "hurts-so-good" feeling people often report. But at the beginning, the pain was awful. The neck muscles were so dysfunctional, massage felt like the therapist was snipping my skin with a nail clipper. However, this is one area in which the saying is true--no pain, no gain!

Now, even the tinnitus is better, but I sure wish I could get rid of it once and for all.

and has worked for athletes for over 40+ years, and for performance animals for 30[?] years. I'd learned techniques on large animals over 20 years ago, and well...their whole attitude would turn to peanut-butter...after the 'initiation' phase! YEP, FEELS SOOO GOOD WHIN YA STOP! I'd seriously been considering animal therapy courses when my magic fingers went DEAD. Oh well.

Touchy-feelie? Who cares if it does the JOB? Never exclude the outlets you instinct tells you to go to. EVER. I am just happy that there's one less hurtin' person in this world.. There's enough elsewhere for sure. -Explore what's proven to help, and can't hurt, don't waste $ on fringe things, and well, hope for the best elsewise!

Aussie - you are getting there! - j

Even when I use the magnassager, sometimes I have to do it with my own two hands. The magnassager is terrific but nothing beats my hands.

Sometimes when the PN is so bad (like if the weather is not cooperating), I have to knead his upper thighs and he says the blood just goes right into his feet. He absolutely says it's the greatest feeling in the whole wide world.

Then I take my arms and roll them (pressing hard) up his spinal column.

I had shown his chiropracto/neurologist what I do and he said "hey, it seems to work so keep doing it". Never had a bad reaction since I've been doing it and he is like a new man.

I do his shoulders, his neck, but when I start from the middle of his back, and do my thing with my whole arm and I press into his spinal column, it says "this is the best thing since sliced bread". Now believe it or not, Alan has bulging and degenerating discs.

I'm just happy that I can do this and I don't break his spine when I do it but he's a different person since he gets the adjustments from the chiropractic/neurologist. He only goes once a month now so in between the visits he has "ME".

I once had my 85 lb girlfriend walk on his back. He went nuts, he was in heaven.

I mean, don't the japanese do this in the massage parlors.

I would love to see his face if I walked on his back. Can you imagine? I'd kill him. But my girlfriend is anorexic and soaking wet, she's 85 lbs.

When he told his chiropractic/neurologist that my friend walked on his back he said "we really don't advise that, because she can push something out of place"

Really?? then what the heck am I doing when I take my arm and press into his spinal column and go up and down. And when I put the magnassager into his back, that sucker really gives a deep tissue massage.

I think massage is the best thing (if it's done correctly). I only wish Alan would learn how.. When he does it, it feels like a wet noodle.

He has no idea how to give a massage.
I should have gone into the business.

mel

Just thought that I would clock in as an old (and getting older) braintalk skulker.

For those that know me, hi.........for those that don't, nice to meet you and I hope you're doing ok..

Graham