I was recently diagnosed with Syringomyelia without chiari malformation. I'm still getting the run around about what did cause/ is causing my syrinx(es) I don't want to get into it all right now.
Ok, I'm going to start out with some kinda silly questions... Like:

Can I still do yoga? I've read some places that twisting or bending the spine is a really bad idea with syringomyelia... True?


Medications- has anyone had good experiences with any medications for pain? Most of the time I feel like someone is trying to rip my shoulder blades apart but nothing seems to help. They've prescribed lyrica, robaxin, ultram, flexeril, mobic, even lortab... a couple of which knock me out but I don't want that most of the time, I just wish something would help take the edge off for those days when I wake up crying..

Rollarcoasters? Am I now one of the "do not participate if you have-" blank qualified?

Swimming- I know overhead strokes are painful as &#@% but would just floating around and maybe underwater froggy style be ok?

Looking up/ over shoulder/ down? Anything specific to avoid?

How do I find out my limits? Like, who says "you can't lift over x pounds or stand up for x minutes, etc" ? Or do I just always test myself? I mean, I know when things go numb to stop doing that, or when I get vertigo to sit down... I'm just curious if there's a chart or something... or should I just not do any of that?

Anything else I should know, in general?

No charts.

If you cause symptoms, its not good. If It hurts, don't do it. In my experience if you cause symptoms you will worsen the injury to the nerves. I know for a fact as I have clearly worsened my symptoms with overhead work.

No rollercoasters.

Yoga, does it cause you symptoms?
Careful with strenuous activity.

For me pain meds are not good as I am active as can be and would get on a skateboard tomorrow if I could, not to mention motorcycles, travel, carry suitcases, travel, finish building my house..
If I take pain meds I will cause injury as I will push the limit due to less pain. Pain is the body's alarm system. It is very hard to stop but better for you long term. You really don't want to take stronger pain meds then those you have tried unless you got constant pain and you can't get up and you can't function. If there is anyway to function with less pain medication then go that route. The strong meds have a lot of long-term side effects. The longer you take them the worse it gets.

I guess I wasn't clear, I really don't want stronger medicines, I want something that.will help without knocking me out. I guess maybe that doesn't exist. I don't take anything on a regular basis. I was on lyrica for months and all that did was make me gain weight so my new neurologist took me off it. I do have pills for pain but I have only tried them once or twice each, because all they seem to do is make me sleep

Yes, I also gained weight from lyrica. Gained some, then stabilized. It seems to be the only thing that does something better then nothing. I take it and lots of ibuprofen. I have the strong narcotic stuff which I save for the bad moments. Pretty much all narcotic painkiller will knock you out and make you physically dependent. That in itself is a problem as when ever there is not enough medicine in your body you get withdrawal symptoms that stack on top of the problems you already have.




Edit: I like to add that I have been through all the strong meds and this is how I came to the conclusion that pain management using these drugs comes at a tradeoff that one has to carefully weigh. Some of them would knock me out so much I couldn't even drive. My wife had to take me everywhere, no work. I have had lots of back pain problems and 2 mayor spine surgeries (anterior fusions and artificial discs). The surgeries did help me more then pills. Both times. The neurological problems I get from the syringomyelia there are literally no pills that can deal with this thing.

Hi, im brand new here and just lurking. I know exactly how you feel. Some days I can barely get out of bed due to the back pain. Been RX'd all kinds of stuff (including Lyrica, which caused weight gain) and nothing really worked for me either.
I am 37 and healthy except for thyroid issues that im working on, and a 10 MM chiari herniation that showed up on an MRI after chronic neck pain.

Ive tried very gently chiropractic treatment, PT, massages, heat, ice.. ugh.

Once thing that is helping is backlofen and flexeril, cut in half, twice a day and then for that wicked tight pain in the back (spasms due to the chiari) i am rolling back and forth for 5 minutes or so on a very small soft ball, right between the shoulders. The idea is try and restore some of the curve..

I dont know about you guys, but X rays showed the constant spasmasing pulled the lordosis curve from my back and neck, causing more issues
I am having botox done next week and then im trying an accupunactuarist:

Do any of you get bright, red, hot, burning ears? I read that is a sign of cranial nerve damage.. its getting old

Tracy210T;969479, I too am new here. I have had a 6mm (at least it was when diagnosed) syrinx since 2003. I get red hot burning ears right before a migraine hits, which is quite often.

Does anyone else get chest pain? I didn't think it was related, feels like horrible heartburn...

do u know what is causing your syrinx and where is it ? Cause when you said shoulder blades wow that's where my syrinx is and right between them is where is hurts so bad at times....but find out what caused your syrinx .. Roz