Is there any one with this who has nerve problems?

I'm somewhat hyper-mobile, and have some chronic RSI/TOS issues related to it, due to prior repetitive jobs.

You mix hyper-mobility with jobs or hobbies that include - speed, repetitions, long hours and even holding of static postures and you can end up with problems.

What kind of symptoms are you having?

I have been diagnosed with Ganglioneuritis, which is an autoimmune peripheral neuropathy thingy (so sorry i'm in a flare-up and not thinking well right now). Before I was so-called conclusivly diagnosed I briefly saw a Rhuemitologist who diagnosed me with Joint hypermobility syndrome. I never followed up with her as my trail lead to a neurolist and the current diagnosis. But this forum has got me thinking that maybe this hyperflexibility has more of a role than previously thought.

I have severe pain in my arms to the point that I spend 90% of my time on a couch. I have all the typical nerve pain syptoms from mild aching and itchy feeling to the crushing and ice pick in the bone feelings. This stems from inflammation to the dorsal root ganglion in my c-spine, suspected around c-6 or c-7.

What has been thought is that the inflammation stemmed from an immune over-reaction to a couple viruses I had. But I have been thinking that at the very least my hypermobile joints will be contributing to the inflamation. I can't exercise much. I havent really looked up much about the syndrome because it didn't seem pertinant at the time - but who knows.

I have not exercised in two years. I have barely been off the couch. This worries me about the loosening tendons thing.

Does hypermobility and nerve inflammation go together?
What is RSI/TOS?
WHat is done for the syndrome, the rhuem I saw indicated nothing was to be done - But I grind, snap,crackle and pop a few hundred times a day and my hips hurt and pop (in/out?)all the time.
Could there be repercussions to this syndrome? serious? I don't have a reptative job - I am a stay at home mom. But sitting kills neck and hips. Especially when I sit at my computer I jut (is this even a word?) my neck out and forward and it just wrecks my neck. I have not sat at my computer but maybe 2 times , with the exception of the past week, in the last year. For that last week, since I discovered this forum, I have been here everyday multiple times!

"What is RSI/TOS?"
sorry - was in a hurry

RSI = repetitive strain injury
TOS = thoracic outlet syndrome (a condition that can have nerve or vascular symptoms affecting the upper body - hands, arms, shoulder, neck, upper back etc.)


"Does hypermobility and nerve inflammation go together?"

I think it can, a PT told me this
" If hyper mobile the muscles will need to work harder to hold the joints in alignment and even more during use and more +++ with repetitive use"

When the muscles become lax there is even more joint movement and less stability.

All the extra free play of the joints can entrap or just irritate the nerves.


If nothing else pay very close attention to correct postures ,perhaps something like Alexander technique might be helpful.
Good postural alignment should hep to de stress the joints.

I'm slightly into alternative therapies - like- acupuncture, homeopathy/naturopathy

Have you had a MRI of the c spine & hips?

Thanks - where can I find information about this Alexander technique ?

I know my posture is terrible when i sit at my computer - need a way to get my screen closer

I tried accupture but the positive effect only lasted for the day I had it

Just had an MRI of the c spine a few weeks ago and I start with a pain management dr. on monday. I also had mri's when this condition 1st came up two yrs ago - the dr's never saw anything drastic from it.
I would like to compare it to the one I had a couple of weeks ago!

How does your condition affect you?

Mystery Diagnosis program had a segment on this disorder.

You can view it here on video:
http://www.ehlersdanlosnetwork.org/m...diagnosis.html

This may help clarify it for you.

There are books and videos in the libraries and you can find info online too.
watching some of the videos a few times makes it easier to understand.

I tend to go out of alignment fairly easily - either from a off balance step or jump, or if I get muscle spasms or even really tight muscles - those will pull on the spine, not serious but just enough to cause discomfort.
If I pay attention to my posture and activities I do OK.

I have this problem but more chronic ( i cant even walk any more even with an assistive device )

You really have to train your proprioceptive abilties to be able to catch it , and readjust things yourself to the point its almost spontanous .

I also suffered a loss of tactile , soft touch sensation , that I became my navigating point for how to recorrect myself ( the more good , positive sensations I felt ) the better I was able to recorrect my joints .

You will probably need to look into Prolotherapy too too help stabilise things .

I find in my case ( I suffered this 20 yrs now ) that anything that counter fatigues usually helps. ( I use Beta Alanin Extreme and Cissus from USP labs too do this.)

vascontriction / vasodilation also seems to play some significant role in influencing things even by taking some as simple as table salt I can find improvements .

Aside from icing or using some gel that has similar effect I also use Ultrasound device .

Avoid steroids at all costs , or anything that works as muscle relaxtant , your muscles need to be firing at a certain level almost constantly and in varying patterns to adapt and deal with this.

Mental stamina and conenctration and visualisation is what beats this - not muscle power , reps.

This is far to fragile to usually handle anything like that.

melon

Well, well... joint hypermobility syndrome --there's a name for it? I have never heard of anyone like this besides myself. I was a super flexible kid and that was great. Before age and some old injuries caught up with me, that is. I was once in the ER with the usual sprained ankle and the Doc, who later did surgery on my ankle, was showing another Doc how he could rotate my ankle all around. I was so afraid he would dislocate it. My ankles are treated with the utmost care. Don't make them show off, or it could be a disaster, as well as very painful!
Really, Ive have to support and watch out for them. Danger!

T quote you,"Mental stamina and concentration and visualisation is what beats this - not muscle power , reps." I know these are good ideas. A big problem is that I try to do everything fast. DH is trying to help me remember to slow down. I am starting to listen and not just be insulted.

So anyway, I'm like a marionette, whose strings are loose.

I'm going to follow up on this and maybe learn something. You have real problems and a lot of them, poor dear. God bless you in your struggles. Linda

I do! But I think that my nerve probs are unrelated. They are so far undiagnosed. The HJS has made it easier for me to tear ligaments personally - therefore two knee surgeries over ten years ago and several torn ligaments here and there treated with PT.

As for nerves, I have a crazy awful electric-shock like pain that hasn't been diagnosed yet (over three years of searching) which could be MS or even something called Central Pain Syndrome.

Anything in particular you're concerned about?