I have a question re: EDS nerve pain.

I first had problems with this following a hyperexension of my right wrist in a headstand. I developed pain, had difficulty bending the joint...on and off since the injury. It was seven years ago. My doctors never found anything wrong with the wrist...a nurse told me a year ago it looked a little swollen and my right hand becomes cold quicker than my left unaffected fully hypermobile arm. I injured it again while typing over the summer...the pain was horrible and my hand ortho did xrays and said they were fine...and gave me a brace. The nerve pain has not let up and my wrist gets sensitive to the touch.

I dislocated my knee over a year ago...the nerve was pinched. The pain continues on down my leg...and then I injured the ankle on the same leg. It began having the pain too.

A prickling, tingling, BURNING pain...and I feel like my knee should be hot...but it's cold.

So I began PT...and i got numbness and tingling in my hands and feet...and severe muscle spasms...that have not stopped. I became sensitive to touch and have skin pain even from my clothes. I have extreme difficulty relaxing my muscles. My Dysautonomia also worsened with the PT and despite having a good BP am still symptomatic with temp swings, GI stuff, sleep props and palpitations etc.

Being braced helps, heat helps the pain...but what kills is cold sometimes stress will make the pain worse...as does the Dysautonomia. Despite five pain meds...one being a narc and another being an almost-narc...shouldn't I be in much less pain than I am??????

I was diagnosed with somatoform disorder in October...my pain management doctor does not believe the diagnosis nor does my current psych nor does my family, nor my friends...I'm not sure.

I am told I am in more pain than I should be...especially given my meds. What gives? I was Dxed with fibro before my EDS diagnosis but can the nerve pain be so bad it wakes you up???? And why don't my other joints have it too?

any insight?

Nerve pain is often present in EDS due to nerve compression, nerve damage or for no clear reason at all. I think we all have some nerve pain to deal with.

As for all the other symptoms that's accompanying the pain - electrolyte imbalances come to mind again since it would account for just about everything you've mentioned. And it's a common imbalance with dysaut that's fixable with a few supplements.

d- I keep being v impressed by your v 'professional' answers!!!
top woman!!!
xxg

My knee pain's been traced to a specific nerve...and I've already been told I have neuropathy and periferal nerve injury.

Re Dysaut: I have both EDS induced POTS and Autoimmune Generalized Dysautonomia. Drat that immune system of mine! My cardio said since my BP is alright I should have the other symptoms lessening. My neuro doesn't know a lot about ANS stuff but told me that I can still be symptomatic due to other ANS functions. They both have mentioned an inner ear disturbance or a neck problem as I did something weird on exam...I rested my head in my neuro's hand and began turning red, sweating and telling him to let me up because it hurt that bad. I couldn't finish my cervical MRI.

I already have taken supplements...no difference there...and my electrolyte levels are all normal...been tested in the ER.

So I'm guessing it's more from my EDS spinal involvement and then those three individual injuries that damaged nerves.

And also the EDS specialist I'm seeing will probably have some insight.

I wanted to know if other people with EDS have this problem. It's been much worse since I was in PT (it was the wrong PT)

It sounds like RSD pain http://www.rsds.org/index2.html. What happens is sometimes a nerve injury or injury to a specific limb can spread into a type of infection of the nerve roots and amplify your pain. I know someone very well that has it and she has many similar symptoms as well as EDS. Maybe people with EDS are more prone to it. It seems to be less of a genic factor but more of autoimmune. I don't know a ton about it other than what's on the net but i could always ask my PT for you. He has several patients and he has said that it can progress if you can't lik cut it off right away with treatment. Usually the nerve roots get infected and cause changes in skin color and temp. What happens to is there is overall damage to your peripheral nervous system and autonomic system which in tun causes the pain to amplyify. So it sounds like your body is just working overtime and needs rest or could end up with some major damage. PT might be really hard to do but it may still be helpful, you should probly work on getting the pain under control maybe first, which i know is tough.

I'm not a doctor but i've been hearing more and more people with this problem so have been kinda researching it. I think having fibro and dysautonmina for us is double whamy to our nervous system so it is prone to these type of infections and disorders.

Hang in there!!! Anymore questions you can PM me or IM me lealife4.
Sorry to hear you are so flared up, esp. with not sleeping, i am going through tat right now. I got so stressed that i had to again drop my classes and take the semster off just so my body can rest. It scks to do that but i felt a weight off my shoulders. I hope you get on your way to feeling better sometime soon and that these vicous cycles eventually can end for us all.
-Naomi

p.s. I remember someone on dynakids that has the beginnings of RSD and is spending christmas in Johns Hopkins PT program. If you are already headed there for the genetics doc maybe they could find someone you can see there because you shouldn't have to live with so much pain!

Here's what happened...

I injured the nerve in my knee from a dislocation. I went to PT because the ortho I saw thought i was nuts. Well the PT was the wrong PT for someone with EDS...while my muscles got stronger...the pain got worse. My joints subluxated more...and here's the part my PT could not figure out.

I began to get the pain/sensation in other areas...my shoulders...my hands and feet would tingle and I'd go into such spasms that I'd be screaming...and my PT knows I DON'T CRY IN PUBLIC. Ever. He wanted me tested for MS which came back negative.

My neuro thought I was somatizing...but he then realized I wasn't. My legs get blotchy and mottled...and nurses especially are shocked by the color changes my limbs have...rapidly turning purple and red. My feet...are white. (I have full body incomplete Raynaud's)

I was just writing in another thread how I forgot to take my Neurontin one night and I woke up six hours later wanting to chop my leg off and that i couldn't use my blanket...and then had to take Ultram and change my patch in addition to taking my morning dose...and it was two hours before I could sleep again.

I don't know how to approach this with my neuro...he knows I have a lot of medical knowledge but I want to respect him you know...because he's really nice and he's done a lot for me.

And yeah...the nerve crap makes my ANS problems much worse...and who the hell has Essential Tremor at 19?????????

Yea i understand what your saying. Its tough tough situaiton to figure out, obviously it sounds to me like your not crazy your just dealing with your body being really unhappy and nuts. I wish i had some advice that could help you out how to talk to docs, but unfort. i'm having my trouble over here even getting in with a rheum. because of communication issues and my own GP doc doesn't seem to remember me telling her of my new diganosis of EDS nor did she read the **** paperwork proving it and so she stil thinks i have fibro. It tough with these docs because you have to go to so many. I am already headed down the genetist road just to get confirmation and real proof and documentation plus looking for a pain management prob. so even though i'm not where you are in severity I def. feel your frustration.
I would just try and really sit down and think about what you want to say to the doc even ifyou don't know if it will come out right. Its prob. hard to think in pain. Do you think its neurological? Is it possible you are suffering from some kinda of hidden infection? I know that when I am in severe pain i am usually fighting something. MAyb think about what in order you think needs to be dealt with first. Dont worry about insulting your doc, i mean let him draw some of his own conclusions cuz i mean you souldn't have to try and figure it out yourself but is what we end up doing. Just try your best to relax about it and maybe you can put your heads together and figure something out.

Hey not to be pushy but i looked it up again and your symptoms do sound very similar to RSD pain. It is you to decide but neuro's should know about it. here is a neruological link, just bypass all the other diseases and go to the RSD link: http://www.neuro.wustl.edu/NEUROMUSCULA ... n.html#rsd

It talks about cold skin and buring tingling like you were talking about, just like my friend, it might not be all Reynaulds Phenom. My friend had the injury (nerve injury) in her knee like urs and it spreads from there.

just trying to help you out some.


later,
naomi

He's really cool about talking about stuff to me...I don't have any hesitiation in explaining my symptoms to him...as he knows I'm sensitive to touch...when the did the sensory exam some parts felt painful on one side...but not on the other. The report that was transcribed was inaccurate...and I am okay addressing it to him as I have done that before.

I found a study...it's on EDNF. Four patients went to a pain clinic...for severe burning pain etc and were diagnosed with CRPS. But the doc noticed they all were quite hypermobile and some had interesting scars. So he referred them all to a geneticist and ALL FOUR had EDS...two HEDS and two CEDS.

They are trying to investigate the interesting link between CRPS and EDS.

Re: infection...I don't have one. I was told I should go to an ID specialist but my mom went for similar issues a year ago and the doc couldn't find anything...she even tested my mom for weird things that Americans don't usually get. She tested Mom for immunodeficiencies...NOTHING.

But her clothes don't hurt her. She can go to the store and get shoes. If I touch her surgery spots rough she gets mad because that hurts her...but she's not the one in the ER asking to keep the sheet because it's so soft (they let me btw)

So neurodude and I are going to talk...he knows I have weird diseases that he's never seen or heard of before...and my geneticist told me rare things come in packages. He'll probably do an EEG anyway (OWWWW)

It's funny though...my doctors ask ME for advice....they know I'm the EDS walking encyclopedia. Not to mention my new geneticist (Dr. Francomano) conducts most of these studies.

We may never find out...but my docs tell me I'm sane as can be...and so does my psych.

Hmmm I wonder if people like us with EDS are just more prone to stuff like CRPS or other pain disorders like we are prone to other dysfuctions; autonomic, autoimmune etc.

The report listed several reasons for this...one being the possibility of fragile nerve tissues. Many people w/EDS also have small fiber neuropathy. Not to mention we're forever dislocating joints and irritating nerves...

I know now of THREE people who have the EDS/RSD combo. You and two people on myspace.

I am sure we'll be hearing of more and more people with both. I saw some stuff on the net about what you were talking about-some articles i couldn't get access to. Do you know if that report is online? I'd like to show it to my PT sometime.

yes...i'll post it right below:

http://www.sciencedirect.com/science?_o ... 69d3c7e444

hope it works...worked on mine. sorry right hand is braced...wrist is acting up.

Hugs!