[JillSmith]

I have had spinal injury pain for 27 years and l can normally manage it just because it eases when l sit, can stand for a few minutes only.
But today the falling down l have, got to me. No one has seen me fall till today when a neighbour was round and for the first time it had me in tears. Also cross as l can manage a lot if l think of a different way to do things.
I use a power chair outside and take a collection of tablets. Eighteen months ago l told the Dr about this falling down for no reason and he just nodded his head, this was ok as l was expecting to go for tests which knock me completly of my feet for weeks but since its got worse and also my arms and foot shoot out in a spasm. Have had to stop having hot drinks as l burn myself. Then RSD came to join me and cause more pain.
Now my Dr has left the surgery and gone back to Scotland so don't know who to see as theres 3, feel like asking whois the best. l don't want to go at all. I was going to have two years ago
a pole attached to my spine but then decided not to as a few from my Docters were completly of feet after it. The docter just said my back was bad and 4 discs were like clapped out balloons (his words ) Not many people know l am getting wors,. as l hide it,even from my son.
But after falling in twice front of someone today l need to know why ? l can't see me walking for long.
This is first place l have joined but just put out a search and it came up.
Anyone got some answer's for me please.

[qbounce]

Hi Jill, and welcome to the forum. Sorry your going through such a terrible time right now. If you don't mind explaining, what is RSD?

[Scribbler]

Hi Jill. I can certainly understand your worries, but you don't have to go through this alone.
Although I don't have an answer for you, I can be certain someone on here will.

You will benefit greatly from joining this site, so don't give up hope; people here will help and support you.

Welcome and good luck.

Scrib's

This post has been edited by Scribbler: 19 May 2010 - 07:15 PM

[allister]

Scribbler, on May 19 2010, 08:14 PM, said:

Hi Jill. I can certainly understand your worries, but you don't have to go through this alone.
Although I don't have an answer for you, I can be certain someone on here will.

You will benefit greatly from joining this site, so don't give up hope; people here will help and support you.

Welcome and good luck.

Scrib's

hi jill

scrib's warm and caring words says it all. welcome.
may I add, if you could take a little time to fill in the profile details, especiallly your location, then is makes it easier for others to identify with you, and hopefully give you more direct help and guidance with regards to your condition.
best wishes
Al

This post has been edited by allister: 19 May 2010 - 10:30 PM

[greybeard]

Hello JillSmith.
Welcome to the forum. You really should discuss this with a medical professional. If you continue to leave your collapsed discs untreated, you are likely to be storing up even more problems for yourself.

Are your medications helping with the RSD pain? If not, could your GP refer you to a pain specialist?

Why are you hiding your worsening symptoms from your friends and family?

This post has been edited by greybeard: 19 May 2010 - 10:54 PM

[tyvin]

I know what RSD is. RSD came to the spotlight lately as Paula Abdul found out she had it after suffering 25 years with severe chronic pain. Anyone who doesn't know what it is please google it as it is a complicated and brutal diagnosis that is usually caused by multiple diseases. RSD stands for Reflex Sympathetic Dystrophy.

Emotional distress can cause symptoms to worsen. You are keeping too much bottled up inside. Your family/friends deserves to know what you're going through so that they may help. I know you think you're somehow sparing them by not letting them know your pain and distress but think if one of them was going through the same thing and didn't tell you. Wouldn't you want to help?

You probably have had it for some time. The docs should be more willing to educate you on questions you ask. The falling is due in part to the RSD absolutely as the joints become infected and weaken.

I am so glad you found this site as the people here are caring and want to help others. We are all in this together so please vent on this site to release some of that anxiety that goes along with having RSD. I bet there is a support group somewhere on the internet specifically for RSD; I will keep my eyes open. Nothing wrong with belonging to multiple sites. As far as experienced advice on everything and anything with people in wheelchairs this is the place.

Later,

[Lucky]

My neck was fixed in Mexico. Basically, they took bone from my hip and placed it at the back of my throat.
X-Rays now reveal 3 vertabrae have fused together making it look messy but strong.
I found this to be true Friday night when I hit another car at 50mph.
Everyone apart from..... you guess it..... Me hurt their back or neck. Wether this is for a claim or true, it gives me confidence in my spine..... especially at the break site!

[pinkcloud]

Hi Jill

your story bought a tear to my eye. Find the best surgeons that you can.

I cant stand still for more than a few minutes, sitting upright - forget it unless got proper back support and going of my legs - yeap happens to me.

I had thoracic intercostal discectomy for giant t7/8 disc prolapse.

I had this trouble for 2 years - real bad, undiagnosed by GP. I too hid it from the outside world and my sons but in the last 6 months. No way could I.

I contacted the brain and spine foundation who helped me so much its unreal and they still do. Google them maybe? Neurological nurses answer the calls. SCI's version of cancer helplines in my opinion.

Keep us posted. You cant hide it away if its here to stay. Best wishes