Dear Roz

Thankyou for that - it really gives me some hope!

How long have you had this?

This is just so hard to cope with some days - you just feel like you can't cope with the pain or the disability anymore - I keep thinking I'm only 21 - I should be able to do what my friends are doing and instead I'm either stuck in bed (like at the moment - but admittedly it is 1am - but all ymy mates are dancing in the snow and I am very jealous) or in a stupid wheelchair and need a carer for everything from wiping my bum to feeding me).

But hey - knowing that other people get over this is encouraging!

Love

Rosie xxxxxxx

Hi Rosie,
A little over 5 years ago I had a fall in my kitchen. It wasn't a light fall but it wasn't that hard of one either. My shoulder started swelling, so off to the Docs I went.

I was put in Physical Therapy. But I just kept getting worse. I was told by one of my Doc's I was just overdoing things and the arm needed to rest. The first 22 months I was DX with a torn rototor cuff with pinched nerves running down my arm. My arm was purple at this time.

I went to a Ortho. MD who told me I had RSD, and seriously ran out of the room. My husband chased him down the hallway to find out what RSD was. I also went to 2 Neuro's because I wanted to be sure this is what I had. Who confirmed the Ortho's DX.

Thru out this whole time I was going from very rough shape to worse. The pain was so bad I felt like I could't breath. I had complete pulmonary testing my oxygen levels went down to 77, when they should be in the 90's I was put on high dose steriods for 3 months. The first month it seemed to help some. But I ended up being bedridden on high dose predisone. cont.

I started getting so weak. I was very light headed and felt like I had been hit by a ton of bricks. I could no longer get drinks, cook, drive, or take showers by myself. I could't even sit up.

I also need to back up a bit and let you know I was on several IV's with antibiotic and pain meds. The pain med list could go on and on. I had broken ever glass, several plates, and to many other things to mention while trying to to do the best I could to remain as independent as possiable. While feeling so much pain, electric like shocks, severe muscle spams and very very weak.

My reg. MD at the time spoke to my husband about a wheelchair, but he got so upset even hearing the word disabled. I just let it go because at this time I was to weak to sit on anything anyway. I lived in my bedroom for close to a years time. Food and drinks were brought to me on paper plates and plastic cups. I split several drinks in my bed and all over the carpet. The plates of food would drop as well. The carpeting was only 3 years old but had to be replaced.

Hi Roz,

Great news! I'm so happy for you!

Are you saying that you definitely DO have RSD problems with your heart & lungs? If so, how does it affect you?

I'm asking because I've also had a few problems, definitely with my lungs. I haave no insurance, so I've been trying to figure out on my own what's causing it. I have trouble breathing, & it feels like a tight squeeze on my chest at times. And, sometimes it feels like my lungs "burn". I have RSD II in RT arm/hand/shoulder, that spread to my left arm, etc. I also hurt & burn in both arm pits when it's flared, and the burning & painful tingling goes "across" my chest. (That's the best I can explain it)

Since my injury is Work Comp, whenm I try to ask about other areas, they just kind of say "We're only authorized to talk about your arms".

Thanks for any info. I'm also going to buy the herbs (after asking my doc whenever I get to see him again).

Denise

Part 3

I am not much over the 2 year mark at this time.

I was just deteriotating from the 3 month course of steroids. My husband took me out of the States for treatment to Mexico. I was given again IV antibiotics again, DMSO IV 2 or 3x aweek, and daily IV Vitamins. I have always had a weak immune system so I really think the vitamins helped some to get some strength.

I also had people move furntiture around so I could at least give it a go to get out of bed. I had them placed like rails to hold on to. Because before I was bedridden I would fall alot. I would get very frustrated. I also would do mild stretches in bed. I have a very stubburn spirit which probally helped some. But I was finally able to do a little bit.

I joined Braintalk/1

Then about the 3 year mark I had a test called a Neurography and was told I had Severe nerve damage, with my Subclavicle artery compressed and vein involvement. This was in my right Brachial Plexus only. I decided to get 2 more opinions. They were in agreement of surgery as well.

Meanwhile with the exception of my right arm and a little other stuff I felt better than I did prior. I was able to at least walk some. Also the outcomes of this surgery if you are familiar with the TOS site do not have the best stats.

I decided to buy a small single story cabin in Dec. 2005. In April 06 my arm had swelled so much it felt like it weighed a 100 pounds. I had no circulation going in it at all and was ready to loose it. I had plastic surgery on the perineal nerves and my subclavicle artery released. I was told since I waited so long I had a 4 year recover so I am still recovering. My C-fiber nerves are probally still affected. cont.

wow Roz

it sounds like you have been through an awful lot! you have done brilliantly to recover this well! (and to be continuing to improve). Like I said eariler your case does give me hope that this will improve! So did your RSD spread full body? Like you - I have had the pulmonary thing - I maanged to really scare the docs with my blood oxygen level and blood pressure.

Before I got this bad I had broken large amounts of my mums plates, mugs and glasses, and before the addition of cot sides to my bed I fell out most nights... so I do understand the frustratingness of the weakness!!!

I really hope you continue to improve and am really interested to hear the rest of your story

Love

Rosie xxxxxx

Hi Again,
I am getting better. I can walk alot, not a whole lot at one time. I go up and down the stairs. Cook and clean some. Go shopping. Fix my hair. Put make up on, I could go on and on with what I can do now. Everything I used to take for granted. I am not what I should but alot better than what I was.

I used to enjoy painting, things like flowers and landscapes mostly. I never could do beautiful work like Artist. But I think if I get cracking on it, it would help being able to do some detail work with my right limb.

I just want you to know and everyone else. If you are in really bad shape it can get better. Big Huge Hugs and Love, Roz

Aw shucks, Roz....(blushes)... - thanks!
atb

Hi Denise,
The day before RSD hit me I ran about 2 miles in the evening.

About 18 months into RSD I started having lung and heart problems. I wasn't ever told directly it was related. But in the back of my mind I question that. The Docs would just tell me I was in very rough shape.

This is gross, but when I would take a shower I would try to cough up any toxic mucas, and flem in my body.

I believe the lungs and heart work together. You need to be seened by a Doc right away if you are having heart or lung problems.

You might ask W/C if any type of injury can effect your heart.

Big Hugs, Roz