[CRPS Warrior]

I was diagnosed almost 3 years ago. I was just wondering if anyone here has it. If not, then is anyone wanting to learn about it??

My husband has had RSD since 1985.

I've had this from 2009 till 2012. It ended in a leg amputation because it became life threatening.

[CRPS Warrior]

I'm sorry both of you know this monster. Breadfish, I am so sorry that you had to go through that. They are afraid that mine is going that way...

I'm sorry it had to be necessary, but I've never been sorry 'I' made the decision. ('' because the doctor threatened to declare me unfit to make my own decisions if I didn't agree to the amputation.. and threatened to have my parents (I was 15 at the time) declared unfit guardians if they disagreed. So it wasn't much of a decision 'I' made) 10 days after the amputation I 'really' walked for the first time in 2,5 years. The phantom pain is not even a fraction of the pain I experienced while I still had my leg.

It's really silly.. because my leg couldn't handle touch, when I lay in bed my leg was always outside the bed. So it hung next to the bed. When I woke up in the hospital after the amputation I was ecstatic that I could raise the railings of the hospital bed. That my leg wasn't 'in the way' anymore.

That's just one (silly) example of the relief the amputation brought.
It's not about the railings - it's about being able to act normal again.

When I still had my leg I averaged 11 hospital visits and therapies a week. (And I was trying to attend school whenever I had the time - yeah, it was insane) Not counting emergency hospital visits because I showed signs of sepsis (those visits averaged 2 per 3 weeks). I didn't have a life.

[CRPS Warrior]

Oh wow...you are so strong. I'm trying to relearn how to walk. It has been 3 years and almost 5 months. I have an Spinal Cor Stimulater, but now the battery is acting up. I hope they will fix it next month...

A spinal cord stimulator, is that like a TENS thingy?

You have to wait a month before they fix it? Stupid asses.. you can't just go a month without pain relief!

[CRPS Warrior]

Kind of...but it is surgically inplanted in your back. It still kind of works, it just feels like it shuts off every now and then. Yeah it sucks that I have to wait so long...

Well, that sucks. People just don't understand how maddening pain is/can be.

[CRPS Warrior]

No they don't...thanks for the hugs...

My husband has kind of been on the cutting edge of treatment through this 30 year ordeal; unfortunately, that meant that mistakes were made in his treatment along the way. He had a sympathectomy way back in 1986 that didn't do anything. He's had all the spinal blocks, etc. He's been through a number of spinal cord stimulators; his current one didn't last long -- he needs the settings up so high that it just eats battery life. Apparently now they do have rechargeable stimulators now so he might consider it again down the road.

Probably the biggest help in his treatment was the implantation of an internal morphine pump about 15 years ago. It does reduce his pain quite a bit, and he doesn't have to take oral pain meds that created all sorts of other issues. He's just had this for so long that the disease has progressed so far that not much more can be done at this point. His bone has deteriorated so he is almost always walking on multiple stress fractures, but of course, they can't cast him because that causes severe atrophy.

[CRPS Warrior]

Oh wow. I have a spinal cord stimulator with rechargable battery...and I love it. However it is acting up right now...but I'm hoping for a quick fix...