Reflex Sympathetic Dystrophy Support Group

Hi everyone and greetings from Australia. I'm new here, though certainly not new to CRPS. I'm 27 and my journey began nearly 13 years ago when I injured my right knee and needed surgery. We know with hindsight that I had CRPS affecting my knee from then onwards, but it was never diagnosed

Six years later I injured my knee again and needed more surgery. This saw me get the CRPS diagnosis, but only after it spread through the rest of my right leg. In the last few years, it's spread through the rest of my body - now in all four limbs, back, stomach (internal), flares in my face.

I have SCS, intrathecal baclofen pump to manage severe dystonia. I've tried ketamine multiple times, tried most meds - a lot I can't tolerate.

I've also got osteoporosis - I'm mostly wheelchair reliant, but fainting as I transfer due to orthostatic hypotension has left me with multiple vertebral fractures. I'm in a bigger mess at the moment thanks to an infected, non-healing ulcer on my leg, and strange skin problems on both feet.

That's my story in brief - look forward to getting to know you all and share what knowledge I've amassed over my years with this and my years of study (I don't work, but I qualified as a vet).

Laura

Welcome to our group Vicgirl. Sorry you have and are suffering so much.Please feel free to read our past topics and emails. Lots of information available.

You have been through a lot. Have had better success at some of the treatments than I have. I too have RSD/CRPS in all four limbs, back, some internal organs, COPD, diabetes, osteoporosis, congestive heart disease and degenerative disc. Others too much to mention. I too am helped in mobility by a power wheelchair. My main help is my servicedog, Levi. I use mainly mind-body pain techniques because the pain meds are no longer effective and are too hard on the rest of me (what's left of me.) But I have my cooking, painting, dog training (good thing for treat-training as my furfriends are all stronger than I am now).

Sending you a big hug and prayers that today will find your pain lower than yesterday and you will rest well tonight.

Rev.

welcome you are here among friends and people who understand what you are going through. I am sorry you have to be here under those conditions but this site has really helped me.

feel free to ask any questions.

Hi Laura,

Welcome to a great group with very supportive people! It breaks my heart that you've gone through so much and have suffered so much. You're the same age as my daughter and I can't imagine it at your age. I'm really sorry to hear it.

You have tried everything I've heard of... what happened with the ketamine? Did you get inpatient infusions or what did you do? I know that some people get such great results with it and some don't at all. It's as strange as everything else about this. Do you get out? I'm not in a wheelchair, but it's very hard to walk much at all so I don't get out much. The pain gets worse with each step or with standing, so there's not much to do.

How cool that you live in Australia! Is it pretty where you live? That's one place I never traveled to that I really would have loved to see. The zoo here just got 2 koala bears and I really wish I could go see them, but I don't see how it will happen. They were on the news and so very cute.

You might enjoy some of the past topics, so check them out if you want, and I hope to know you more in the future. I'm sending a hug and wish there was a better way to encourage you. Take care!

gail

Thanks all

Gail - yes, it's the low-dose inpatient ketamine infusions I've had. They've been awfully problematic for me because I have very little tolerance for it.

My first infusion was stopped very quickly - I now have problems with bradycardia (resting HR is usually around 40bpm) but used to be tachy. As soon as the ket hit my system, my HR shot up to around 180 bpm, I couldn't breathe

All of them I get hot and sick, and my last one I was extremely dysphoric as well .

We're going to give it one more go in a few weeks' time - at a much lower dose

Laura,

That sounds so awful and scary! I've read that it's a pretty strange experience, but you really had serious problems. Good luck with the next try... maybe the lower dose will be better for you. I hope so! Thanks for letting us know what your experience was like.

Take care!

gail

Hi Laura, I have had RSD for 10 years and like you it is pretty much everywhere but the lower part of my left leg. I also have it in my stomach and when the spasms start it makes it very hard to eat. My RSD started when I had severe pain in the neck and was loosing control of my left arm. After a bunch of MRIs they found 5 herniated discs 3 in my neck and 2 in my thorarsic area (which they can not do surgery on that area) I did have surgery on my neck but after surgery I turned my neck ever so slightly (2 months after surgery) and heard a loud popping noise. Well every since then I have had RSD but it took them 4 years to figure that out. Like you I also have arthritis badly and it runs in my family for osteoarthristis. So does colon cancer, my older brother already died from it but they caught my father's in time. (not that that has anything to do with RSD) All my problems started when I was 38 and now I am 50. It just breaks my heart when someone like you who is so young has to put up with this painful disease. Nobody should but you have yet to live your life. I will be praying for you as I know what you are going through.

Let us know about what happens with the ketamine. We have all been waiting for a peson who has gone through it. I talked to my doctor about it but he wants to wait and see more results 1st. I might be starting memanetine soon. Unfortunately I can not have a pain pump because it would have to be put at level C2 and that is too close to the brainstem.

Good luck and will be praying for you!!

Cindy61

Hi Cindy, and thanks for the welcome I've actually been through the ketamine four times already - so I'll start a new thread on it.

Laura

Has it helped at all? and by the way most of us are house bound even tho I don't have a wheelchair yet. I can't walk more then a few minutes and then the pain flares up. So you will see we all joke around when we finally go to Walgreens (drug store) and that is are big adventure for the week.

Cindy