Reflex Sympathetic Dystrophy (RSD)

[AnnieLeeLee]

Hi all, I wanted to reply to the post from 'flustered' but I couldnt' get the forums to work--kept being chucked out to sign in, then back to the generic page, and not given option to post a reply. So I'm trying to post a new message. But really, I wanted to tell 'flustered' that maybe what you have is RSD maybe what you have is CPS--I don't know much about the latter. But I will be curious about whether the treatment is different. Because if not, then maybe it doesn't matter as much for now what it is called, but if the treatment is differnt, then it is very important.
What does the neuroliogist say about why it isn't RSD in his view?
I'd ask.

By the way, someone wrote about how having RSD means that most people don't go back to work, but that's not been my experience. Some people can't go back to work, but a lot of people do get better, or get enough control of pain symptoms that they can go back to work, even if sometimes not in their original work or their original capacity physically.

I work. I know someone who is a pilot and works. Another who is a miner. Another who is a teacher. Another who is a psychologist Another who is tax preparer. Another who works in textiles. And they all have RSD So don't get discouraged. There's always hope, and there are many creative ways to get back to work. Maybe not for all, but many do.

Also, about the rsdchat.org website--it is a cool chat site. I met quite a few people there, and the registration in minimal. It is open all the time, though there aren't always people there--so if you come and there's no one, I recommend leaving that window open and going about your browsing--someone might come in a moment later. IT used to be a lot more active, and hopefully it will be come active again. We're working on it.

Take good care, and more about me another time,
Annie

[G0J0G0]

Hi AnnieLeeLee,
Well said, I think I am the one that mentioned the possibility of not returning bak to work. The variables are too vast to make such a large leap to conclusions that are not necssarily so... It all depends on the location of the disease, how severe the case, and how far it has progressed. I have seen a few return and know all well of the possibilities, but there are those that can't make this a reality. The HR director of our company informed me of the possibility and promises a job when and if. But as their nurse and the doctors that have managed my case have told me, don't lose hope but in the same breath don't count on it either... I will say to anyone listening that possibility always exists and the hope should never leave your thought process'. I place my hope in a healing touch and always look to the Author and Finisher of life it self for the strength to carry on. Thank you for the reply that reminded me to keep this in perspective, Blessings, gojogo...

[AnnieLeeLee]

hi gojogo,
well, I'm glad if my post helped. I'm not trying in any way to minimizethe impact RSD can have and often has on people's lives. I guess what I find helpful for me, and was trying to pass on, is to remind myself--and others--that RSD spans a huge range of severity and presentation, and there are many who live with it and manage fully productive (if somewhat pained) life. There are more and more now who get treatments that are successful (ketamine, spine cord stimulator, nerve blocks for some, medication combinations for others) and that allow them to resume function. So I am hopeful. And I think keeping hope is a good thing. That is not the same as ignoring the reality or denying that RSD can be awful; only at the same time holding the reality that many do recover, that many others find relief, and many of both groups lead satisfactorily productive lives.

Yes, hope always helps...
Annie

[G0J0G0]

Yeah most of the treatment options I have had tried on me. There are a few that are more harmful than good. Ketamine is still experimental and ins. won't cover, spinal cord stimulators (SCS) are effective about 30-40% of the time and my doc feels it isn't worth the risk at this time and some of the blocks actually make things worse; ie radio frequency ablation. The medical nerve block offers minimal and very temporary relief, leaving me with medicinal treatments... So you can see why won can get frustrated and forget to be optimistic at times. Thank you for your encouraginf words and I hope beyond hope that you continue to find relief and His blessings show you much favor. Be blessed, gojogo

[AnnieLeeLee]

hi gojogo,
I'm sorry you are feeling so frustrated, and I can certainly understand it. Unfortunately there isn't yet a treatment for RSD that works for everyone, and the treatments that are available, are only effective some of the time for some of the people, and with a range of effectiveness.
It is ok to feel frustrated, and that's a forum where we can share that with other people who understand. Personally many of the options aren't available to me, due to other medical complications I have, but medications (Tramadol and Morphine, in the past Mobic--but I had another ulcer and had to stop that, and Neurontin, which was a little helpful for a while but I had to stop taking it for a medication combination issue) help a little. Not much, but they take a tiny edge of, and I guess it is better than nothing. I also try to use relaxation and breathing and distracting when I can, and just keeping myself calm when I can't.
Hopefully more information about RSD will be found in the coming (near, hopefully) future and there'd be a cure. I truly believe that.
In the meanwhile, whatever give your some relief--prayer, family, reading, music, breathing, meditation--is a good thing.
Take heart
Annie