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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi nichole!:wave:


Welcome to the boards. I newly Diagnosed as well. Its been a little over a month that I found out I have it in my knee. Yes it is very painful.I truly hope you have a compassionate doc and that he or she takes care of your pain. As far as muscle atrophy goes, I have it and it seems to be gettign worse as the weeks go by, no matter how hard i try.

Just keep fighting and hopefully they caught it in its early stages and are able to possibly put it in remission. I too, take a whole host of meds some similar to yours. And for me the insomnia part i relentless, Even though im medicated for it. There are alot of kind souls on this message board with a wealth of knowledge and understanding, with that in mind I hope you stick around.


Jon
[QUOTE=jodom1979;2824119]Hi nichole!:wave:


Welcome to the boards. I newly Diagnosed as well. Its been a little over a month that I found out I have it in my knee. Yes it is very painful.I truly hope you have a compassionate doc and that he or she takes care of your pain. As far as muscle atrophy goes, I have it and it seems to be gettign worse as the weeks go by, no matter how hard i try.

Just keep fighting and hopefully they caught it in its early stages and are able to possibly put it in remission. I too, take a whole host of meds some similar to yours. And for me the insomnia part i relentless, Even though im medicated for it. There are alot of kind souls on this message board with a wealth of knowledge and understanding, with that in mind I hope you stick around.

Jodom: Regarding muscle atrophy in leg. I too have RSD in my knee and the muscles were shrinking from non-use, so i went back to my water exercise routine. No impact, little or no stress on the joints. Although scary at first, is easy now and I do a full workout in the pool. It has also decensitized me a great deal and my pain levels with medication are about 1 or 2 normally, and 5 or 6 on a bad day after walking just a block or more, whereas before they were 5 or 6 with meds and 9 or 10 if I walked at all. I am in a regular acqusize program. I just work at my own pace depending on how I feel. No one pushes you. Many recreation centers have a Kenesiologist who will work one on one with you to get you started. Good luck.:blob_fire Laura.


Jon[/QUOTE]
Hi Nicole,
I have had RSD for seven years now. I was in remission about two years ago. But have been out and fighting for the last two due to a work injury and a "small town doc" messing around with a needle. First I have I must say, if you can get your doc to take you off, Nurontin and ask for "Lyrica" it is much better with less side affects, also try to add Clonodine. The Cymbalta is a great start. and the nerve blocks are only temp. Try not to do many blocks. do those if thing start to intensify. This works real well for me. My rsd has now spread from the origonal site, my right foot, to both my legs and my low back. I had surgery back in 1999 for a bunyonectomy, that was the start of my misery. I do a lot of research on RSD and have been in nursing for 15 years and now work as a Radiology thech and administrative assistant. But I have some connections. Anyway check into those meds, I am sure they will bring you better relief. The main thing to do with RSD is to control the pain, no stress or as little as possible. You really have to work at it but there HAS to be YOU time, to relax with quiet music and think about good thing. everyday! And absolutly NO ice, DO NOT elivate no matter what you hear!!!! RSD already decrease's blood flow, You need to keep it warm and increas flow. Heat and exercise. You absolutly must use your arm, you said it is shrinking.....ane you keeping it imobilised because of pain or the doc said to??? DON'T that is why it is shrinking. Number 1 saying for us is "Use It Or Lose It!!!" you must move it, use it, exercise it. start at a little bit at a time and work your way up several times a day, don't over do it take it easy you don't want to aggrevate it too much. But you have to use it.
Both my legs are swollen up to just above my low back, they are moddeled and sweat awfully. I feel like I am walking on hot coals with flames being held to the intire lower half of my body. on a scale of 1 to 10 my pain without the meds is about a 30! but with them they stay betweem a 6 to an 8. I am much furthur advanced in this disorder/diease so with you just being diagnosed, you have an EXCELLENT chance to put it in remission! Keep fighting, do your Research on RSD there is loads out there. It is very important.
Take care and Best of luck to you!
you will beat it if you never give in to it!
sincerely,
ahoksbe





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