Welcome Pauliana

Please feel free to look back through the pages of this forum (page #'s found at the bottom right) for past information on almost any topic.
And or just ask.. the folks here are great and chances are you'll be helpin out someone else by bringing it up.

I am very sory you have been diagnosed with RSD but you have come to a good place for suport, friendship and research on this diagnosis.. alot of us have found that the best way to take care of ourselves is to know alot about RSD. And please feel free to cry on shoulders if needed we all do at times.

Nice to meet'cha Pauliana

Sandra

Pauliana,

I would like to welcome you also.

Your question was about what has worked or not worked for people. You will see that RSD is one of those things that will respond to different treatment in different ways for different "victims" (that's us.) There are many people on this forum who have had RSD for a long time and have tried all sorts of things. What might work for me may not work for you, and visa-versa.

If you read the posts, you will get a sense of people's 'favorite' treatments and what typical side effects to expect. But remember it might not be for you.

This is not to be discouraging -- quite the opposite. Take people's recommendations with the understanding that if it doesn't get the results you expect, try something else. Keep searching for the treatment or combination that works for you. Don't give up and, most importantly, don't allow your doctors to give up. There are plenty of things to try and more are being developed all of the time.

Remember, we are just a group of friendly people trying to be here for each other. There are no stupid questions. You can also use this board to rant if you like. We will understand, because we have all been there.

Good luck and, again, welcome.

Mike

I am so sorry I am so delayed in welcoming you to the forum. I, too, was just diagnosed with RSD about 5 weeks ago after ankle surgery. I am lucky (in a way) to have been diagnosed just a week after my symptoms began (they were so clearly obvious) and started treatment as soon as possible. I am currently undergoing a series of sympathatic nerve blocks in my spine. For me, they seem to be doing SOMETHING.....not a cure, but the allodynia is better, as is the swelling in response to standing (I used to not be able to stand but for a few moments).

The biggest hurdle is getting your limb in use again......taking whatever pain meds you need to in order to successfully do your PT. NOT pushing yourself to the point of pain, which will only set you back, but just to that point to regain flexibility. Like I said, the swelling was so profuse in my ankle that I could not successfully move it. The blocks seem to have helped that. My PT did the "milking" massage on me as well.....told me to repeat several times a day. Epsom Salt soaks are very soothing and there is clinical research that shows that it helps down to the cellular level with the swelling.

I am VERY assertive with my doctor and the nurses about proper pain management during the IV and injection. I make no bones about telling them they need to give me more meds so I don't feel it, or that they need to acquire proper numbing meds for my IV. I take every chance I get to educate EVERYONE about RSD.....so many, even in the medical profession, have never heard of it. I am SO sorry for your bad experience. I, too, had one bad experience at a different hospital than usual (I have a block scheduled there tomorrow morning). I swear, I will NOT let them put an IV in me and go through with this block without numbing meds.......PERIOD. They poked me 3 times with the IV needle before they got it in just seconds before they took me into the room to be injected. I was awake and aware and freaked out the whole time. My other four blocks were lovely......no problems at all (except my allergic reaction.....they give me benadryl in the IV).

Again, SO many people here on this forum are so sweet and knowlegable about this disease. Many people have tried many different approaches. You have got to decide what works best for you through trial and error. I have heard that an aggressive, multidiciplinary action is the best course (i.e. meds, blocks, therapy, etc....).

Please keep us posted on how you're doing, and write with ANY questions you may have. I actually trust the people that LIVE with this disease more than I do the docs that may read a medical article every so often about it. Just don't be shy about getting several opinions or saying "no" if you feel uncomfortable. It is OUR body that is affected......NOT theirs.

BTW.....my RSD has already spread to my other foot (just 5 weeks into it and WITH injections). I encourage you to act quickly and take very good care of yourself. Read, read, read as much as you can......dig into the internet and focus on articles printed in this decade especially.

Best wishes for a pain managed evening to all!!!