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!!!

Pauliana,
I just wanted to welcome you to the site. I am so sorry that you had to be here because of the monster rsd, but I am really glad that you are here. Everybody here is so awesome and they take the time to read and answer any questions you may have or if you just want to talk to get things out you are more than welcome to do that as well. You have come to a great site. I will say it again welcome.

Sincerely,
Tracy(screwballpookie)

Ali,

I am so sorry about your Grandad passing away.. Sending you my sympathy from afar.. Good Grief they even messed up your splint. They should
make that right and correct it. Good luck in making them to the right thing..

Allen,

Distractions definitely help.. Funny movies, I have several friends I email, a couple of hobbies.. They all help keep my spirits up!

Diana,
HBOT sounds promising. I am looking into finding a location that has one..I will PM you..Thank you so much!

Sandra,

You are so right, it is best to know as much as possible about this demon RSD..I have found that my doctor knows some about RSD but not as much
as I would like..Nice to meet you too!

Mike, Thank you for the welcome..I will be trying some different things to see what works for me.. I was discouraged with my first lumbar block.. so I will stay with Neurontin, Baclofen and Tramadol for now..

MomiINPainRSD..Greetings Neighbor! I do have to get back to walking. The swelling is making that a challenge for sure.. I can now move my toes and my ankle I can't bend at all..I will keep working at it..


I was a bit too over zealous with my walker and managed to pull muscles in my chest,, MY PT Lynn wrapped me with an ace wrap.. She told my Neil what to buy and he came right back with it..She said she would have to charge us much more for it, when he could just buy it at the drug store.. She is always looking to save us money.. Anyway Lynn says I have to deep breathe or risk pneumonia. Since breathing hurts she was afraid I would do too much shallow breathing.. She said to be sure and take vitamins and also vitamin C. She is so motherly! I really didn't need chest owies on top of the foot and leg thing and I hope it doesn't turn into RSD.. I feel like such a mess.. Oh well...

One day at a time.. Hugs to all.. Here's to a cure for RSD!

Pauliana

I'm another neighbor.

For me it's a matter of avoiding triggers and stress. Ghinko biloba, neurontin for pain, and medications to keep me on an even keel appear best. I also need some medications for flares and insomnia.

Exercise of all sorts are great but I have to be extremely cautious with these because they are triggers.

hi you are so young to be dealing with such a horrible illness. My daughter is 15 years old and also had an ankle sprain, several years ago. She has been suffering for a long time as well. Have you ever gone into a pain rehabilitation program for children? My daughter went to the Cleveland Clinic in Ohio, It was an in hospital two week and one week outpatient. They have a pediatric one. It really helped my daughter and also many children in wheel chairs. One girl had drop foot and walked out using a cane after 8 weeks. I know you live in the UK, but perhaps they have one there. You are a very strong young lady! I will keep you in my prayers.

Hi Paulina,
One thing you might find helpful is mirror therapy. I have been doing this lately, and for me the results are more subtle because my issues aren't as severe anymore. My PT did say, however, that when this is done early in the disorder that people often feel immediate and substantial relief. Good luck--I hope you can find something that works for you!! Also, I was diagnosed about 18 months ago, and I have improved dramatically (it was caught early--6 weeks after surgery). So I wanted to offer you a bit of hope

Thank you so much for your kind words - I really appreciate them! I'm so sorry to hear that your daughter has RSD at such a young age also - if you would ever like anyone to talk to, please know that I am here for you because I do understand how scary it can be at times dealing with such an awful condition!!

I have attended an Intense Physical Therapy Program at Great Ormond Street Childrens Hospital here in the UK. The first time it really helped me - I was in a wheelchair and they got me walking short-distances within 3 weeks but the program didn't help with my pain at all. The PT's later asked for me to attend the Program again as they wanted to try and ease the pain and get rid of the Dystonia that I have and it didn't help me at all. I was due to return back to the program now to have my leg put in a full leg-cast but we chose not to go as the thought of it REALLY scared me and I have heard so many horror-stories about casting an RSD limb!!

I am SO glad that the program helped your daughter - that is such great news! They only have one program here in the UK that specialises in Intense Physical Therapy for RSD so it can take quite a long time to get onto the program. I really wish they would have more programs like this here in the UK as we had to travel 3 and a half hours to get onto the program and it meant we had to live away from home for 3 weeks which was pretty stressful lol.

Take care and send my love to your daughter and if she ever wants to talk to anyone, I am here!