Hello every one mine name is Judy I was told I have RSD almost a year ago it was caused from a simple knee surg. they place a donjoy ice machine on my knee and told us not to take it off only to use the bathroom and to keep ice in it they had set the temp where the Dr wanted it and told us not to touch it that was on a Thursday I was to see my Dr on Tuesday for follow up we were told I would not feel anything for many days well on sunday I was in so much pain I called the dr she said oh my I hope you don't have frost bite come see me in the office Monday Ihad my husband take the machine off me. when we got to the Dr I had 3rd degree frost bite which set up the RSD I first went to my derm.thinking it was a skin issue and she sent me to a Pm I have had the blocks been on everything you can think of.I live outside of Jacksonville Fl and Im looking for a PM in the Chicago area.

Hi Judy

Welcome to the site, sorry you have to be here, but there are some really good friendly folk here, and excellent tips and advice about if you explore a bit....

My CRPS started after a knee arthroscopy....standard fare afterwards, keeping it elevated and iced oh the irony of that well-meaning advice. Sounds like yours was a lot more dangerous though, I'm so sorry you've had this horrible condition started by poor advice and lack of proper care. The whole thing is so frustrating, but you do just have to get past that (well mostly, lol!) and make the best of things where you can. My first year was dark and grim, but I've just started my third year and things are slowly improving at the moment. Long may it last!!

Nerve blocks are controversial - some have been helped short term, but then seen no real benefit long term, others have had more obvious improvement. ,y pain doc repeated research I'd seen that said there was no real concrete evidence that the risks of the treatment outweigh the possible benefits. I'm sorry they didn't help you though. We all hope for a treatment that works!

After a few med changes I just take low dose Lyrica twice a day, and keep as active as possible. I did physio for a long time, and was lucky to end up with a good knowledgeable physio, but I don't have regular sessions now that I can do more anyway. If you are struggling with mobility then I think physio is vital, but if you can get about well and keep active it's not as crucial. I've struggled with finding pain meds that work, and tbh I hardly ever take them now because I hated being disappointed. I hope you have something that works for you when you need it most!

If you haven't discovered their delights already, try using unperfumed Epsom salts in a warm bath, or wrapped in a damp cloth and placed on your knee. They are great, and do actually work on your pain by blocking calcium channels (not exact science there lol, but it's something like that!). I find they work very well on the hot burning pain - I'm not saying its a cure but it helps.

Anyhoo....hope today is a better days for you, and keep posting. Hope to see you around on the boards.

Bram.

Hello Judy,

First wanted to say how terrible it was that the advice given about the use of donjoy ice machine! I have never heard of someone being told to ice for that long.. whomever gave you that instruction should NOT be treating patients!!

I sure wish I could offer advice on who to see in Chicago but I'm on the opposite coast so I can't help there. I can however share a few things about what I've learned during my journey with CRPS II that may help you find a little relief from your pain.

The most important thing you can do is stay positive/optimistic despite what you read, hear or learn from anyone about this disease. BELIEVE that your outcome and future will be YOURS and YOURS alone, as this will help drive your inner strength to overcome the pain and limitations this may cause. Try not to worry about what "may" happen tomorrow.. sure we all research this horrible disease but try, as hard as you can not to let depression or fear consume you. I wake up every morning and tell myself I won't become another CRPS statistic.. that in my fight against this something amazing will come of it. Promote healthy thoughts of getting over and around every mountain CRPS throws in front of you.. never give up.. BELIEVE in YOURSELF and your ability to cope/overcome. If you feel you are in a low/dark place or heading there.. reach out to someone so that they can help pull you up/out so you don't get stuck there. We all have moments.. and that is okay as long as they don't suck us in for long.

What helps me:

Watching/reading inspiring stories of others who have survived or overcame "against all odds". Whenever I am down I find a book/netflix documentary about someone else's journey.. it almost always refuels my will to fight!

Epsom Salt soaks!! Sometimes I take a couple of warm bath soaks a day.

Recumbent Bike - I ride my recumbent 2-3 times per day. Whatever you can do walking, riding stationary bike, walk in a pool etc., keeping your body moving (especially the CRPS part) will help you fight back pain and keep the muscles from atrophy. The more we ignore the CRPS part the worse it gets.

Massage.. I get a massage on all areas that are not affected by CRPS 2x per week and is a great way to rid compensation pain or other trigger spots.

Mirror therapy & Desensitization therapy are very helpful and should be done daily for several months or more.

Regarding medications or other invasive treatments like injections etc., Not all work and everyone has a different opinion on whether or not they are worth trying. I personally am willing to try most anything with the hope that it will help me.. "leave no stone unturned" is my thinking but always remember what works for one may not work for another. Some medications like Lyrica, Gabapentin or Cymbalta take some time to show any benefits. In fact most medications don't show "instant" pain relief and need time or dosage adjustments before one can really determine if they are at all effective. Lidoderm patches, Voltaren gel and specially formulated compound cream are generally more effective after just a few applications and can be used without many issues with side effects and can also be used together. Some pain medications can help some.. nothing is 100% but with a good PM you can with some time find a combo that helps you. At a certain point sympathetic blocks are no longer effective but for those they help it is wonderful. Again.. it might take more than one.

I do hope you find a good doctor soon!! If you have any questions I am happy to share whatever I can that may help you keep fightn'.

Hang in there,
Tessa

Hi Judy,

Welcome! I'm sorry you have RSD and all these problems.

When I was in PT they put ice on my RSD hand a then heat after each session. I didn't know until after I started feeling terrible pain in my hand with the ice that it was bad for RSD. apparently the pt did was not aware of this. I asked her to stop, but who know if that aggravated it more. Anyway, after doing some research, I found out too ice was bad for RSD.

I like in New Jersey so I don't know any pm drs in Chicago, but maybe some may show up on the internet. I check healthgrades also on drs now, because some are more qualified then others with RSD.

Good luck and please let me know if you ever need to talk. My thoughts and prayers are with you. Take care.

Hi Judy,
Sorry for the awful disease that brought you here but welcome!

I was told to use ice as well for a month by ortho Dr. who did my surgery.
Only to find out later ice did even more damage!

I've also tried several meds., spinal cord stimulator trial, and over 13 nerve blocks in my neck (my CRPS is in my arm and hand). I have had good results from nerve blocks but they are becoming less effective.

There's lots of support, friendship and advice on this forum. I couldn't do without them! We've cried, laughed and helped each other so much. Well, at least they've helped me.

Here's hoping there's a combination that at least helps you cope, We're all trying the best we can and share what we can!

Hello, sorry you got here by having the beast. I got rsd but didnt know when I was stationed in Iraq serving in the Air Force. I have had 2 arthroscopic surgeries on my knee and a patello femoral resurfacing. I think the last one really did me in. This was all before I found out that I had rsd. They gave me one of those machines also after the second arthro. It hurt like the dickens. Don't let it get you down though. I figured it out on my own that ice hurt and heat felt good. I wasnt diagnosed until this year. At all my many many pt sessions they did ice until I said no. I told them if they wanted to put something on put heat it feels better than the cold. Heck I love eating ice but it hurts. Don't ever forget that when we get down and start feeling blue our pain intensifies. Its a vicious cycle. We hurt then we start feeling blue and we hurt more. It sucks, but itsna fact of our lives. I have tried elavil and gabapentin so far. The elavil caused bad mouth sores and the gabapentin make me a very happy camper when I saw my husband lol. They both helped a tiny bit with the pain. I also take norco when I absolutely have to. I have had 1 lsb and it worked awesome for about 3 days then I was back at the grind stone. But I am keeping positive that we will find the right treatment for me. My treatment will be different than your or Brams. We all feel this beast differently. What works on 1 doesnt work on another. Push yourself to find your limits then push a little harder. I said a little so you don't start hurting to the point your in a ton of pain. I am one of those I push well beyond theat threshold and am in the middle of the room before I realize it and stop lol. But you arent me. The level of pain you feel and the way you feel it is different. After almost 10 yrs I have a high threshold for pain. Shoot I could give birth and it would feel like I got a splinter I think lol. Keep smiling and don't let them push you into anything you don't want to do.

Thank you everyone I think I have found a place where I finally belong such great advice and the support from you guys are fantastic,you have made me feel that I can get thru this and not alone.I do have to say my husband is the best bless his heart he is younger than me but has stepped up to the plate like no other,I have 7 beautiful grandblessings and 3 wonderful children you guys have given me hope I feel so much better this morning.Thank you

I hope you feel better soon and thanks for the nice message to all of us. You are great too.
You are helping us by the support you give by being here too. Take good care of yourself and know that you are not alone.