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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Jenna. Welcome to HB. I am so sorry that you have RSD. When did you start with the symptoms? What kind of injury and surgery did you have? This is a great place to come for information, support, to share experiences, or to vent when you are having a tough time/day. Everyone here is extremely helpful and kind, and we all do truely care, as I am sure you've been able to tell while reading through our old posts. You'll get great information, better here than anywhere on the internet in my opinion, as you'll get information from people who've been there, done that, and can tell you about there experiences (but it's still very important to research RSD on the web). What you choose to do with the information is up to you of course, but it will help you become more informed, which is very important when mapping out a treatment plan with your doctor.

Julie, as usual, gave you good information. RSD is so complex, which is why they changed it's name to CRPS (complex regional pain syndrome). There is no rhyme or reason to it, and no-one knows why one person's RSD spreads to other parts of their body while another person's doesn't.

You asked good questions, and you seem very intelligent in the way you are trying to take charge of and become informed about your condition. That is terrific, be proud of yourself.

"Which doctor should be treating RSD?" I would let the PM treat your RSD. Many of them specialize in the treatment of it. He can prescribe the pool and desensitization therapy, as well as your meds. BUT, if you do decide to see both doctors, make sure that each doctor knows *exactly* what the other is doing, and what meds are being prescribed to you.

"I am in NY are there specialists that treat just RSD?" I am not in that area, but I am sure that there are several that do. There may be a Mayo clinic up there that can help you? Do a search on the internet and see what you can come up with. I am sure someone on this board might know of someone.

"What is the difference between vicodin and percocet?" Percocet is Oxycodone Hydrochloride and Acetaminophen. Other brand names are Endocet, Roxicet, and Tylox.

Vicoden is Hydrocodone Bitartrate and Acetaminophen.
Other brand names are Anexsia, Co-Gesic, Hydrocet, Lorcet, Lortab, Maxidone, Norco, Zydone.

"Is 18 too young to get a scs?" That is a tough question. It is also a personal choice question. If I were you, I'd try to find out which anesthetic you reacted to, and how you reacted. If you know this information, it might be possible for you to get blocks. (i.e.: If you were having surgery, and they were putting you to sleep, they would not be using marcaine to do that, so it might be okay for your doc to do marcaine injections. Also, it might be possible for you to have epidural infusions instead). I would look into it, to see if there is a chance at having other options.

"Can RSD just go away?" My PM has told me in the past that he has had a few patients that had their RSD "just go away." He said that it is important to use the affected limb to try to stop atrophy, and that, basically - this is not verbatim, but it is close, that when these patients tried to resume as normal a life as they could, it took their mind off of the RSD, and after a while, it went away. Is this true? Beats me, but I hope that there is the possibility that this could happen.

"If that happens and you have a SCS in do they remove it?" I don't know for certain, but I would want mine out. But then you have to remember that surgery can trigger RSD, and you already have it (RSD), and even though it is in remission, you never know what will happen should you choose to have the surgery to remove the stim. This is another personal choice question.

"Is it true narcotics should not be used in RSD?" I don't think so, and neither does my PM, but there are those that do believe that. I am thankful to be able to take something that makes it a little easier to get through the day.

"any other advice?"
*NO ICE like Julie said.
*Warm soaks with epson salt, and/or a parrafin wax machine for acute flare-ups.
*GENTLE physical therapy. Don't let them push you to the point where the pain gets bad. That won't help you, it will hurt you.
*Use your foot! Walk, stretch, do something (just don't *over* do it). Prevent atrophy.
*Hit the internet and research as much as you can so you can make informed decisions regarding your treatment.
*Remember, YOU, NOT your doc, has the final say with what you want to, or don't want to do/have done. If you are not comfortable with something, DON'T do it. Don't let your doc make you feel that you have to have something done simply because he is a doc and says you ought to/need to. That's hogwash. It is his job to inform you of your options, it is your job to choose which options you choose to go with. That's why researching RSD is very important.
*Print out some of the articles and poems and letter that you find, either here, or elsewhere on the internet. Share them with your family and friends. try to help them understand RSD, so they can help you.
*Come here and share your experiences, both highs and lows with us. Vent when you have a bad day. It's good to talk with other people who truely understand what you are going through. If a person does not not have RSD, then they will never truely understand.

I hope I was able to help you.
Sincerely,
Cathy
I can't thank you all enough for your wonderful replies! I feel much better knowing I can come here and "talk" and get great advice. I'll try and answer all your questions (sorry if I miss any) and I have a few more too.

In my first post I forgot to mention how I got RSD. It started with a sprain @ cheerleading practice. It didn't get better so the team physician recommend I have arthroscopy. The arthroscopy showed nothing wrong. A "perfect" joint. Well 3 days later the burning started, and my other ankle symptoms persisted. I had an MRI and my surgeon then sent me to an ankle specialist. The specialist told me I had RSD and that I needed lateral ligament reconstruction because the damage was "triggering" the RSD. Let's just say the RSD was mild before the surgery, and now has spread all the way up to my hip. I didn't do my research before hand so I wasn't aware that a lot of doctors say surgery should not be done on a limb with RSD. Are there any exceptions to the not having surgery rule w/RSD?

I noticed in many of your replies you say not to use ice. Right now my therapist is using ice. Basically my therapy consists of whirlpool, massage, compression pump for 40 min, ROM exercise, ultrasound, heat, and stim w/ice. I do this 3 times a week then pool therapy twice per week. I have also been told to use ice when I use my TENS unit @ home 2x per day. To be honest the ice and compression pump HURT, and on the rare occasion I complain to my therapist about the pain I am told it is a necessary part of the desensitization process. He also tells me I will be in pain since I can't receive blocks. Let's just say I have to hold back the tears till I get home after every therapy appt. Apparently my therapist mainly deals with RSD, and has for 10+ years that's why I was referred to him. I'm suprised he is using ice now. Should I refuse ice treatment? Is it ok to use a compression pump on a leg with RSD?

I am upset I can't get blocks. It seems like they can really help people, and I know if they worked I would be able to tolerate PT a lot better. I have a history of reactions to local anesthetics. Originally with novacaine at the dentist when I was younger. Then I used solarcaine on a sunburn a few years ago and had a bad reaction. If I chose to get the SCS I was told for the lead insertion I would be in "twighlight sleep" w/analgesia then a general for the rest of the surgery.

I saw someone mention epidural infusions. I did a search and didn't find a lot of info on them. Has anyone had them done? What is the procedure like?

Again thank you for all the advice and support! :D

Jenna
Hi Jenna. WoW, um... I'll be truthful. I'm trying not to exert too much of the anger that is building up inside of me since reading your post a minute ago. You are the second person this past week or so who has written about their therapist using ice on their affected limb.

It boggles my mind that there are so many so called " medical professionals" who have no idea, no clue what-so-ever, not even an *inkling* of the pain and anguish they inflict on people because of their lack of knowledge and simple understanding of the profession of which they supposedley specialize in.

I would not be able to be polite to my therapist, who has mainly dealt with RSD for the past 10 years (and thus I am sure considers themself an 'expert' in the field). But then, I wouldn't have to be nice, because I would not go back to him/her, EVER. How can someone be so ignorant to their own specialty?!!

That said, I feel better. Sorry for venting.

After reading your last post, and then re-reading your first post, if I were you, I'd drop that ortho like a hot potato and let your PM treat your RSD and refer you to a DIFFERENT physical therapist.

I had 2 epidural infusions. I have upper limb RSD, so it is different for me in that I could walk around where Bryn could not when she had hers. My doctor used a mixture of marcaine and fentanyl, but there are other medicines that can be used. The first one I spent 5 1/2 days in the hospital in absolutely no pain what-so-ever. It was wonderful. When he removed the catheter and the medicines had time to exit my system, I discovered that I was about halfway into remission. I was in heaven.

The second one did not work so well. I believe this was for 2 reasons. The first being that it was not done soon enough. My symptoms had come back to almost as they were before the first infusion (insurance company BS), and the second reason I believe, in hindsight, was because instead of me staying in the hospital, I was sent home with the catheter on home health care. I have 2 children, and the 3 of us stayed at my mother and sister's house.

I must have been pretty looped on the fentanyl, because I had a gap in my memory of that 8 days (and I slept for 2 more days after the cath was removed). My sister tells me of a 2 hour "french chef" impersonation that I did one night to entertain the kids (my sister has a young daughter in addition to mine being there). I have no recollection of that what-so-ever. I know I did not have any pain, but I also did not get any rest, thus my hand didn't get much rest. My mother and sister said that I was always feeling that I had to take care of my kids, and do this or that for them, and that I was not sleeping well at night either. In the hospital, I could sleep whenever I wanted to because I basically stayed in bed, where here, I was always up and around trying to take care of things like 'normal'.

Anyway, please take our advice about the ice. This really is a serious matter, and ice WILL cause your RSD to spread. Oh, you asked if there were any exceptions to the not having surgery rule. You know that RSD can become worse and spread, so what surgeries you need to have done are up to you. Stims and pain pumps are surgeries, but alot of people have them done. I would avoid unnecessary elective surgeries myself (plastic surgery and the like), but if your appendix bursts you have to have it removed or you will die. I'd opt for removing it :D

I'll be keeping you in my prayers,
Cathy





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