Hi,
I was wondering if anyone, or anyone you know, suffers from RSD (reflex sympathetic dystrophy)? a.k.a CRPS
I’m having a difficult time with it and just wondered.
Thanks!!
Not me Heather. What is it?
I’d never heard of it but after looking it up, it sounds rough. I hope they can ease the pain for you.
A friend’s husband had it years ago. Try acupuncture. It can help with the pain and possibly make it go away. They’ll have a different diagnosis for it though.
I do have a mild case of it after tearing up my ankle in April. I have also worked with many patients that have it. Has your MD suggested doing some physical or occupational therapy to see if they can offer some suggestions or do you have a pain clinic nearby?
For me, the pool really seems to help and massaging my calf with lotion when I get out of a shower.
RSD is Reflex Sympathetic Dystrophy. The body has an exaggerated response to injury. The theory goes like this: an injury happens, the sympathetic nervous system is stimulated inducing a heightened pain provoking the person to not move the body part thereby increasing the pain etc. in a vicious cycle. The idea is to relieve the pain at least temporarily so PT can be started and the cycle broken. Its often characterized by skin color changes (bluish) shiny skin, loss of hair and muscle wasting. A lot of times though, a doctor will use that term when a person has a lot of pain and the doctor doesn’t know what caused it. Its really important for the person to get a doctor familiar with the syndrome to correctly diagnose and treat it.
Hi Heather,
I’ve had it for years, since having six surgeries in one month, and more later, for necrotizing faciitis, compartment syndrome, and one other dx that won’t come to mind right now.Came close to dying, and would have if I hadn’t had two very caring doctors.My left leg still looks like a very badly sewn football, with a twenty-two inch skin graft site, lots of swelling still, and because of muscle and nerve loss, RSD.
It’s one of those things that doesn’t fit the parameters of what most physicians are comfortable treating. You need a pain clinic doctor with more than a year or two of experience, who is willing to try different medications.
From my own experience, forget acupuncture, biofeedback and “putting your mind on something else”. This is a physical condition caused by trauma of some sort, it’s not ‘in your head’.
The only thing that has worked for me is a medication called Clonazepam. It used to be a Schedule II narcotic, not sure if it still is, but you do need an Rx for it.
You’ll see that it started out being used for psychiatric problems, but has gone on for other things.
(The #1 anticoagulent used started out as a rat poison, Sodium Warfarin is called Coumadin. It’s all in the application.)
There is a newer drug on the market called Requip, which they advertise for ‘restless legs’. We laughed about their warnings for increased gambling, etc., until one of our friends almost divorced her husband because he gambled away thousands in the few months he was on the stuff. No one put it together until he went to see a counselor.
OK, guess I’m rambling, but this is a subject that makes me a bit angry. A lot of doctors don’t even try to investigate why the patient is presenting with this problem. What can be worse than not being able to sleep night after night? After my leg started healing the RSD set in, I walked and walked at night. I hope that you will be able to find a doctor who can help you.
I have never heard of it, but it sounds very frustrating and painful. Some dr’s can be so narrowminded when treating. I hope you find someone that can help you.
From my own experience, forget acupuncture, biofeedback and “putting your mind on something else”. This is a physical condition caused by trauma of some sort, it’s not ‘in your head’.
I’m sorry, but acupuncture treats real physical conditions and is not just all in your head'. I've seen people with strokes improve weekly, and those with MS who could barely walk go back to normal lives, including skiing. As Jeremy mentioned, the key is to stop or minimize the pain to stop the response, and acupuncture is terrific at that. You don't just think’ you have no more pain, you actually don’t have pain. And without the side effects that comes with drugs.
Sue, I really wasn’t saying acupuncture doesn’t work for some things. It didn’t work for me. It doesn’t work for my husband who has MS. It didn’t work for my friends dog, though they spent thousand on it for him, as he was a search and rescue dog.
Some modalities will work just fine for some people. What I was trying to say was that a lot of doctors say the RSD type pain is “in your head”, not an actual physical pain.
True acupuncture may not work for some people, but it does work for many others, though they may have to have several treatments before seeing results. I thought you were saying not to try it at all and just dismissing it. Like the placebo effect. Which actually works because it is `mind over matter’.
And yes, many doctors think they know everything, but some don’t know anything at all.
[QUOTE=Jeremy;1133346] The idea is to relieve the pain at least temporarily so PT can be started and the cycle broken.QUOTE]
Nerve pain is not helped by Physical Therapy. If it was orthopedic, or muscular yes. I wish it was. It feels like my skin is on fire from my toes up my right leg to my rear end. If anyone touched my skin I’d probably smack them in the face as a reflex. :doh:
The injury was both of the back of my feet and my lower legs were dragged under a HUGH metal machine that could have weighed multiple tons. I had 3 major back surgeries to stop the pain. There is nothing left to do. I’ve exhausted ALL therapies. I’m the “nothing works girl”. I spend almost every second of the day laying down. That’s why I took up knitting so I don’t go insane from layin’ around.
My life came to a hault 3 years ago and it’s gonna stay that way.
thanks for listening 
It bothers me that you feel like there is nothing anyone can do to help you b/c once you reach that state there is very little anyone can do to help you. The fact that you still have pain 3 yrs later means you haven’t met the right doctors or therapists. PT most certainly does play a role in nerve pain. If we couldn’t help people with nerve pain we wouldn’t touch backs, necks, shoulders, burns, fibromyalgia, or RSD patients - and we do. Please remember there is no overnight cure, it is a long hard road and you have to persevere. Nobody can help you unless you let them.
With RSD patients we work on desensitization, reducing swelling, promoting good blood flow and range of motion, and gradually building strength. If you don’t like land based therapy start with aquatics, maybe TENS, wrapping etc.
Pain is a vicious cycle b/c pain makes us depressed and being depressed makes us hurt, having pain makes us sit still and sitting still makes us gets stiff and painful.
I would encourage you to look for a new doctor and perhaps maybe even a counselor to talk to. You are too young to be sitting on the couch.