I use to be so healthy. I was doing arobics 30 minutes every day. Then I was in a car accident and had a leg injury. The E.R. did not give me any antibiotics while I was there, did not send me home with any, and they did not give me a tetnus shot. One month later that injury develped a life threatening infection. The new doctor saved my life by removing part of my calf. Then in that same site I developed RSD. A year after being diagnosed with RSD in my calf area, I fell on both knees. The RSD spread up my leg to my knee and up to my upper thigh. I developed RSD in the other knee as well. I have to have pain management or I do not walk, or I use a cane, or use a walked. My pain managemnt doctor does a good job of managing the pain most of the time. However, he does not know about RSD. My neurologist does not know much about RSD either. No one can tell me anything. I am weak in the knees and legs. I have fallen twice in one weak. I have no idea what to expect in the future. I take pain pills only when I have to as I do not want to be dependent on them. No one can tell me anything around here.

I am so sorry to hear that you are going through this. The loss that we deal with is something that most people who don't have RSD do not understand. Right now I am only able to use a wheel chair or crawl to get around (RSD in my left ankle). I was using crutches and a walker for a while and I thought that was bad at the time...but now I would give almost anything to be back to using a walker or crutches again.

Have you looked into seeing a doctor with experience in dealing with RSD? Have you tried anything besides just medication to help with your pain. I haven't had much luck with blocks, but a lot of people do...and there are a number of other treatments out there that people have had success with. Everyone is different though.

And I totally understand where you are coming from with regards to the medications. I hate having to take pills...but often with RSD the key is to find the right combination of medications to help with the pain. Unfortunately that sort of treatment requires taking stuff every day, so if that sort of therapy doesn't interest you then it may not work.

I find that sometimes when working with doctors who don't know a lot about RSD (or any other condition for that matter) it can help to go in with information about different treatments that you may be interested in (medications, procedures, etc). If they are unfamiliar with any of it, they can look into it or refer you to someone who may have more experience.

What sort of treatments have you tried? There are a lot of people on here with lots of experiences. And we are always here for you if you just need to vent too. This condition is so frustrating...so many things about it that are just unknown or just plain freaky.

I hope you feel better soon and are able to find some of the answers that you are looking for.

Hi Linda,

So sorry to read your story. Many of us have been there. You don't say where you are from, so its difficult for any of us to recommend a doctor or Pain Center for you.

If you go to the RSDSA.org website you will find a wealth of information on RSD, including a search tool for locating board certified pain management and anesthesiologists. In southern New England I have found that they are the kind of doc that is best suited to treating RSD. Other RSDers, around the Philly area in particular, have much better results with neurologists.

There is a lot of great information on this board, read back through our postings and try to learn as much as you can about treatments, meds, docs, etc. Finding a good doc is really hard, many of us just spin in circles until we find that one special person who truly understands RSD and our pain and turns our life around by offering us the right blend of meds and treatments to get us back on our feet again. There is no cure, but with the right care you can get some of your old life back.

Don't ever give up...and keep us posted. XOXOX Sandy

I didn't have a tetanus shot either and now have RSD. Is there a common link with not having a tetanus booster shot?

Just speculation, but I'm thinking about a possible link between the normal development of IVIG in response to getting a tetanus booster, or - in its absence - an increased likelihood of picking up a Human Parvovirus B19 infection: very common in people with CRPS (I carry the antibodies). This, where a Parvovirus B-19 infection is now believed to have some potentially unfortunate autoimmune side-effects.

More to follow.

Mike

Hi I think you need a doctor who deals with RSD. It is very key I feel in treating this. What type of tests has your neurologist run? I know on the PN board we discuss how an infection can cause neuropathy. It is important to rule out other conditions as well.Also have you been to a rheumatologist? I would look into that as well.

I got a tetanus shot and RSD, does that mean I'm the winner? Not really, they sent me home and said the bruise will be better in a couple of days. I mentioned the fact that I had had lots of bruises before none felt like this, 'just a bruise' he said, oh and your dismissed.

18 mos later, unable to wear socks or shoes, I'd be happy to have 'just a bruise'.

Linda, that's what RSD does turns your life upside down. Now, finding a good PM doc is important, but finding your own info is important too, and keep moving as much as you can. Not torturing yourself, but total bedrest is not a help.

This is the best place to start your research.

Sorry for your pain, may you find a doc who's in the know!

Well put. Touché.