QUESTION:

I was searching the Internet for something specific regarding RSD when I came across your web site. I was unable to find the answer to my question and I was unsure of what to do next. So, I was pleased to see that you have a way to contact or question via e-mail. I did not find that option with any of the other sites I was browsing. So, I would like to thank you in advance for lending your support and guidance.

I was diagnosed in February 2003 after an ankle fracture, followed by insertion of a metal plate & 7 screws to put it back together. I've had 6 different doctors give the same diagnosis and now a doctor I was referred to by worker's compensation sent me for a bone scan. I received a phone call today from that doctor's nurse telling me that the bone scan results are in and that I DON'T have RSD! I am very confused and slightly angry!
So, my question to you (or anyone in your support group) is whether or not a bone scan is accurate in diagnosing RSD and if the bone scan is negative, does that absolutely mean that there is no chance that I could have RSD?

I truly hope you or someone you know has the answer to this question. I have seen so many different doctors and my faith in them right now is a little low. Hope you can help!

Melissa - USA

REPLY

Hi Melissa

Thanks for your message. Before I start, I must tell you that I am not medically qualified. My knowledge comes from personal experience, from meeting others who have RSD, and from running this website.

I have never understood why some doctors consider a bone scan to be a suitable method for diagnosing RSD. RSD has never been proven to cause loss of bone density; it is lack of use that produces that effect, and lack of use results from the pain the patient feels in that limb... so they stop using it!

Those who understand RSD recognise that it is not a straightforward disease with a single diagnostic feature. The official medical name of RSD is "Complex Regional Pain Syndrome" and a syndrome is not so much a clearly identified condition as a collection of symptoms that frequently occur together in apparent relationship. However, the official medical name has not caught on with the general public and most people still use the traditional name, RSD (Reflex Sympathetic Dystrophy). Experts in the field generally diagnose CRPS (or RSD) when the patient shows 2 or more of the recognised symptoms:

• severe pain (often described as "burning pain")
• paralysis
• swelling *
• skin discoloration (often "bluish red") *
  
• hyper-sensitivity to touch
• increased sensitivity to heat or cold
• coarse black hairs in the affected area *
• rapid temperature changes at the skin surface

* some of these symptoms may be quite short lived and may disappear after the early weeks or months

These are listed (with more explanations) on www.rsdalert.co.uk/FAQ/watsymptoms.htm

I'm afraid that this may appear vague, but that is the state of current knowledge about RSD. A lot of people know a lot of different facts about the condition, but there is no single unified theory about what it is and what exactly causes it. However, we have advanced hugely in the ten years since I first got RSD. Best of all, the internet has made information much more available so that people can find answers for themselves.

The strongest and surest indicator that someone has RSD is the pain. If someone has severe pain in a limb that was damaged but is now healed from the original injury then it is pretty clear that something is going wrong with the body's internal messaging systems! If you are clear that there is no remaining injury that could be damaged by exercise then my strong recommendation is that you seek help from a physical therapist and work with them to regain normal use of the limb. The process will certainly be painful and stressful, but it gradually teaches the brain that there is no valid reason for sending out these false pain signals; and they gradually reduce. That is my experience and the experience of many other people. But it is not an easy solution.

I hope this helps and I trust that your pain will reduce so that you can get back to a normal life.

RSD Alert Editor