Reflex Sympathetic Dystrophy, also called Complex Regional Pain Syndrome is a painful, chronic, progressive neurological disease. It affects the muscles, bones and skin of the affected limb. Generally, it develops after some type of trauma ie. fall. Other times there is no explanation as to why some people develop the disease.Characteristics include burning pain, sweating, coldness, swelling, shrinking of the limb and intense pain. There will be times when the disease goes into what I like to call "remission" and symptoms my improve. There are 2 types of RSD/CRPS- one w/ nerve injury and one without. Unfortunately both types share the same characteristics. The most important thing to remember is that treatment/diagnosis in a prompt manner tend to make all the difference. Unfortunately, my RSD/CRPS is worker's compensation related so I've been treated in a very slow manner.
I was unable to be "officially" diagnosed and begin to receive minimal treatment until about a year and a half into the disease. I have gone through just about every opiate the pharmacy stocks, stellate ganglion block injections and am currently awaiting a spinal cord stimulator. For me, ice works well. I have to leave the ice pack(s) on until my skin is actually numb. Insomnia goes hand in hand with this disease as well. Partially due to the pain and also the drug side effects in the treatment of pain. I've developed such a high tolerence to pain meds nothing works at this point. There are alot of helpful sites on the web, try not to over analyze. Make sure your doctor understands that this is not a psychological disease but a very real, painful journey. Alot of doctors and people can't comprehend how much pain is involved in an injury you can't see with the naked eye. You can see black/blue marks, broken legs, etc. but the symptom of intense pain baffles alot of people. I hope I've helped, theres no easy answer. Good luck, God bless and if I can answer any other question please feel free to ask-Christine
Depending on the location of your pain determines best who may or may not be able to diagnose your RSD. For upper extremities a hand specialist should be able to diagnose your symptoms. For lower a podiatrist may be better. IMPORTANT! ASK before you make your appt if the physician treats/has experience with RSD! Often they do refer to larger hospitals and pain management specialties. You should encourage your primary dr to refer you as soon as possible if you think you or someone you know may have RSD. Early diagnosis and treatment is important for a good prognosis. I hope this is of some help to you. Please let us know if we can be of further help to you.
Just wondering if you found a Pain Management Specialist (Dr.) as of yet, I realize it's been six weeks since your last post, however time is of the essence with CRPS, the earlier the diagnosis and treatment the better.
Every patient with CRPS responds differently to each therapy -- what works well for one patient may not work at all for another. Because of this, doctors may need to try many different medical therapies in different combinations. It is often best for patients with CRPS to see pain specialists, who are experienced in taking care of patients with difficult pain problems.
No single treatment, such as a pill or nerve block, can cure CRPS, but many CRPS patients do find that their pain and other symptoms get much better with the right therapies. CRPS can improve when patients:
get treatments that lessen the pain (such as nerve blocks, medicines, and other treatments), take part in a physical therapy program, and
get helpful psychological treatments (such as stress management skills).
Until recently, doctors thought that CRPS always involved a problem in the sympathetic nervous system (a set of nerves that control the size of blood vessels, sweating, and many other bodily functions). They now think that only some patients with CRPS have these sympathetic nervous system problems. Pain that comes from problems in the sympathetic nerves is called sympathetically-maintained pain, or SMP. The only way a doctor can find out if a patient has SMP is to do a sympathetic nerve block. (Sympathetic nerve blocks are injections of a numbing drug, called a local anesthetic, into different sites in the body). A person suffering from CRPS can be said to have SMP only if he or she has good pain relief from a sympathetic block.
If SMP does not explain the pain in most patients with CRPS, what is the cause of the pain? Experts agree that there are problems in the peripheral nervous system (the nerves in the body) and the central nervous system (the brain and spinal cord) of patients with CRPS, but the details are not known. There are other factors that can be involved in the development of CRPS because they directly affect the activity of the nervous system, muscles, and bones. Examples of these factors are emotional issues or stress and not using a painful body part.
I hope I haven't inundated you with too much information, I belong to a RSD/CRPS Group recommened to me by my Specialist and have become my own best 'advocate' on my 'PNS' & 'CNS' ... after having CRPS for almost 5yrs (June 3rd, 2010) due to ooops of the knife during surgery and severing the Obrurator Nerve in my Left Medial Thigh, I guess I can say I've become somewhat of a educated 'Pain Survivor'. All'ss I can say is read, read, read all you can get your hands on about RSD, CRPS, Causalgia, Sudeck's Syndrome and medications that the other members of this group have mentioned or the drugs hat your Dr./Specialist suggests. Just remember no wo patients are the same with their pain and symptoms but we all share something in common, we all live in varying degrees of pain 24/7 365 days of the years with different side effects.
Goo Luck sweety on your journey, may you have pain-free days, it's your body and you're in control, please remember that when you visit your Dr.
I have rsd and i recently stumbled across an rsd research and treatment center, first of its kind around dedicated to the disease. Its in Tampa Bay, FL, http://rsdhealthcare.org/ , unfortunately there are only a few treatments out there and the probability of them working for each patient varies. There are also some people who have rsd that is resistant to many treatments, i am one of the lucky ones. I had lumbar nerve blocks that made the area that the pain was affecting spread, into other limbs. If you have any questions just let me know, good luck, i hope you find a good doc, they are hard to find, stay strong.
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
Posted 5 Aug 2009 • 10 answers
Posted 19 Nov 2010 • 8 answers
Posted 27 Oct 2011 • 4 answers
Posted 17 Jan 2012 • 3 answers
Posted 9 Oct 2014 • 1 answer