carol718Reflex Sympathetic Dystrophy Syndrome - What Is RSD, and wherecan I get treatment?
- Posted:
- 24 Nov 2009 by carol718
- Topics:
- reflex sympathetic dystrophy syndrome
Answers (6)
26 Nov 2009
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.
barbles241328 Nov 2009
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.
barbles2413
28 Nov 2009
I was diagnosed by Pain Management doc then treated by an another PM doc who was an anesthesiologist because he was able to do the invasion proceeudres like nerve stimmulators and blocks.The do some testing with temp of your extremity checking for numbness and tingling color changes in the skin. I agree with a referral from your primary to one of the above suggestions neuro ortho pain management Good Luck
Steve_RSD
30 Sep 2010
The best doc to diagnose and treat are pain docs, anesthesiologists who specialize in treatment of chronic pain diseases, anesthesiologists are not only in the Operating Room but also are specialized to treat and diagnose RSD and other chronic pain diseases.
6 Jan 2010
Hi Carol
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.
freebird76
18 Jan 2010
Hi i am new to the group i've had CRPS for 8 yrs now and you did a wonderful job of explaining CRPS/RSD . i couldn't have said it any better. i'm currently getting the ketamine infusions have any of you been getting this treatment option?
carol718
6 Feb 2010
Thank you trader girl64 for your concern. Your answer and everyones are just great and very helpful. I haven't been back for now because Iv'e developed some complactions. Iv'e developed shingles all over and my family Dr. can't seem to get them under control. We now have me on Valtrex 3x's a day to try to control it. The breakouts are a little better but not controled and the pain is unbareable along with the CRPS. He has now going to send me to a Rheumatologist for he said there was something showing up in my blood that needed a specialist, he wouldn't say what. This has lead to Postherpetic Neuralgia, which is worse nerve pain all the time. These all seem to be connected to nerve inflaimation, I hope this new Dr. can help. I am currentely in pain management for my medications and have been for 3 years trying to figure all this out. I take Cymbalata, Limital,Motrin,Methadone for pain, (I did take Viccadone for 3 yrs.
RSDHurtzme
Lifewrsd Steve_RSD
30 Sep 2010
cold and touch sensitive, my initial injury was a tear in the ligament in my left ankle, during PT they put on a cold compression boot and thats when i tore up the bed that i was laying in, thats when we realized something was wrong, was diagnosed within that week. http://rsdhealthcare.org/ - its a rsd research and treatment center, theres not a lot of hope, but at least we now have a center that is dedicated strictly to our disease. Someone knows and is working on it.
30 Sep 2010
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.
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i just wanted to say that i was told by many doctors that ice is the absolute worse thing you can do for RSD it only makes the condition spread.
i also wanted to say i've had RSD for about 8 yrs and you did an excellent job of explaining it
"For me, ice works well. I have to leave the ice pack(s) on until my skin is actually numb." OUCH... is all I can say and screaming in pain to boot, for me cold in the worse precipitator for a RSD/CRPS flare-up. Our Northern Ontario winters really take a toll on me, long johns, double socks and a triple sock on my left foot with sherpa insole slippers :D it's my favorite winterwear, although as unattrative as it maybe., it sure helps with our long cold winter nights. Even a slight breeze from a ceiling fan or sudden temp. change in the shower to cold elicits extreme pain. I've even had to wear those ugly croc foot wear in our shower (stone floors & walls) to be able to comfortably shower (must be a funny picture eh!). Gentle hugs to all
ps. Anyone else have ideas to keep warm in this cold weather?
Kim
i know what you mean about cold weather and having more pain b/c of it.the winter is always worse for me.please just look up" rsd and ice"or can ice make rsd spread" it might make your pain feel better but ice is bad for rsd.i used to use ice before my doctors told me not to.i would lay ice packs on my foot and leg like your saying until it went numb.but if you read about ice and rsd it's not good b/c rsd is all about the sympathetic nervous system that's why there's more pain in cold weather b/c we don't have enough blood flow.
Dear Christine, I was just looking over the site when I spotted your comments.The reason I went furthur was to see what R.S.D.
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was.As I was not familiar with it.From what I can tell it seems similar in both the onset which fibromyalgia also is believed to begin after an injury or trauma to the back or shoulder area.I was not diagnosed until 17 years of being treated for everything under the sun.I can only assume Dr!s were slow to believe the valididity of a pain disease that did not come with a drug addict looking for med!s.I have been told everything from I needed to relax more to why did I not drink socially.Oh well.Also having numerous back problems and unsuccessful back surgeries I believe we were at the same point with being willing to try anything to resolve the pain,depression,isolation and just basically the quality of life overall.Needless to say I started with a new group of pain control Dr!s a year ago .It was hell from the start with this group I am still unclear as to whether it was the Doctor himself or his staff that decided to make my life a living hell for a while.But I finally gave in after numerous promises of the quality of my life improving with the back stimulator.I went for the trial the last of October,which should have told me to run the other way when after the procedure the people who upon first meeting were above and beyond both professional as well as enchancing all of the things I would be able to do again.Upon waiting for my blood pressure to stay up enough to go home one of the reps sat in my room very pleasantly explaing the stimulator and how to program it which of course I forgot the moment she told me with still fighting my way out of the anesthesia but also both putting her phone number in my cell phone and making sure she had both numbers to reach me stated I would probably be sick of hearing from her by Monday when I was due to go back to make the decision for the permanent one as well as remove the trial.I never herd a word from her that weekend.Needless to say someone else was present at pain control that day.Who wanted an immediate answer.I then asked what was I supposed to be deciding on with the trial stimulator since no one had bothered to inform me of what I was to have expected.The only thing I had been told was I would have less and less need for pain meds and my quality of life would improve dramatically to the point of changing my life for the better.Of those 2 things I am still unclear how I was to give an answer since having any type of surgical procedure takes more than 2 days before that pain leaves enough to evaluate anything in life.I went ahead with the permanent one and have had nothing but problems since.Only one of the three programs seemed like it might be helping but before I could determine for certain it quit working .I have yet to get someone to meet me after 2 months to try to fix.So please I am begging you for your own sake take your time ,resaearch,go online to there website,meet people with success stories as well before you go forward.Personally If I had it to do over agian I would not have the procedure.I would follow my gut instinct.As I now have more pain and I am more limited in the few activitires I was able to do.The DR. that I began with has also left just not showing up after a weekend off.And although I have been given phone numbers for several of the people from Saint Judes I have yet to get them to return my call.Also I have found out that to remove now would entail a long cut because of the wires have skin and tissue that has attached by now.So please again just be certain of the peopke you are with and the care you can expect.I wish you all the luck in the world and believe me I am in no way tryingto fully diswade you because I do believe in fact that there are others out there that perhaps have had all of the things I was promised.I unfortunetly am not one of them.Good Luck ,,Kathysbest
Thank you so much for explaining so clearly what I can never do. Just reading your post has brought me to tears. I have been diagnosed with RSD after slicing my achilles tendon. Until this year, I never even took tylenol, and now I spend my days so doped up on Hydrocodone, Oxycodone, and every other type of pain med out there. None of them work. I can't sleep at night... and I feel like my life has ended. I will be having surgery on August 31st for a temporary spinal cord stimulator. This will be in for 8 days and then removed. If I found relief, I have to wait 6 weeks for the complete unit to be put in. How do you live with this disease, and still have a productive life? Any tips would be welcomed.
Omgoodness I am not alone I am so happy to find people who suffer from this nerve disease as well. I know it's a terrible condition I am 31 just got engaged and suffer from terrible pain in the right foot all the way to my hip.
I tell you it is so hard to find anyone who understands I am so happy I have found you all. I too am doped up on meds b/c the pain is very hard to control because with me I get the freezing cold limb with the purple blotching, sometimes it looks corpse white..yuk. My pain has limited my activities I am always tired from lack of sleep my activities have to be scaled down because I can only stand for so long.
I am sorry to ramble I am just so relieved to not be alone. I feel aweful that I can't be my old self which, is very frustrating. Thank you all for listening I look forward to getting to know you all better :)
Mahalo~Dani
please bear with me, first time on line, can i join in, have rsd since 69
After fifteen months of this disease I found that social security has determined that I qualify for disability. They deemed me 100% disabled. If they had no problem within two months of investigation to figure this out why is it so hard to find a doctor to take on my medication and way of life. This work injury has taken everything from me and after the right foot was crushed, the pain is so uncontrollable... spreading up through my body as if I was standing in the middle of a bomb fire. Not to mention the sleep that I don't ever get. I feel for every one out here that is dealing with CRPS II. Will kepp looking for people with a similar injury to the right foot, ankle, hipps, lower back. Please E-mail@ popcornhead34@gmail and or the support groups. Thank you all for any advice...