Reflex Sympathetic Dystrophy or CRPS (implant, depression, insurance, support group)

[dantesnana]

This doctor believes RSD exists. In fact, he knows from personal experience that it does. He had it himself and used his machine to put it into remission. When patients come to him, he knows what they are feeling. He also has testing equipment that shows whether you are in pain. Most doctors don't know how to test for it. This one does. He has done extensive research for the last 15 years to learn what he knows. He has treated thousands of patients successfully. If you can travel, this is the doctor to see. Check out painbanishment.blogspot.com. It has not been updated for a long time, but there you will find two brief patient stories. More are in the book. If anyone can help you, it is Dr. Rhodes.

Good luck.

[jmking]

Originally Posted by dantesnana

This doctor believes RSD exists. In fact, he knows from personal experience that it does. He had it himself and used his machine to put it into remission. When patients come to him, he knows what they are feeling. He also has testing equipment that shows whether you are in pain. Most doctors don't know how to test for it. This one does. He has done extensive research for the last 15 years to learn what he knows. He has treated thousands of patients successfully. If you can travel, this is the doctor to see. Check out painbanishment.blogspot.com. It has not been updated for a long time, but there you will find two brief patient stories. More are in the book. If anyone can help you, it is Dr. Rhodes.

Good luck.

Thanks for the info dantesnana. My wife has completed both ketamine and lidocain infusions at GW hospital with no success. She is now in stage 3 of the disease. I checked out Dr. Donald A. Rhodes site-- Chronic Pain Center, STS Units, Physical Therapy Treatment, RSDS, Chronic Pain Treatment, Texas (http://www.paindefeat.com/wiki/PDFT/HomePage - broken link)
and requested more information from them. I do like the non-evasive treatment because this is fundamental to those afflicted with RSD. My concern only is the level 3 my wife is currently at which is much harder to treat. The mandatory reduction of narcotics concerns me too because my wife is in so much pain it is these pain meds that saved her life. However, if Dr. Rhodes method works then it's a good thing. Also, it is most likely a treatment health insurance companies will refuse to pay, but that wouldn't stop us.

[Kitty Myers]

I've had RSD for 3 1/2 years and have been going to Dr. Swartzman in Philly since last year when I was officially diagnosed. I am due to have Ketamine treatments starting 8/8 for 2 consecutive weeks with a break on Sat/Sun. I will get an IV port and recieve treatment for 4 hrs. a day. I do hope this helps as I have full body RSD. I will post to let you know how it goes. I'm sorry to hear about your wife's struggle with this frustrating disease. I was a hairdresser for 30 years, I stepped in a hole while out for a walk and wound up with it.The burning is unbearable, neurontin,cymbalta,ambien,vicodin make it somewhat bearable but life revolves around making sure I take my meds on time or the pain overtakes me. It's very hard on a daily basis to put up a front when you feel like you want to lash out.
I miss my old life and my clients of many years. I never thought I'd have to give up a profession I dearly loved. I'm normally a very optomistic person but I have to say there are days (many) that frankly I'd rather not go on.
I'm grateful to have my faith and know that I can get through the next few minutes,hours,days if I take at a slow pace and never give up.

Sorry this was so long.
Gentle Hugs,
Kitty

[Roselvr]

thanks

[buricoy1]

My husband has RSD after having a heart bypass surgery. His leg where the saphenous vein was harvested got the RSD. He is taking oxycontin 20 mg. plus Lyrica 3 x daily but still suffering from pain. He had lumbar injections but didn't work. We're looking for someone here in Arizona who could do ketamine injections . I would like him to try that. I'm sorry if it didn't work for your wife but I don't want to stop looking for a cure .

[jmking]

Originally Posted by buricoy1

My husband has RSD after having a heart bypass surgery. His leg where the saphenous vein was harvested got the RSD. He is taking oxycontin 20 mg. plus Lyrica 3 x daily but still suffering from pain. He had lumbar injections but didn't work. We're looking for someone here in Arizona who could do ketamine injections . I would like him to try that. I'm sorry if it didn't work for your wife but I don't want to stop looking for a cure .

Never stop looking! There is the RSD Research facility in Tampa and some hospitals in your area my provide Ketamine infusions now when just recently may not have. In my opinion, I'm no doctor, your husband's pain dose and veriety of different meds for muscle and bone pain are low and are missing. His doses look very low. If your husband continues to suffer greatly demand better pain management or find another doctor.

[Christy medical journey]

Seek out a pain specialist, an anesthesia dr who works directly with patients to manage pain. I have had RSD for seven years, a rare case as it is in my face due to a root canal improperly done. I've read and heard a lot about people having the Ketamine infusion. In my opinion, it seems like the patient has to have a lot of booster injections of Ketamine. My believe is each person who has RSD/CRPS responds not only to the pain differently, but the treatment options as well. If you were to light a torch and imagine putting a finger in to be burned and what the pain may feel like, RSD pain is much greater! The burn is unrelenting!! May prayers, patience and grace blesss your family.

[Christy medical journey]

Originally Posted by old_cold

She has bone ends that are disintegrating due to RA and had surgery to realign/reattach a toe about 2 years ago.
RSD was diagnosed when, instead of getting better, the pain and burning of RSD made things appear worse.
It now most severly affects both feet and her hands.
As you can imagine, she now refuses a planned knee replacement and all other joint repairs after being cautioned that this may be a result for any other location.
The 'best' option she's been offered is disabling the nerve.
Do understand, she has other complicating disorders that haven't allowed conventional treatments and has been on time-release plus breakthrough does of morphine for many years now.
Even that seldom makes much of a dent on the burning pain of the RSD.

I too have RSD. Six years ago, I had a complete thoracic sympathectomy to cut the nerves and hence stop the pain signals from reaching my brain. Unfortunately, the surgery was performed almost a year after I was diagnosed. My brain had "memorized" the pain signals and even though the nerves were cut, the surgery was deamed a failure. However, it was not without life altering changes. I no longer sweat from my waist up on the right side (the side affected with RSD) which at the time of surgery, I thought...no problem, I can sweat on the opposite side. What I didn't understand was how MUCH my left side would sweat, where as the right side is completely dry. I can go from having dry hair to having half my head soaked, half my face bright red and the opposite side pale white, and my left arm and hand dripping with sweat. I WOULD NEVER RECOMMEND ANYONE UNDER GO SURGERY TO HAVE THE NERVES CUT. It only compounds the symptoms of RSD. Also, from first hand experience, having any surgery after a diagnosis of RSD will likely lead to the RSD "attacking" the surgical site. Seek out true pain specialists, in a university setting if possible. Hope this information is helpful.

[Christy medical journey]

Originally Posted by jmking

Very sorry to here that she's suffering so much. I'm no doctor but I will say that evasive procedures such as cutting off nerves is a very bad idea. I've read and been told that in most cases this can cause other severe issues such as spreading of the disease and no relief in pain. At the least she could try a nerve block (not remove) that in most cases can give temporary relief. She should look at Ketamine treatments too. RSD effects people differently so lidocaine and ketamine can work for her or maybe not. I once talked to a lady who had RSD for 30 years and Ketamine allowed her to stand and walk without much pain after several years in a wheelchair. She should look into spinal stimulators and morphine pumps but they are evasive and may or may not work. My wife declined those and every other evasive treatment except for the infusions because their outlook is so promising. Physical therapy is something your daughter should look into. She can not let her body stay still and do nothing, she needs to move around, very important! Water at body temperature may help her also. One thing I've learned through the years there is a link between the symptom "Phantom Pain" and RSD. Phantom pain is a real condition where people who have had limbs removed still feel pain in their missing limb and still feel the presence of their missing limb. This is one of many reasons not to have the nerves cut out of a person suffering from RSD--this is a bad procedure for any doctor to recommend to an RSD patient and it tells me this doctor does not know what they are talking about. As far as pain meds are concerned, different opiates effect different people differently. My wife takes several meds including muscles relaxants, drugs that relax the nervous system. She did take morphine and percocet but it did not help much. What she found that helps her the most are vicodin and timed released oxicodine.

Do an extensive search on the web you'll see the same things I've stated. Check out the website and its content I provided in my earlier post. It is the first RSD center in the world and just opened last February. Also, check this site my wife and I are members of. And strive to find a doctor who really and truly understands RSD.
RSDSA :: welcome

Great response and information. I concur completely with what you have explained. Unfortunately, having RSD in the face is very rare and at a time when doctors still thought sympathectomies were benefical, I went through with the surgery. Since that time, they are now, rarely mentioned as a treatment for RSD.

Ketamine is producing promising results, though again, not consistantly. This isn't surprising given no two people respond to RSD the same way. As of yet, Ketamine infusions are not an option in California. Hopefully, someday that will change. The best each RSD patient can do is take a proactive role in your treatment plans. Do not assume what the doctor is telling you is always correct, or the best option for you. Seek multiple opinions whenever possible and research all treatment proposals! Best of luck on the journey through the RSD/CRPS maze.

[justmetwo]

hello, I have CRPS in my right shoulder since 2008, I fell directly on the shoulder socket, I've been on pain meds for 4.5 yrs and now they're weining me off and sending me back to work???, I'm in a lot of pain that I don't think they understand. I was told to NEVER have an injection of anykind in my should or arm because of the CRPS. When I did have a cortisone shot (before I was told that)I thought I was going to die right there and I couldn't move without my shoulder being in intense pain for days! I can understand how you guys feel and I'm thankful I'm not alone or going crazy. I'm desperately looking for a specialists in Oregon though, if anyone knows of a good place to go please let me know, I'm so tired of the pain, just mentally/emotionally/physically exhausted.
thanks