Remission?? Crps/rsd Dreaming!

I have heard a rumor that total remission is possible with CRPS/rsd. Is that a fantasy the doctors tell you thinking it will keep you mentally in a better place? Is a real possibility? I have never met anyone who has had it disappear after onset but I have heard more than one doctor tell me "It only lasts 6 years on most people", "There aren't any old people I know of with it so you will get better", etc. The hard part is all the people I have met that actually HAVE it have said much the opposite. Not only did it NOT go away, but it progressed over the years or it spread or their pain increased. So ya'll.....this is the site with all the actual sufferers...which is it?? Just want to know the REAL scoop and need to adjust my expectations accordingly. I hope for us all that it's true...but is it? Looking forward to the feedback........
easyloper easyloper
14 Responses Jan 12, 2011

I'm on my way to remission. Ketamine Infusions 4 day.
Warm pool water therapy3-5x a wk
Graded motor imagery
Anti inflammatory diet
Focus and attitude on going into remission from day one.

I would challenge you to change your attitude and focus. I know it can be difficult, but how we think impacts our progress.

Another 12 yr old girl in remission from ketamine infusions.

Google ketamine infusions. 😊

I don't take pain meds orally. Refuse to.

Keep the faith 😊. U can do this!!!

I have CRPS TYPE 2 and for a few years it seemed to ease up but I have never been pain free. Recently I have been under a great deal of stress assistng a friend with cancer and now my pain is off the charts!!!! I spoke with my doctor who said that the "remission" I was in is now over. I never had complete pain relief or use of my right arm. My diagnosis occured 16 years ago after wrist surgery where the sergeon severed the sympathetic nerve in my wrist. It took 8 months to get a diagnosis because the doctor kept telling me the pain was "in my head"!!! I finally saw a doctor whotold me I had CRPS/RSDS and sent me to a pain clinic. I underwent years of treatments experimental treatments with some relief. I also tried accupuncture, meditation and massage therapy, physical therapy and occupational therapy with limited results. Finally after bone scans and Mri's showed osteoporosis and central nervous system changes I was told that there was nothing more that could be done for me but treatment with medications. I also had a tens unit for a few years. I am frustrated because recently my symptoms have worsened ten fold!!!! I feel worse than I remember from 16 years ago when this all started!!!! If anyone has any suggestions for me would be greatful!!

I have had rsd/crps since 1997. i hade a work r4elated injury and surgery on my right wrist. The pain spread to my entire arm, shouder and back. My surgeon didn't believe me about the pain so I was not treated quickley. It took almost a year for a diagnosis of crps/rsd type 2/3!! I have gone in and out of remission anf try really hard to manage my pain with mind over matter and otc meds but I have recently begun having severe pain again and am not looking forward to going back on pain meds. I had a sympathectomy but, because of the delay in my diagnosis it hasn't helped much. I have also tried nerostimulators with limited success, epidural implants and topical pain relieving ointments. If I'm in remission these will help reduce my pain but it NEVER goes away!!!! I recently had spinal surgery because of the spread of pain in to my lower back and continue to notice it's spread into other parts of my body. I keep hoping for a cure but, I doubt that will ever happen. I hope this helps out with some of the actual sufferers out there. I wish that doctors had known more about this problem when I was first diagnosed maybe my outcome would have been better. I pray that this helps others and I hope you have better luck with diagnosis and treatment

Ive had it 12yrs but ive been told remission is the rare my four specialist have told me that many get diagnosed with rsd when it is actually fibro..and that can go into remission the two share similarites yes,but they come from two different roots rsd spreads to newly injuried places as well as old or new surgeries .,fibro doesnt

Hi, total remission in possible. My onset was due to a broken bone in my leg, and the pain spread into most areas of my body. I was bed-ridden/wheelchair-ridden. My body could barley move because I was in so much pain. Nerve blocks, medication and other treatments did not help. A chronic pain doctor referred me to hypnotherapy, which really helped ease my pain. Though this is not was directly caused complete remission, it temporarily soothed the symptoms and gave me a new outlook on my condition and life. Then, through prayer, I was healed. I've been in complete remission for seven years. I realize that you are on your own RSD/CRPS journey, but I encourage you to hope for complete remission. Giving up on this hope may be giving up your body's ability to heal. Be open to various treatment options, such as music therapy, and keep hoping. Your body is unique, and I trust that there is a unique treatment option that could help soothe your pain. I am a living testament that full remission in possible!

AMEN !!! I am RSD free for 15 years and yes i did have it,It was the most awful thing anyone should have to go through. Thanks to my moms prayers the LORD Healed me too.


Yay!!!!!!! 🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉

Diagnosed in 2000, after a work injury (crushed right hand wrist area) Spread to the right leg after a test ordered by workers comp Dr. Now almost total body. Pain is much worse Narcotics don't work anymore, they do more harm! Remission is possible if caught early, but even a flu or a simple re-injury may bring it back.

Dx with RSD in 2010 after surgery. It was recognized and tx quickly with meds, PT and nerve blocks. Been in remission since last summer( very little pain here and there). For the last two days while traveling, I noticed the cold sensation in my toes and pins and needles. So, im a lil nervouse right now, but im grateful for the 1 year of Serenity. I will f/u with my pain doctor and start my nerve blocks again. I was fortunate to have caught it in stage 1 with limited damage to my left leg.

I had a hip replacement in July of 2011. I noticed that my left foot wouldn't flex and I had a tough time in the hospital with mobility, plus the hip had to heal. When I came home, I had the most excruciating pain I had ever experienced in my whole life. I thought it was normal; the nerves regenerating from the surgery. It culminated in my daughter taking me to the ER one day. They gave me a shot of dilaudid, which did the trick with the pain. I saw the surgeon shortly after that and he referred me to the pain specialist. He did some sort of a nerve block in my back and that helped tremendously. Now I take Neurontin every day and I'm much better. That nerve block can always be repeated, too. The key is to get diagnosed and treated early. My surgeon said 3 months is the window; I've heard it's six months. Maybe this would work for you. I hope so.

I have CRPS and have for several years it started in BOTH hands and arms which is rare. I don't know how long before it was diagnosed. It's now moving into my feet & legs. My Dr. tells me it doesn't move.I however am very aware of the symptoms and know that the shooting pains is the start. It also took the hearing in one ear OVERNIGHT. I WOKE UP AND IT WAS GONE, he also told me that CRPS couldn't do that. The sad part for all of us is take we know more than the Doctors do, or like my Doctor needs to update his information. I have read many people say that it went to vital organs. I don't know much about that, but the one thing that make CRPS so different is the pain levels. I've heard people say it's like pouring gas on your skin and lighting it. For me I feel like me effected area has been put into a vise and been crushed, and it's like phantom pain without losing a limb.I stopped sleeping more than 15 mins. at a time because of the pain. I found my disease online [under excruciating pain] because the Dr.'s weren't hearing how much pain I was in and I'm hoping to find people who are in remission and what they did to accomplish it.. Pain medication has made my life bearable but when I hear of people who have had CRPS and are recovering and doing great things I can't imagine it. I do good to get thur each day and have very little energy. Good luck to everyone out there with CRPS and I hope you all get better and have a wonderful life.

I've had 20 yrs with RSD it DOES go in & out of remission !! Hasn't gone away but the happier I got the pain just decreases. Water therapy, laughter till you have tears & my dogs & living in warm weather. Drugs just prozac 10 mg a day & ibuprofen as needed, lots of stretching Move it or lose it. I'm stage 4. Never lose faith there is mind over matter. I had days in HELL & when they come I bunker down in a soft bed & sleep.

I have heard the stimulator from several people that had it surgically implanted worked for about 2 years then didn't. I had a trial where they put it in me for 7 days and 15 mins. before I seen the doctor after the trial they finally got it in the right spot. I am not a fan of getting this. My Doctor said "SOME" people wake up one day and it is gone..... I have been "surfeiting" since 6/24/08 many drugs depression and not help unless I am so sedated I don't know if I am coming or going.

Who and where is the doc that did your procedure?? I would go anywhere!

I just got forwarded to a specialist at OHSU and also a doctor at St. Judes just did a pre-surgery trial discussion with me. He said that spinal neurostimulators helps thousands of people with RSD/CRPS and that I am a good candidate. I will go through a trial to see if it works for me before they do anything invasive. I swore I would wait for something more "cutting edge" but my life is passing me by while I wait, so I will see what there is to see. He said 8 out of 10 people it helps. They consider "helping" to be a pain decrease of 50% or more. I think I could live with that. I am being more physical despite the pain because I feel like if I don't I won't have lived my life at all! I am much older than you obviously, but I still have many goals and dreams of things to do...from as simple as being able to travel (even if it's with a scooter) to going back to jumping again (I am an avid horseperson). It's my left foot and after three years it has taken a NASTY upspike in pain and started spreading just in the last couple months. Scary....very, very scary. The future is a scary thing with this syndrome......thank you so much for your feedback. First I've ever heard of such a procedure. I know they don't do anything like it here....what part of the country are you in?

First off whoever your doctors are they are morons, RSD doesn't simply go away, they maybe telling you that because they have their heads so far up their a*** that they don't know how to help you and they want to give you some hope. You need to find new docs who care and are trying new treatments, find some experimental treatments that are on the cutting edge and not become just ok with popping your pain meds day in day out hoping something comes along and changes the pain for you. Its hard and there are a lot and i mean a ton of docs out there who don't care or only see you as a paycheck, in all the years ive had RSD ive gone through any pain doc with a reputation in my state, and even some who hadn't developed one yet. But i have never heard of RSD going away on its own, but that doesn't mean remission isn't possible i have been in remission.<br />
I was diagnosed with RSD when i was 16, there was an amazing children's hospital trial that they were running that i got into a year or so later that used a combination of Ketamine into an iv and a epidural nerve block in the lower back spinal cord (into a nerve, low because i am afflicted starting in my left leg). I was in the hospital for 5 days and for the first few of those days i was completely paralyzed from the waist down, i could not feel anything at all was truly amazing which sounds odd but it was the first relief from my pain i had had, then it was terrifying once i couldn't move. Over the period of the week that i was in there they slowly lifted the drugs and then put me into a physical therapy workout, and by the last day i was running outside, which may not seem significant but walking causes excruciating pain, every step seems worse than the last. The pain was gone and after i went home it stayed gone, then within a month or so i had a bad few hours that hit me which compared to what i was living with was nothing, and that bad hours turned sometime to a bad day that would hit maybe twice a month, i was in heaven pain only twice a month i had my life back. It was a hard transition back to real life and reality but i loved every pain free minute of it. However the warning from day one to me was "ANY injury could/would bring my RSD out of remission". I lived a couple years in remission, turned out to be a little over three; with so many years gone i had started to become bold and playing sports with friends, one of the things that i missed the most as well as going to the gym and working out (would run for miles on the treadmill, something i didn't know if i would ever get to do again). Looking back now i was stupid to ever take the risk, my RSD is back now, but it wasn't because of the sports or those risks but something that cannot be foreseen or prevented. I had a very weak ankle from all of the losses my leg had suffered and took a tumble down the stairs which brought back my RSD. I tried to find the doctor who performed the treatment that put me in remission but he had moved out of state and eventually found another doc to try and duplicate the procedure but it didn't work and so i am struggling to find something else to help me and possibly put me back in remission. SO it is possible and i will say don't be stupid and risk it, but you want to live life again and as more time passes you become bolder and bolder, just if you ever do get in remission please be careful. And keep fighting, there are people out there who can help just keep looking for the ones who do care and don't get stuck on a doc who sees you as a paycheck.

I traveled for my ketamine infusions.