I've been scouring the pages of the net trying to find an answer to a somewhat dicey question. What percentage of patient's diagnosed with RSD ever get "cured?" How many are able to go back to their original job? Is it even worth it for me to do all of that "desensitization" at home, keep up my PT at home because I can't even afford the copay, take all of these drugs and do all of these procedures when it really is "never going to happen?" I'm really early in my diagnosis, and everyone says that those have the best chance (diagnosed 10/18/08). But what does that really mean? This is so very disillusioning to me-maybe made worse from the holidays, maybe not. Maybe I'm just depressed more than previously. I am just so deeply unhappy and angry. Anyone actually know what the chances are?
Lori Lee

Hi Lori Lee

I am so sorry to see that you are struggling with the diagnosis and what it means for you. There are no statistics for remission. I have looked extensively for these and there is nothing of any value available out there. One UK charity used to quote 50% remission but this figure was never substantiated with any reference source or back-up and I have never found any data with remission figures. I suspect it was based on one person's rough estimate of what they thought from their own experience which is clearly not a reputable enough source.

The fear and anger and depression is all normal but it doesn't mean that you shouldn't get help for it. Please seek medical help to come to terms with your situation because you sound desperately unhappy. All of that will be massively increasing the pain levels you are feeling because of the way the pain mechanisms in the body work. By increasing that pain now through anger which is a useless emotion in this context, you are making the healing process more difficult for your body.

Give yourself a break - find a way to accept that this has happened and there is no point in being angry about it, get sleep, exercise as much as you can, do all the stuff that is recommended out there for mobilising and recovering your affected limb and try to normalise at least some parts of your life.

All the things you are doing are the right things to do. None of it is wasted. You have got to give yourself the best possible chance of that remission. Try and imagine how you would feel in future if you had to live with yourself knowing that you had given up trying at this early stage? You have the chance to influence your life for a positive outcome - you can't give up and stop trying purely because you might not succeed.

Yesterday, I asked my physio how long it takes for the pain to go away for the people who seem to get a remission (he has treated several people with CRPS) and he said that it is generally a couple of years. This is based on hard work in spite of the pain to keep the limb moving and active, doing the prescribed exercises and ensuring that it isn't allowed to become more sensitized. It takes time and you need to re-set your expectations of how quickly you might see an improvement.

Whatever you do, you need to get emotional support soon because you sound as though you are struggling. You can get through this but you might need more help just now. Try and take things a day at a time, don't think about the bigger picture or tomorrow or what might happen in the future. Your body and mind are not ready to face that yet. Just concentrate and focus on today and what you need to do to get through the day. It will get easier.

I have gone back to my original job. I am a senior legal director in a big manufacturing company so I have a demanding role. I was diagnosed in January 2008 after I had had CRPS for about 5 months. Its really tough going sometimes but I manage. There is hope but you need to push yourself and not give up. It can be done. I don't know what the future will bring but I am doing OK at the moment and that is what matters most.

I wish you well.

I cannot thank you enough for responding to my post. You're right-I'm in a bad place right now. For the last five years, a group of girlfriends and I would go to Vail skiing for a week-no husbands/boyfriends-just skiing by day, massages and going out to eat in the evening, followed by smores and beverages around the fire. This is the first year that I cannot go and I am really taking it badly. I am also having tremendous financial diffidulties as I am the primary breadwinner and the insurance companies are driving me into debt every month. I am a neuro ICU nurse and have been in some type of ER/ICU setting for 15 years. I love it and just finished my last class before going on to get my nurse practitioner degree. All of this feels like it's going down the drain and I am in a panic. Maybe it's the type A personality and the ICU nurse mentality of "I want it now-everything has to be now" and I cannot come to grips that this thing could ruin all I've worked for. My 3 year old wants to go snow tubing and can't understand why I can't take him and I promised my 9 year old I would teach him to ski this year. Now I can't even stay outside for any amount of time due to the cold, much less any activity. My knee was operated on 10/15 and that was the parcipitating event, so it's still weak in it's own right outside of the RSD. I guess I just need someone to give me answers that don't exist. I need a light at the end of this tunnel. My PMR (physio) is attempting to drug me to the limit and I keep telling him that these are appropriate emotions, not something irrational; being a nurse it turns into a big fight because I won't let him do anything without evidence (no "well, let's see if this works stuff"). There is also a legal issue as he feels that inadequate anesthesia for the operation was the cause of the RSD, leaving my sympathetic nervous system overwhelmed during surgery.
This is probably normal process for this; I am just freaking out because everything seems to be progressively worsening and I don't see improvement (which may actually be there-I do most of my walking without crutches and have good range of motion, it's just the pain issue and the drugs that have changed my entire personality.)
Anyway, bless you for letting me purge the system. Strange how someone unknown can give comfort when those near don't understand. Thank you-more than I can express.
Lori Lee

I'm sorry that you are dealing with all of this at the moment and really hope that things get better for you soon. I remember when I was first diagnosed with RSD and it was SO hard and I was really frustrated and confused and didn't know what to do.

I agree with what GymJunkie said that unfortunately, there is no research out there stating what the chances of going into the remission are. I have looked all over the internet and cannot find anything, I have spoken to my doctor and asked him what my chance of going into remission is and all I ever get is "I don't know", I was so confused and frustrated as I couldn't understand how he could give me the RSD diagnosis but didn't know how to treat my case or whether I would go into remission or not.

The only things I can find on the internet about remission is that the best chance of RSD going into remission is if your RSD is caught within the first 3 months or if you are a child because childrens brains can heal in time. You are really lucky that you have been diagnosed pretty fast as that will hopefully help you and you will be able to begin a treatment that will help you and take some of the pain away.

I agree with what GymJunkie said also about the feelings you are having being completely normal but please seek help for them if they do not get any better. You shouldn't have to deal with all of this if you don't have to. I feel depressed quite a lot but it has gotten somewhat better. When I was first diagnosed with RSD, I wouldn't talk to anyone at all but I have now come out of my shell somewhat and am not afraid to tell my doctor if I don't agree with something that he suggests.

I hope you feel better soon and I am keeping you in my thoughts and prayers. I will keep continuing to look on the internet to see if I can find any articles about remission in RSD and if I do, I shall post them. If you ever need someone to talk to, please know that I am here for you.

Hi Lori Lee,

Gymjunkie is so right...there is hope.

The physiotherapist at the pain management program in my hospital has been very encouraged lately. Recently she told me that now that they have the orthopedic surgeons educated about RSD the surgeons are sending patients earlier and the pain team is able to treat them. She sees numerous RSD patients year round, I think that RSD is all she treats now. I see doctors coming up from ER to speak with her about how to get patients in for treatment early.

She tells me that there are many patients she has treated who are in remission and doing very well. No studies or statistic to back this up but I know how dedicated she is to rsd patients and I completely trust her professional opinion.

It is really important that you get the emotional help you need to assist you through this phase, especially as you grapple with the issues of work, insurance, family, children, grief and loss. It is a lot to handle on your own as you try to get better and the stress of the holidays don't help either.

I think that most of us on here have had this for a long time, in most cases we did not receive the appropriate treatment early enough as it was in my case. Despite that I'm looking at going back to work in the New Year after we get settled into our new home.

Wishing you and your family well.

Don't give up.

This is the best chance right now. Something just might work and it often does. Later on the problem would probably be intractible and it would be even more important to come to terms with it.

Best wishes.

Lori Lee
I am glad you got something helpful from my post. I have been exactly where you are so I know precisely how you are feeling. If you don't already have an anti-depressant in your drug cocktail, I recommend that you give it serious consideration. I had excellent results with duloxetine (cymbalta) in terms of pain management but it also helped my mood when I was really struggling. The side effects were not as debilitating as might be experienced with some of the older anti-dep medications, especially the tri-cyclics.

You need to think of this as a long journey and not a sprint so don't dismiss taking yet more medication which could get you through the early, tough points. It needn't be for ever - it may be something you take for a short-to-medium term period and then you can wean off it later as you improve either physially or mentally. It is key though to get your mood and pain under control asap - that has got to be your priority and after that you can start to slowly rebuild things as and when you feel up to it.

You must see people coming through ICU with horrific injuries and illnesses - you know that the time they are with you is just the start of their recovery and rehab journey. You wouldn't advise them to try and cope with what has happened to them in a couple of months so why should you be any different?

I too am saddled with the burden of the Type-A personality!! You have to realise that it won't help to keep wanting to get answers and then get fixed tomorrow. It doesn't work that way. The Type-A black and white, deal with it and move on, lack of patience stuff doesn't help on the CRPS acceptance journey. Your Type-A personality will come into its own though by giving you the determination to fight through the pain and to keep going when others might give up. It will give you strength to keep going when you don't think you can.

I was still trying to struggle through my achilles rehab at the point you are at. I hadn't been diagnosed and I felt that everyone must think I just wasn't trying hard enough. It was terrible. My physio rapidly realised something was wrong and after 6/7 weeks I got my diagnosis. In some ways it was good when I didn't know - I just kept pushing on with the rehab even though it was agony and I wasn't making the progress that I should have done. Getting my ankle moving and getting a sock and shoe on (standing over the sink vomiting with the pain) has stood me in good stead for later.

I later found another physio who had treated CRPS and just as things were starting to look brighter, I developed a severe movement disorder which is the most disabling feature of the symptoms for me. My pain has changed and subsided over the last 16 months - partly time, partly walking, partly mood and partly drugs. I have a bit of spread to my other ankle and foot but it isn't too bad pain wise. I have awful neuro pain in both hands and arms but I think it is probably carpal tunnel syndrome from crutch and wheelchair use rather than CRPS spread - it remains to be seen.

I have had ups and downs over my journey and I am terrified that I am currently about to have another spell of mood bleakness - I'd rather have the pain than the depression. All I can do is try my best, recognise when it starts to get bad and try to ask for help before it gets too bad. I have been lucky not to have the added stress of children or money worries but I am sure that you and your family will get through these tough times. They will continue to love you and wish for the best for you. Accept their help and use that Type-A personality for all it is worth!!

Cannot remember where I saw this at but the statistics I have seen was 3months to 1 year 80% chance of remission. 1-2 years 65% chance. 2-3 years 45% chance. 3-4 years 40% chance. 5+ very little to almost no chance of remission. I could be a little off on the numbers just trying to work off memory, and that isn't the easiest thing in the world anymore.

Lori Lee,

Don't give up, don't EVER give up! I am 3+ years into this and had just about given up figuring I'd spend the rest of my life like this. But I found a wonderful doctor here in Tampa, FL who has put me into remission with just a series of 3 blocks that were administered the RIGHT way - not the way that the doctors did more than 2 years ago. You are early into this and I know how hard it can be during the holidays, but you have an EXCELLENT chance at getting this thing into remission!! But you have to become your own advocate and drive your own treatment program - that's your new job and as an ICU nurse you'll be EXCELLENT at it. You just have to focus your mind and take control here - YOU CAN DO IT!!!

Feel free to PM me if you like.

Jan

Hi Lori Lee,

I can 'hear' yoru pain and depression in your words. When a major change or loss happens in our life our reaction to it can last for various lengths of time. When my parents died at a young age, I just couldn't adjust, so found a wonderful counselor to help me thru. Then when I couldn't adjust to RSD, again I found a psychiatrist to help me thru that awful deep depression. I sense that is where you are now. The depression isn't just the loss and change, but there is a physical change in our brain, called the Limbic system. It is altered by the RSD and causes the depression. I've been seeing my pschy. for 4-5 years now. Cymbalta is working well for me. low dose 60 mg. What has helped most is my determination to fight and keep a calm system, which in turn is less pain. i troy to look at things is a positive, grateful way. Terrible things happen to wonderful peoplle,and it is so encouraging to see them do well. I went thru a very low low time too, but I try to call friends to encourage them, love flowers in the house, scented candles, scented lotions, and scrubs, polish my nails, exercise, swim, play with my kitty, watch a funny movie, look at old photo albums of family vacations, write letters to family and friends. It's tough. I also miss snow skiing. my daughter and I and our friends made many fun trips in Oregon. Mt Batchelor, Mt Hood. My husband would come too a couple times a year and would have the fire going when we got home. We had a ski boat and water skied a lot-ten minutes from the house. My daughter and I played tennis about 5 days a week. So much fun. We traveled as a family several times a year. self-employed

Like yourself, my RSD came the day following surgery. swollen arm, then frozen shoulder. It took months of therapy to get range of motion back, then went to the other shoulder. more pt I think our daughter was about 17. I don't say this to discourage you, but shortly after the second frozen shoulder, I was water skiing and my hand was frozen. Misdiagnosedd with RA flew back to Oregon and diagnosed RSD. We had moved to Arizona for college, went thru therapy to get most of hand back. Never regret all the painful therapy. now can use both arms and most of left hand. I have full body RSD 12 years now. In between the two frozen shoulders we went to Europe twice. which was grateful for. As it spread, I was very limited and had to stop traveling. I'm hoping to start up again. So don't give up please Journel if you need to, or reach out to us on the forum so we can encourage you. Choose carefully, whom you speak with about your RSD. Many people or friends care, but some tend to withdraw witih discussions of illness and such. I assume you know what journeling is, writing down your true feelings, without reservations, then burn it if you need to

This can be a serious disorder. I almost died when blood pressure dropped to 60/40 was going to go to Maui the next day, but ended up in ICU instead. The last couple days have had low blood pressure again. It is caused by the para sympathetic nervous system. the sympathetic nervous system cause high blood pressure. I'm on two different meds for that.I take Lorazepm 2 mg. for anti-anxiety 3x day to keep calm. Vicodin for pain. Was on 3200 neurotin and then lyrica and now down to 100 mg. lyrica. Hope to go off soon.So far no electric shocks, jolts, spasms, etc I feel I'm progressing, I stretch and have full use of arms and feet andall of right hand and partial left hand. I did have problemds with toes curling, but Dr. gave me exercising while swimming and got the toes to touch the ground again.

Financially, we have spent a love of savings, but our daughter and son in law thru college.I can't work much. memoroy is bad. We own a coffee company, We bought it when we moved to AZ. thripled it, but then health went down. I guess what I'm trying to say is, you may want to think about the statuate of limitations on filing for damages.

I didn't file on my breast surgery, and next day my shoulder was frozen. 100 treatments. plus I paid for 100 massage therapy. the ovef to other shoulder, Our insurance paid for treatment and I paid for Massage therapy. I did the desensitizing at home too. and am GLAD I did! Between the two shoulders we went to Greece and also a 7 day cruise thru the greek islands. WONDERFUL I'm so glad I did the time and pain The wonderful memories with friends and family. Then our daughters wedding. So fun. I know for sure, the stretching exercising swimming kept me moving and had the joy. Please keep trying.

My husband has interviewed two men to go out and sell coffee. I can't do that anymore. If they can, maybe I can get some HBOT treatment.the 100)% oxygen and the the oxygen toends of arms and legs.I would be so gratefultomore and have more energy

On our bad and painful days, it's hard not give up and just stay in bed, but I want to help others ah travel more.

I guess one more thing I want to say to you Lora Lee is, if you feel you have a case on your surgery, it's worth a visit to an attorney and see if you have a case. It's unbelieveable how much allthese medical bills cost and therapy. If there was neglicence, you deserve commensation. If it is something you are going to pursue, sometimes, it's best to go out of town and keep it quiet.

My father pursued my mothers death and was 100% settlement

I had very good evidence for my surgeons blunders, but decided not to pursue due to emotional costs Medical costs are unbelievable and keep going up, so you need to decide on that are of your life......Hope all works out well. and goes wellfor you. I truly underand the loss of physical sports. I loved itSwimming is so great, water auerobics, Please know I think of you often and hope you continue to stregthen yoursel

Our daughter and son in law just moved in with us.He is a American Airline Pilot and just moved backfrom chicago I'm doing so much better here thatn in Oregon Please let us know how you are doing? I'm checking into the HBOT treatment and will let you know whenI find out more. Take care, Loretta Jewell