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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-28-2006, 09:52 AM   #1
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heebejeebe HB User
Does RSD ever really get better, go away, disappear?

I have had RSD for almost 1 1/2 years. My right arm is affected, with the worst being in the wrist and most of all, the entire hand. Some fingers are worse than others. I don't know if this is "normal" for RSD or not.

True to what seems to be the usual pattern, I was mis-diagnosed by 3 different primary care-type doctors and an orthopedic specialist. Luckily though, only a few months after injury, I was properly diagnosed.

Pain blocks were done by a PM doctor, and they helped for about 8 months. After that, I descended into pain from hell once again. Medications have included Lyrica (no help), Topomax (no help), Neurontin (iffy), Ultram (no help), Hydrocodone (helps), and Fentanyl (helps).

Each doctor has told me some version of, "RSD sometimes gets better on it's own and goes away." I really hate having my hopes built up like this. When I try to pin the doctor down as to whether he has had a patient under his care that has experienced RSD "going away," it always turns out to be more like the "...friend of a friend who knows a doctor in another city..."

Does anyone here know of any cases of RSD that have improved to the point of "going away?" With the exception of 2 doctors that have treated me, I have ended up finding out that none of the others have even had a patient with RSD.

The Fentanyl patches do work well enough that sometimes, in the first 2 days of a 3-day patch, I find myself hoping that maybe I am getting better, that the RSD is going away. By the 3rd day, the burning is again strong enough, the tremendous pain is again there to remind me that I still have this disease (is this a disease...or a condition?).

The hydrocodone works well for the breakthrough pain. There is also pain in the shoulder from the injury, but the shoulder can not be repaired due to the risk of making the RSD much worse (so I have been told).

Anyone have or know of any true, real successes? The pain blocks were very effective sometimes, and other shots made barely any difference at all. For now, the fentanyl patches and hydrocodone have been the most effective. The PM doc gave me info on a stimulation unit, but after playing 20 questions with the rep, the rep finally admitted that his company had no real success with positioning their unit for effective upper limb relief in RSD.

 
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Old 09-28-2006, 04:59 PM   #2
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Re: Does RSD ever really get better, go away, disappear?

In 2001, I had 3 stress fractures in my foot that quickly turned into RSD. Some doctors thought it was RSD, a couple not. (in hindsight those were the couple doctors who did not know much about RSD.) I ended up at a Rheumatologist to be tested for Lupus, which I did not have, but she diagnosed me with myofacial pain syndrome in other parts of my body which I had for 30 years but no one had been able to diagnose. (Finally some help for that!)

Anyway, she began treating the symptoms of the foot pain along with the myofacial pain... with Topomax, mycalcin nasal spray, flexeril, ultram and on and off rounds of cortisone (sp?) bursts. She was one of the doctors who suspected RSD. Anyway, with time, and gradually beginning to bear weight again, and use it again it did indeed get better. It took over 4 years. But, if I treated it with respect - I was nearly 100% pain free. If I stood on concrete for long hours, or did a lot of driving (affected foot) it would ache again. But, in general, I would say it was in remission. I got to the point where I could once again enjoy my hobby of going for long walks at a nearby nature preserve where the terrain is very rough and uneven and very hilly - and I mean walks of 4 hours.

Then I injured my shoulder, and by the end of that day, RSD set in. I swear it happened that fast. It took a couple weeks for the coldness and some of the other symptoms, but the extreme pain came right away.

About 2 months after that --- the pain returned at about 50% in my foot. It has not changed color or temperature though - just pain returned. It was controlled again though, by starting the mycalcin spray. The spray has not helped my other RSD pain - which is odd. Why it helps the old area and not the new?? Unless it does help, but the new area is so much worse, it is hard to tell it as much.

So --- I believe if I had not injured myself again... my foot would still be in remission. BUT, I also think that once I had RSD, I had it. It was lurking waiting to come out again at the next injury - however I had other injuries after breaking my foot that it did not attack. My RSD is genetically linked. Perhaps that makes a difference.

I am an avid gardener. I am in a gardening "club" online where there are about 2000 members worldwide. In that group, there are 4 people who have RSD or have had it. In two people, it went away within a couple years, more or less on it's own, more than 10 years ago, and has never returned, even though they have injured themselves, had surgeries, car accidents, you name it.

My family doctor has 2 other people in her practice with it. It lasted about 2 years with each of them, and has been gone for more than 10 years in both of them, before they were in her practice. They are now (1) middle aged and (1) elderly -- I am the first "active" RSDer she has seen, and also the first one who is spreading. She is very frustrated by it. But-- I know it went away last time --- so I have faith that it can go away this time.

So YES... there is hope of it going away.

jules

 
Old 09-28-2006, 06:54 PM   #3
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heebejeebe HB User
Re: Does RSD ever really get better, go away, disappear?

Thank you so much, daylilyfan! One thing you mentioned as to respecting the area with the RSD has consumed me...if anything comes neare my shoulder, hand, elbow, etc., I jump away. Even with the relief from the fentanyl patches, it is not at all 100% relief, and I just don't want to chance making it worse.

I use the limb as much as possible, but not to the extent that it about drops me to the ground. The shoulder injury can do that, it seems like the RSD makes any pain in that area many times worse than it would be alone. Same for the arthritis, the joints are worse, I think, because of the RSD.

I try hard to remain positive, not that anyone else is not, but maybe I am still in the denial stage. It has not gotten any better since I was injured a year and-a-half ago. The RSD came on quickly for me, too, so I know it can "hit" as fast as you said. Problem was, I was in the hospital, and my PCP never mentioned RSD or treated me for it. No other doctor I saw for the long time I was in the hospital ever mentioned anything about RSD either, so my treatment never changed. The only real relief I ever got was when I myself decided that ice would be effective, so I had the nurse make some icepacks for me. The icepacks really helped extinguish the burning pretty well, but I had to keep the hand and arm iced all the time.

To be painfully honest, I am scared to death. Scared that I will get injured again in another area and RSD will move to that area too. The net effect is that besides the intense burning and pain and loss of tactile, useful feeling in my hand and fingers, and the loss of movement in the entire arm, the RSD causes me to not push myself and do maybe more than I could as far as movement. I am too scared of making it worse in my arm and hand, or helping the RSD to move-in and set up house in my other arm, legs, or wherever.

I try not to feel sorry for myself, and reading the posts here, most folks have RSD much worse than I do, I just don't know what to do. I live alone, not married, and my kids are grown and live far away. I have been unable to work, but I can get around enough to get to my doctor appointments, shop for groceries, get my prescriptions, etc. After doing just what I would have thought before was minimal effort in a rather "short" day, I am exhausted! I tend to think it is from using so much energy to fight the pain the patches don't cover, and especially the fast, sharp, crippling pain in my shoulder when I move it.

I am new to the forums here, and I am reading alot and finding out there is so much I don't know. You know what is really scary? My docs all have told me that I know much more than them about RSD, and I barely know anything! Sometimes, I am just afraid to know more, because of how bad it is for some, but I must know. Not just for myself, but if this ever does go away, I hope that I coud contribute to science to help find a cure. Wishful thinking, huh?

 
Old 09-28-2006, 07:31 PM   #4
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sharon1030 HB User
Smile Re: Does RSD ever really get better, go away, disappear?

Hi,

I just wanted to say "hi" and welcome you to the board. I know of one person whose RSD went into remission. She had a ton of blocks and her RSD was caught early. Who knows? I've been dealing with this for 20 years and I've finally accepted that this is a permanent thing, but it has taken time to get to this point....having docs tell me that it would go away and that they didn't know of anyone who had had it for more than 10 years didn't help me with that acceptance process. It's a tough thing to deal with. I've been dealing with this for more than half my life so I don't remember much of my life pre-RSD and it was still hard to get to this acceptance stage. I would imagine that it would be harder for people who get this later in life. Hang in there and keep coming to the boards.

Sharon

 
Old 09-28-2006, 09:37 PM   #5
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heebejeebe HB User
Re: Does RSD ever really get better, go away, disappear?

Wow, more than 20 years. Let me ask you, how did you make it through the many years that RSD was not really looked upon as a real disease? It is hard enough today with doctors that barely know what RSD stands for, let alone proper treatments. My first PCP told me he did not "buy in to the RSD thing" and that there were many other things it could be. Funny thing is, he could never name one "thing" that my symptoms point to and other doctors diagnose other than RSD.

It really puzzles me as to why a doctor would continue to muddy the waters when other doctors say it is the most classic case of RSD they have ever seen. How do you find the energy to keep fighting?

You don't need to answer that if you don't want to, I am just curious though as to how others keep going day to day. I had never heard of RSD before I was diagnosed with this.

I must have looked really dumb when the spaecialist told me last year, "This looks like it must be RSD." I was clueless. I am learning more with my research, and trying to get up to speed with all of the benefits here on the boards. I have visited many times, and recently felt it would be better to join so I could ask questions and learn more.

 
Old 09-29-2006, 01:58 PM   #6
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LeftyKid HB User
Re: Does RSD ever really get better, go away, disappear?

Hebejeebe,

Great post - thanks for starting this thread - great advice here.
I so understand where you are right now. They are your words, but I swear I could have written them!:
"I try not to feel sorry for myself, and reading the posts here, most folks have RSD much worse than I do, I just don't know what to do. ... I have been unable to work, but I can get around enough to get to my doctor appointments, shop for groceries, get my prescriptions, etc. After doing just what I would have thought before was minimal effort in a rather "short" day, I am exhausted! I tend to think it is from using so much energy to fight the pain the patches don't cover, and especially the fast, sharp, crippling pain in my shoulder when I move it....
My docs all have told me that I know much more than them about RSD, and I barely know anything! Sometimes, I am just afraid to know more, because of how bad it is for some, but I must know. Not just for myself, but if this ever does go away, I hope that I coud contribute to science to help find a cure. Wishful thinking, huh?"
It's NOT wishful thinking. Who knows more about a strange disorder than the patients themselves?

Daylily- I agree that there is hope of it "going away". I think of it as "remission" - that it could still return as in your case with the re-injury.

Sharon - You're my hero!
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"Certainly it hurts. The trick... is not MINDING that it hurts."
... - PeterO'Toole as "Lawrence of Arabia"

 
Old 09-29-2006, 07:10 PM   #7
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sharon1030 HB User
Smile Re: Does RSD ever really get better, go away, disappear?

Hi heebejeebe,

First, I have a wonderful family that has helped me through. I know I'm so fortunate to have them as I've read about a lot of other people with RSD who aren't so fortunate.

I feel that over the years that I've had this, there hasn't been much improvement regarding medical professionals and their knowing about RSD. I still get many who look at me with that blank stare and then ask me, "what's that?" when I tell them I have RSD.

I had this for 3 years before I was diagnosed. I went from doc to doc trying to find out what was wrong. I finally went to New York City (I live on Long Island)...to New York Hospital/Hospital for Special Surgery and was diagnosed by a doc there. No doc I went to on Long Island knew what was going on.

So, the combination of my supportive family and my morphine/bupivacaine is working for me to help me deal with this. I try not to dwell on the negative too much, but I know that's hard at times. I've been dealing with chronic illness (have type 1 diabetes as well) since I was 12 so I've had some practice. I guess that helps too . I wish I had some magic words to help alleviate everyone's suffering, but I don't. I just hope that being on this board and supporting people will help as many people as possible and give them the courage to keep fighting. Hang in there.

Lefty, you are too sweet . It's good to see you're still here. I'm glad you replied to the RF thread. When I saw it, I thought of you and wished you would come to talk to that person and you did!

Sharon

 
Old 09-30-2006, 11:53 PM   #8
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Skooze HB User
Re: Does RSD ever really get better, go away, disappear?

Hi heebejeebe--just love that name. Is that what RSD gives you?? just kidding, but after reading the posts here, I guess it would give anyone that.

I know how you feel about your arm and wanting to protect it! Mine started in my left arm in 8/99, and was a wc case, and the doctors kept bickering about which surgery to do first, the shoulder or the neck?? I felt like I was in ping pong game. Bouncing from dr to dr. I was very protective and kept my arm in a fixed position. One dr. suggested I put it in a sling, and another told me that was the worst to do for it next to ice. Ice is a big NoNo It can make the nerves constrict, and though it may feel good at the time, the damage in the long run is the worst. Anyhow the neck surgery won and the dr's prayed it would stop the RSD, but 2 months later it came back with a vengance!

Your meds are not enough to combat the pain. Until I started morphine, (MsCotin) I did not do well at all. The pain drove me to my bed, where even the smell of mood made me ill. I was a single parent raising 2 girls 8 and 13 at the time. It was a chore just to do what you are doing let alone, take care of them. I started a support group for RSD and wc cases and my phone rang off the hook. I was driven to find a way to learn to live with this monster. Met alot of neat people, one who turned me on to her dr. who prescribed the morphine. I also rearched the STS machine, and my girlfriend, Kathy, started treatments on the machine. In 6 months she was out running me. I closed my wc case 1/04 and began treatments on the STS, and after the 3rd night I slept for 8 hours straight for the first time in 5 years. After 10 treatments I could dirve again. I bought the machine and use it almost daily. I have somewhat of alife now. Another friend of mine on another island, says hers is in remission, although she never took any narcotics for 10 years with RSD. She did herbal remedies. I cut my meds from 3o+ a day down to 12 + a day. I think if I used it twice a day that maybe I too, could go into remission, but I have too much on my plate raising my teenagers. I tried working part time and the RSD spread to my lower legs. So that wasn't worth the effort. Acceptance is the key and the motivation to find what works best for you, is the key. I'd like to be like Sharon here; and get a pump that the meds bypas your liver. She has morphine too.

I'm rambling whcih means I'm tired and my hands are giving out typing. But it's Ok tomorrow is another day. I just wanted to say welcome and keep coming back because this it the best site I've found for people in this boat. I also wanted to mention Neurontin, and how horrible it is, but I'll save that for later. I have been reinjured too, and had to go back too laying low, because it inflamed the RSD, just like working made it spread. We have to live each day the best we can and not worry or wonder what IF. Just pray and seek and find what works for YOU> Aloha Skooze

 
Old 10-02-2006, 07:28 AM   #9
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cattys HB User
Re: Does RSD ever really get better, go away, disappear?

Heebejeebe,

Hi, I also Have this monster in my hand and arm, I did go into remission for about 8 months. Then out of the blue the pain came back with a vengence.

I also use my hand as much as possible. My hand has a mind of its own and will hurt when it wants and turns ice cold when it wants. this is just such a strange disorder.

Welcome to the forums everyone here is so friendly and informative.
cattys

 
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