You asked if RSD can spread fast. My half sister had RSD, and as I understand ( we were not close enough for me to know with my own eyes, so my info is 2nd hand ) her RSD went from nothing to full body in just a few months.
The first time I had it, in 2001, it was in my right foot, and it stayed there until it gradually went into remission over 4 years.
In summer of 2005, it started in my left shoulder after it was twisted - it is worse this time. It was localized for a few months, then was back in my right foot where it was in 2001, then once moved to the right shoulder, and now it has started down my back, it seems to be moving pretty fast to me - a few inches a week. It's also made an appearance in my good foot in a small area. So, I am in all four quadrants now, in 14 months from the date of injury with my 2nd round of RSD.
Everything I have read or heard from any doctor is do blocks RIGHT away. I understand every doctor has his own method, but you won't be able to do this over again. You may want to get a second opinion on this. I had two blocks within a month or 6 weeks of my 2nd round of RSD - but they didn't help my pain so we didn't continue. Blocks are not that big of a deal. I don't understand why he would not want to do them now. You can't go back to the beginnning again later on.
Neurontin was no good for me either - I couldn't think correctly, gained 40 lbs in just a few months, had eye pain, muscle pain, so many side effects and no pain relief .... I switched to topomax with no side effects and quite a bit of pain control. But, like Lisa said, that's no reason to not try it or continue it. I just could not take it - for me it was a terrible med. Same with Cymbalta. The side effects, even after 4-5 months of trying it were just awful. It didn't help my pain either. No matter what the books say. But topomax is my life saver.
Everyone is different. None of the info on the big websites mention topomax and I don't understand why. I'm glad that my pain doc and neuro know about it!!
One thing that sticks out in your post to me is "Dr says with proper medication and aggressive physical therapy that I wil head into remission"
I would be careful with "aggresive physical therapy"... believe me, I know! Aggresive therapy really set me back and I am conviced caused spread. I was getting worse, and we didn't know why. It was my friends on the old BT board who are now here that taught me it was this aggressive therapy that was probably the cause! Others had become worse after aggressive therapy. Now, this is my understanding of why - explained to me by my new Occupational therapist - who has really helped me!! My first therapist who was making me worse, having me stretch to far to quick - pushing to hard for RSD - encouraging me to go "past the pain - stretch further or you won't get better!" - like you would for any other type of injury or for regular exercise. He WANTED to help! But, he was treating me like all his other Occupational therapy patients! Not an RSD patient. Pushing to hard aggrevates RSD. The new therapist, who works where there is a world re-known Dr. in RSD so she treats RSD patients nearly all day every day - it is her specialty - she has a ton of experience with RSD people (this is CRITICAL for good therapy - your therapist must have experience - successful experience! - with RSD people!!) Anyway, she says that if you push till it hurts - you are only going to go backwards. That aggressive therapy is not the way to go. Slow and steady wins the race with RSD. She started me very slowly, and has very, very gradually increased what I do, and I have regained most of my strength, and a lot of my movement. Before, with the other guy, I very nearly passed out with pain during the sessions. With the new therapist, if I wince hard, she's making me pull back to a more comfortable spot and start again. Gradual, even smooth moves. I went back to the first place, to show him my improvement. He never thought I could do what I have done. I talked to him about how we accomplished what we have. He was very surprised, and has contacted my new therapist to discuss how she has helped me. He had no idea what he was doing would actually make me worse. He had been taught the old no pain no gain and could not get past that. Now he knows better. With RSD, it's no pain is all gain. You have to learn where the line is. You have to stretch, but you can't go to far or you go backwards. Each day you have to try to go just a tad bit farther - but not to far.
I travel just over 3 hours one way to go to a therapy session. It means that much to me to go to someone who KNOWS what they are doing because I know how much my RSD spread when it was aggravated by the stress and pain when I was in the hands of someone who pushed to hard.
purple pal said:"Remember that you got better because you worked hard at it" and "My mom's bone doctor said that it's ironic that RSD tends to happen in type A personalities, but it's type A personalities that tend to heal the best because of their drive."
I don't agree with this. I think that RSD is different with everyone. There are cases where no matter how hard you work, or what doctors you see, or what meds you take, or what surgery you have, you are still going to have RSD, and it is going to do to you what ever it wants. Period. How hard you work has nothing to do with it. Sure if you are in PT or OT, and you are ABLE to stand the awful pain of a simple stretch, you might be one of the lucky few who gets their use of their limb back. But I don't think that means you will have some sort of remission. I have worked really hard in OT for a year now. Nearly 3 hours a day I work at my therapy exercises. I do relaxation and chronic pain meditation. I go for deep tissue massages every week to keep the sensitivity to touch at bay. I am on the right medications. Even though my strength is better than it was after my initial shoulder injury that caused this re-occurance of RSD in summer of 2005, my pain is pretty much the same. I don't know how I could have worked harder. People would put me in the Type A slot.
With a typical broken leg you can have surgery and a few pins and do some leg lifts and work hard at your stretches and you are all better. You can work your behind off at getting better at RSD and still get worse.
Sorry to rant a bit. I think that's where you have to walk in our shoes to understand the actual frustration.
purple pal...your mother is very lucky to have been one of the ones who did get better. I went into remission once too. I didn't work nearly as hard then as I am now. This time.... no matter how hard I work, I will not be so lucky - it is clear to me that RSD is here to stay this time. Perhaps your mother is only a fall or a twisted ankle away from having it again, and next time, perhaps no matter how hard she works, or what medication she takes, or what doctor she sees, it won't go away. I think that is the nature of the disease. You draw the right straw - you get lucky. You don't - you don't.
However --- you can do everything possible to get better that you can.... get those blocks right away. Find the best therapists and doctors who KNOW about RSD... and then do your OT or PT. Get the best medications you can. Eat the best healthiest diet you can. Get the most sleep, and have the least stress in your life. Enjoy everything you can in your life. Find something you enjoy and DO it. Do chronic pain meditation - it eases the stress and tension. Take anti-oxidents, vitamens - everything you can that you think will help. But, understand that RSD may still do what it will, and don't feel guilty about it. At least that's what I have done, and how I have been able to deal with it. Knowing I am doing all I can - but that's all I can do. I can live with that. From there, it's out of my control.
Heidi, if you continue to have those zap feelings, you might try zanaflex or baclofen... I couldn't take zanaflex, but baclofen has really helped me. I used to get them so bad - They would bring me to my knees! I couldn't sleep, I would lay twitching. It felt like I was being shocked with a cattle prod or I had walked into an electric fence. I used to live on a farm - I know what that feels like!
First you get a zap then your muscles just start twitching uncontrollably. I think the chronic pain meditation helped me a lot with this too. I used a book/cd combination called Break Through Pain. The book helped me more than the cd, but somehow it made me less afraid of the pain, and helped me deal with the zaps and shock-like pains.
Do they have you on an antidepressant? The doctors are big on Cymbalta right now, but good old trazodone is the only one I have been able to take so far. (I have a lot of problems with many meds - can't take a lot of them
) It's listed on a lot of the websites and RSD info. Supposed to help with sleep and pain. I have not been on it very long, am not at full strength yet, so not sure yet if it's going to help with the pain, but it is supposed to. Even at half strength it has helped with the sleep. Was less than $5 too -- not even enough to make a co-pay! Before that, I was getting 3 hours on a good night.
Now, am up to 4-1/2 to 5 hours .
Downside is, I can't take it and the baclofen, so had to cut down on the baclofen late in the day and at night.
remember...... I'm not a doctor, and this is only my experience with these medications and therapists.. your experience may be totally different. RSD is very individual... and though these things did or didn't work for me does not mean that they may or may not work for you. The aggressive physical therapy may be just what you need.... but, I would hope that your therapist has successfully treated MANY people with RSD in the past. When I asked my first therapist if he had treated RSD, he said yes... only to find out later, he had treated it twice, and both people got worse......
Hope this helps!! And, welcome to the board, but sorry you have to be here. You've found the best place!