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04/05/2012 02:01 PM

Exercise and RSD

cfthb
cfthb  
Posts: 1022
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I'm an Advocate

Hi Everyone -

I want to say a few things about the advisability of exercise for RSD sufferers. This topic has changed in the medical community in ways that all RSD folks should know about.

We all know that exercise can make our pain increase. Last year, medical and scientific experts (sorry, docs, but I do not consider you scientists) at the Nijmegen Medical Centre, Radboud University in the Netherlands published an important paper in the journal PAIN that turns our usual "Pain avoidance" philosophy on its head.

You can get a pdf copy of this paper at my website, in the first newsletter I ever published; here's the link to the newsletter. Check out the fourth item:

http://www.thblack.com/links/RSD/NL_7-11.htm

In the new technique, called "pain exposure physical therapy (PEPT)", potential patients are educated about the source and meaning of their pain. The take-home message is that, unlike most acute pain, neuropathic RSD pain is a false alarm - it is signaling no tissue damage and no worsening of their illness.

However, we still react to it in our evolution-honed manner, which is to avoid it at all costs, to avoid further damage. When patients understand this, they are much less fearful of it, and are willing to go through it if it means they could be cured.

Good thing, because the first item of business is to withdraw patients from all RSD drugs. Then they go through a carefully scripted series of physical therapy techniques with the aid of a highly qualified and trained PT. As patients know ahead of time, the PT will not respond or react to any expressions of pain, although their function is to help patients through their pain thresholds.

Sounds scary as hell, no? Well, in their series of clinical trials, only 1 or 2 patients dropped out due to the pain. The authors say that when patients are educated about the pain, to expect it, that it means nothing physiologically, etc., they're willing to accept pain levels they previously thought impossible.

The patients are also aware of the place's track record. They can document cure rates - not remission - that are truly astonishing. Their patients achieved pain reduction, increased motility, and improvement in many other metrics. The purpose of the current study was to verify that PEPT was safe and that no disease progression or worsening of symptoms was ever seen.

Bottom line, as many members have mentioned, is that exercise - any exercise - is extremely helpful, and that giving in to kinesiophobia (fear of motion) is very bad and leads to lessening of function.

Please check out the paper for yourself, but make no mistake - moving the affected joints is essential for helping achieve remission or cure, and ignoring any associated pain is part of the process. It doesn't take long, either. Although 6 treatments, spaced several weeks apart, were anticipated, many patients were able to stop early due to being cured quickly - in a few cases, in only 3 treatments!

This is a perfect example of "use it or lose it"!

Howard

Post edited by: cfthb, at: 04/05/2012 06:51 PM

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04/05/2012 04:56 PM
revvanbus
revvanbus  
Posts: 2033
VIP Member

Howard, thank you for showing us this study. I will be looking for more work in this area. I did note that by study criteria the participants were 6-18 months only into the disease so still early in the disease. However I know how slowly my RSD/CRPS disability progressed because early on I refused to stop exercising because of pain.

I am off all meds except Lyrica now (at 12 years into the disease and will start therapy Monday aimed at getting me on my feet part time (using a walker largely because I have no sensation in my feet and lower legs at all so don't even know if I don't watch every step what position my feet step down in nor if I am going to be walking on an even surface.) My pain management is mostly mind-body techniques. And the knowledge that pain won't kill me nor even cause worse damage.

That is not to say I won't hurt more after the therapy, just that my life is worth more than not hurting as much and I must get up after 5 years in the wheelchair. This study helps my resolve. Do I anticipate remission or cure? No, just improvement of overall health.

Rev.


04/05/2012 07:23 PM
cfthb
cfthb  
Posts: 1022
Group Leader
I'm an Advocate

Rev, thank you much for so discretely pointing out the error in my description of the PEPT technique. I stated that the researchers achieved remission in people with many years' illness. Actually, none of their patients had RSD for more than 18 months; in fact, it was part of the study design. I had been reading a paper that wasn't even related to this stuff, but the idea of "remission after many years" carried over in my tired brain. I regret the error.

The plans this group has for this technique are ambitious! Not long after my newsletter came out, I got an email from a surgeon who was a co-author of the paper. He didn't much care for my characterization of their technique, and made a case for my not being so skeptical.

Though he conceded that I wasn't saying anything false, he was afraid that my selection of words about the painfulness of the procedure could scare away people who, upon going through their material, might want to try it out. He convinced me, too; what you see is not what was in the first edition!

Subsequent to that fascinating exchange, I read quite a bit about the whole philosophy behind this modality, which has several variations, as well as reading many accounts of their experience by former patients who had gone through the protocol. I plan to continue monitoring the progress of this controversial technique, and am becoming convinced that it has real potential to end or permanently mitigate the suffering of millions of RSD sufferers.

I also learned, again, to never underestimate the pervasiveness of the Internet (remember when it was called the World Wide Web. the source of the "www." that still precedes many URLs?), because you never know who might read what you write!

But, I've gotta admit that I got a real thrill knowing that professionals in the Netherlands were monitoring my site, and had read my very first newsletter! Smile)

Howard

Post edited by: cfthb, at: 04/05/2012 07:23 PM


04/06/2012 10:29 AM
luckyduck

Hi Howard,

That's an excellent article! I really liked reading how they use a thermal laser thermometer to get readings. I have been using my husbands laser thermometer for the past few months. I found it out in the garage. Ours is a Cen Tech. They don't cost very much. When my husband saw me searching for one on amazon he said don't buy one I have one of those.

Two months ago I asked my doctor about thermal imaging and he shot me down. Told me it was pointless and a waste of money.

So what I found out with my feet and toes is that the lower the temp goes the higher the pain level is leading me to believe I lack blood flow. My toes this morning range from 79 degrees to 83. They have gone even lower than that at times.

The minute I point the laser going higher up my foot the temp goes up but it's still not normal compared to my husbands feet and legs or my daughters. I asked my daughter if she'd let me check her temps last time she was here visiting. I have been suspecting for many months that I personally have a vain condition but my doctor ruled it out a couple years ago with two types of tests. Nothing else makes sense to me as to why the coldness and spasms, bone pains and deep aching cold feelings I get.

On Dr Hooshmand website there was a mention of cold, stabbing, electrical rsd. It was the only site I ever found that mentioned it. He had wrote that brand name tegretol? was the right med instead of gabapentin in cases of cold electrical rsd.

http://www.rsdrx.com/rsdpuz4.0/puz_95.htm

I did have a dx of bilateral neuropathy 2 years ago. His site mentions rsd causes that here.

http://www.rsdrx.com/rsdpuz4.0/puz_139.htm

Howard you mentioned that inactivity is bad. Here's Dr. Hoosmands mention about that as well.

http://www.rsdrx.com/rsdpuz4.0/puz_137.htm

I guess I've carried on here a bit.

Trying to get my doc to use what Dr. Hoshmand suggests has been slow.

I did get the PA to let me try baclofen and it's helping.

The information you presented seems to follow in line with what the top rsd docs give to children with success. At least the exercise part of it.

I had two therapy places fail me by not giving me proper exercise in the beginning.

I personally went to my own extremes finding all types of exercises I could do several times a day to get my locked leg and hip to work again so hopefully this new therapy is onto something. It would be nice if they published some videos on the web showing people how to do it on their own but that won't happen.

Bottom line is that I did do my exercises through horrible pain and still do when the flairs kick up high. For me I have had to learn what pains are from what because my arthritis in my hip can get much worse if I push too hard when it's swollen and burning really bad.

Thanks for sharing the information. I hope I haven't bored anyone with my rambling. Have a great day. hugs, Lucky

ps. I just uploaded some pics of my laser thermometer showing my toes and foot temps

Post edited by: luckyduck, at: 04/06/2012 11:06 AM


04/06/2012 07:31 PM
maddiesgram
maddiesgram  
Posts: 2432
Senior Member

Howard and all,

That is an amazing article. It goes completely against everything I have read about RSD the last 5 years, which is obviously much less than you, but it seems like a lot. I am very intrigued and even somewhat cautiously hopeful. I did notice like you guys said that the participants in the study had 18 months or less from the time of the initial event, and that makes me so curious what results would be if done on those of us who have had RSD for 5+ years. But, it was very encouraging. I was honestly shocked by the outcome. There was also the second study which was done on children, but it seems they do have good outcomes often, so I didn't read too much into that one.

I was curious when I saw that one participant began with a broken toe, like me, but she was the one who dropped out. Howard, how much do you think our psychologies and possibly state of mind at the time of injury or whatever began our RSD plays into us getting it? I know it was once considered a psychiatric disorder but have always read that this theory was proved untrue. My mind is almost racing right now trying to figure out what all this might mean for those of us here without answers. If what we have been doing is not working, and clearly it's not, doesn't it almost make sense that we try something else? The old AA saying comes to mind about the definition of insanity being trying the same thing over and over again and expecting different results. So far, those of us who have followed what I learned early which was to NOT push ahead once the pain went up, have only become worse and worse anyway. I remember reading shortly after learning about my RSD that "No pain, no gain, did not apply to RSD patients" and have kept that in mind for five years.

Wow. I often read of childrenn with RSD going through extensive physical therapy yet when I was diagnosed I was NEVER sent to physical therapy at all, simply given blocks and then offered a SCS. That's pretty incredible after reading this article, although the article was written after my diagnosis. Have I suffered so much more due to doing absolutely nothing (almost) for five years other than sit on my sofa? That's a crazy thought but seems possible after reading this. I wasn't even familiar with the term kinesiophobia until now, but reading the description of this individual, with pain aviodance behaviors, I could only say "ME!"

Last week I started trying to move around a bit more because of Rev saying how much she wished she had basically done that. I decided to try to overcome my fear of the pain with the fear of becoming completely disabled. And, combating fear with fear might be somewhat motivating, it's not a very hopeful thing. This article actually gives hope that trying to exercise (probably to a point) might actually in the end help you get better. That's an amazing thought!

Do we know of any adult, long-established RSD patients that this kind of exercise or physical therapy has helped? That would be so encouraging to find out. I know that this study had precise guidelines that the therapist followed. I am wondering how we, as RSD patients at large, might use this to be helpful in our situations. How would we even guess how much might be "too" much and is there such a thing as "too" much? Another question that is coming to mind is why with my pain in recent months have I seemed to have spreading the days that I do really push myself. Yes, the pain increased, but also several times since Christmas I have noticed new areas of RSD pain only on the days where the pain has increased due to activity. After 2-3 times of this happening I can say for certain that I developed a bit of a phobia of movement, of causing the pain to increase. And as Howard mentions there is something within us that tells us to avoid pain at all costs. It's so interesting and I can "see" how this would help especially someone whose pain was not as firmly "centralized" as some of our is, but can it help me or Rev or Lucky or Craig?

Do you guys think there is a point where too much still might harm? I wonder why I first felt spreads only when my pain was increased due to activity? Did the RSD spread and I only noticed it when the pain levels increased, yet the spread was not actually caused by the increase? I haven't had the range-of-motion problems described by Lucky so have not needed exercises for that. When I was reading, I didn't "catch" if they described an idea of how much exercise we are talking about that these individuals did. Because all of us have done some things since our RSD that are active and cause pain increases, but these things don't seem to have had positive outcomes for me. I am wondering why.

I want this to be hopeful and don't know what to think other than to try to keep moving some more than I have. If anyone can tell me a better way to figure out how much to allow myself to do, please let me know. Is there an upper limit of exercise? Did I ask that already-lol? My mind is swimming with this!

Thanks, Howard.

gail


04/06/2012 08:55 PM
revvanbus
revvanbus  
Posts: 2033
VIP Member

Gail, when I first developed RSD/CRPS from the second cervicle fusion surgery and it was diagnosed 9 months after it started my pain doc told me several things: 1. he had seen cases where the hand and arm shriveled up and became unusable with in a year 2. the current (12 years ago) rate of suicide for the disease was 25% 3. the only way I could save the use on the hand/arm was to use it: keep it strong, do therapy, do it myself in addition to the PT and do it no mater how much it hurt. So I did that and despite the pain and the worsening of the pain and the weakening finally of the muscles and the shrinking now of ligaments and tendons, it took 10 years to lose most of the use in my right hand/arm shoulder. I don't know if I can get that back but I am grateful for the sharp dose of reality that kept me using my right limb. It has been 11 years since the RSD spread to my left arm after the third cervicle fusions (now have 5 fused neck vertebra.) The SCS helped but so has the strict exercise schedule. I still have all use, no feeling but a lot of strength in the left hand/arm.

The legs, I already had weakness in and developed a spread after lumbar surgery 7 years ago in both feet, spread to lower legs. Then developed diabetes and the combination of RSD/CRPS and diabetic neuropathy made the feet feel like I was walking on shattered glass, not to menttion the burning, electrical sensations, all the other pains. Finally, after the walker became impossible because I kept falling because of the pain, I ended up in the powerchair 5 years ago. But I have developed COPD and congestive heart failure and if I don't get up on my feet at least part time in a walker; well I just turned 60 and probably won't make it to 65. My primary's doc's diagnosis, not mine. That is why I have to get back on my feet and get my muscles working as much as I can.

Does the exercise help my pain? Not so I have noticed but it helps my life. I have never sat around doing nothing and never retreated to my bed because I have believed for 12 years that to do so was to give in, to let the disease take me and I refuse. But I have let it take my legs. I hope I am not too late to get them back.

I can't speak for anyone else but my recommendation to keep moving, the saying I borrowed from my PT "move it or lose it" that others borrowed here before me, I fully believe.

That's my story. I know the exercises have kept what I have working better. Just wish the pain was not so intense in the midst of it.

Rev.


04/06/2012 10:36 PM
scorpioj
scorpioj  
Posts: 1507
Group Leader

The best rule to follow with exercise is: "if there is pain after exercise that is good pain, if there is pain that puts you in bed for 2 or 3 days that is bad pain. Some pain tells you that you did enough to be a benefit to you, lasting pain tells you that you overdid it and need to ease up.I am convinced that if I had not been encouraged by the sport medicine Dr. who finally diagnosed me to go to physio and to pursue aquatic exercise and work up to tai chi,yoga/pilates stretching etc, I would have ended up in a wheelchair with RSD spreading,as I was not using my muscles or weight bearing much due to the pain. I spent far too much time in the beginning of my RSD in bed or sitting. I have been more active since her diagnosis 7 months into RSD & to this day and feel that is why I am coping as well as I am. I still have pain and working proved too much, but I can manage at home if I stay within my energy boundaries each day by breaking tasks down into smaller components.Good topic!! Exercise is so important to us!.

scorpioj


04/07/2012 05:21 AM
maddiesgram
maddiesgram  
Posts: 2432
Senior Member

Hi- Yes, I am certainly seeing recently for myself that exercise has to be more important to me than it has. I know that early on I read to basically stop when anything became more painful, which was stopping at no exercise at all. I have tried to push through an amount of daily activities that might replace some exercise, due to living alone and having no other way for essential things to get done, like laundry and grocery shopping.

Also I have been doing some stretching and exercises that keep my feet hopefully from getting tight. But, now I will "try to try" more. Yesterday afternoon and last night the pain was very high and burning was crazy bad. I woke up this morning with as bad as any morning pain has ever been for me. And, I need groceries really, really asap. In theory I would try to do some exercises or walking today but in reality I will be just trying to figure out how to get food/groceries. I'm so mad at my RSD right now!

Thanks, scorpioj, for your explanation of good pain and the other kind. I like something that's simple to remember like that is. Exercise is important as I am learning but so is our ability to function and pushing TOO far as you described can keep us from being able to function for awhile, which is not what we need. This makes sense to me.

Thanks!

gail


04/07/2012 06:14 PM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
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I'm an Advocate

Evening everyone

I'm one of the ones who also believe in the move it or lose it (use it or lose it) theory also. And I also know it's a delicate matter in many of us. I still do my Yoga as much as possible. Just to stretch out the muscles I could otherwise cause more crippling (not a good word to use maybe) in myself.

Walking as much as I can, even though it's not a lot. Often times the pain is just something I don't want to go back to. I have to push myself and use my mind always in it all.

Even the daily (sometimes every other day) knee bends, ankle swirls, leg lifts, abc's with my toes (which seem to be the worse) keeps them stable.

When I had my mirror spread a couple of years ago I started immediately desensitizing, so I'm lucky on that side that the Allodynia isn't as bad at all. I can brush that foot along the sheets and not want to scream like the other side. I'm so glad that I did that.

Even some movement helps us. It doesn't have to be extreme for it to benefit us. Smile

Happy Easter,

~Twinkle


04/07/2012 06:59 PM
ramona8
 
Posts: 9
New Member

I have had RSD since 1998 and I have had PT through out much of that time. Much of it has been working on keeping my balance, walking and pool time. I think that depending on where in the cycle of things you are - exercise can help more or less...right now I'm in a massive flare up - so I can't really exercise at all. I was in the kitchen 2 nights ago and just wiped out. I knew I should have already gone to bed - but I was pushing myself to do just a few more things - even though the pain was up and the numbness and buzzing was so much worse by night fall. So, I think that movement is helpful in doses and in amounts that are not going to be detrimental. You don't want to do something that will push you so far that you end up falling or breaking a bone or tearing a tendon b/c you don't pay attention enough and you really do hurt yourself- but I do feel that the main reason I have stayed out of a wheelchair up to this point is b/c I've had such an aggressive PT schedule with my RSD treatment.
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