The last 7 weeks were amazing
 

7 weeks ago I by chance had to see a nurse practitioner as all the doctors were fully booked

As I chatted with the lady I was gobsmacked to hear her say 'I only know this much about it because I've had it' I couldn't believe my luck - what are the chances of bumping into someone who has had this let alone beaten it (so to speak). I could tell from the way she talked that this was no placebo game she's defo' been through it you can only tell if you have it in my opinion

Hers was diagnosed by her physiotherapist after not having the ability to walk for nearly 2 years (her legs) it was the persistence and 'forcing' of her physio' that helped her eventually get it to a point where she had full motion and capability back

An amazing story she admitted that there are good days and bad but it's nothing at all like it used to be, seems once your past the 'super pain' your OK

Now I'm a seeing is believing type of person so to have this experience (having met/talked with her) and know that you can recover and beat this thing has been invaluable

For the first two weeks I forced movement where I previously couldn't - my RSD is my hands and arms and the left is swollen and unusable 7/10 days. In that first two weeks things began to improve and again for the following two weeks and let me tell you yes it hurts even more to force past what you think is the worst pain but the more you do the easier it gets

It's been seven weeks and I truly believe that almost constant movement is the answer, my hands/arms still hurt but not as bad and more importantly my left or right don't swell up now at all

If I stop using them for any period of time it's almost like I can feel it rushing back to the pain level it used to be at - so I continue and use them almost non stop

I'm so lucky to have met this person and for her to have shared the story with me, I hope this helps some of you.

The first two weeks were the hardest and the first thing I do when I wake up is constant hand/arm exercises

I believe movement is the key - lots of it, too much of it even. I believe the overuse/movement is somehow managing to remind the brain that there's actually nothing wrong with the limb

I feel like I'm slowly but surely getting my life back, 8 weeks ago I had seriously considered asking them to amputate my left arm the pain was that bad - I'm very lucky to have met this NP

Any questions please ask, also I didn't have to take a break while writing this post - that's amazing too it would have taken me god knows how long a couple of months ago

Be well and believe

There's plenty of research out there that confirms your post. Keep up the moving and keep everyone posted on your progress!! How long have you had RSD?

about two and a half years the doctors/HCP's I'd seen before her just didn't have a clue

I'm lucky, hope you're well!

This is essentially the same experience I had. It took more than 8 weeks...but 8 weeks in I was doing MUCH better than before. Yes the pain is still there, yes it is horrible, yes I have really bad flares from time to time....BUT I am back to walking, back to working full time, and am unbelievably happy to have taken back my life from this RSD monster.

I am very happy that you met this NP. Really...sometimes we can read something over and over but it's really not the same as talking face to face with someone who has been through it. Same goes for the doc...they can tell us we need to move or that we need physical therapy...but they don't really understand what they are asking. They don't KNOW what it really takes to push through the pain we experience.

Good luck to you.

My wife has had RSD now for 10 years. The early stages of RSD were hell on her. Her RSD has changed, she no longer takes pain meds, is in constant pain still, does move around and seems better mentally. But, in the early years those meds were paramount. Those are my observations. I get her moving but if she was to read this post she would disagree. :)

Thanks for this post and for confirming for me that i am on the right path. I have only had full on RSD in my arm for the past month, so i can only comment from that, but i have found that constant gentle movement of my hand has been the best thing. At first i was too scared to use it and took the rest it approach, esp because i hadnt been diagnosed and was scared to make it worse. then i saw the physio who confirmed that i had it and suggested not going past the pain, but moving until it hurt then stop and rest. then start again if i could.
I have been doing as much as i can, even pushing myself to type with my bad hand. I cant write for long with a pen but typing is fine as long as the tips of my fingers are not too sensitive and i just do a little, then rest.
Im finding alot of info that recomends gentle use. I also found that moving my hand in water was great even before RSD was confirmed. We were in a heatwave here in Australia so i would go to the beach to soak my sore swollen hand and was amazed at how i could move after.
Im really new to this but i feel that a "use it of loose it" approach has helped stablise my pain and hopefully ill beat this crappy condition.
:yahoo:

Movement is def the key
 

to keeping pain at bay. I've had RSD type 1 since March 95, and my physical therapist told me then that if I didn't move it I would lose it. I found wood carving to keep it moving. I feel lucky with my pt and an early diagnosis. She studied RSD and the docs knew it the first time they saw me. Having said that it is not easy to do, but it is crucial.:)
Finding something you love to do will help.

Don't lose faith
 

...in your ability to adapt and heal. It took me 18 months to walk after my initial dx. 5 years later, a bad flare sent me backwards...but it only took 3 months to walk again. I'm not doing well right now, but I truly believe the brain can learn new ways to make muscles move. Your post is inspiring, so thanks! :wink:

It should be noted that everyone is different with RSD.

I had RSD in my foot, went into PT evaluation for Fibro in my neck and shoulders. The evaluator was checking my range of motion in my shoulder and kept telling me to stretch further - come on you can do it - further - further... Just doing the evaluation spread the RSD into my neck and shoulder, where it is still, after several years, MUCH worse than my original site. When I left the evaluation, I sat in my car, and could not use my left arm to close my car door. Something was drastically wrong - my arm would never be the same.

After the RSD was diagnosed in that shoulder, I was put in PT that believed in pushing you past the pain. They had me in so much pain I was vomiting during sessions. I finally quit. I was a LOT worse in my range of motion and pain than when I started weeks and weeks before.

Some people may be able to heal after "pushing past the pain" but other may become worse after this type of thinking.

Just sayin' ....

I have found a compromise of going just to the edge of extreme pain and backing off. I do a routine of stretches an Occupational Therapist developed for me that IS familiar with RSD and works with a well known RSD treatment program. She told me never to work to the point of feeling worse pain, go just to that point, and back off. Eventually, my movement and pain would get better. Given time, it has improved some, but more important to me, it is not worse.

It's been many years now... I have regained about half the range of motion of my frozen shoulder. Am I 100% - no. But, I think if I had continued in the PT that had me vomiting - I would not have the use of my arm that I have today.

RSD is very individualized. For some of us "pushing past the pain" is the wrong thing. Slow and steady wins the race, not hard and painful.

Medications, therapy - all treatments for RSD - vary so much between people.

Today i have been thinking about this post and i have a question.... a newbie question! I have been taking Amitriptyline once a day 50ml. I started at 25ml and up my dose a few days ago. Ive had some good days on it and been able to move my hand fairly pain free for the first time since i got RSD and ive been using it to the max! now pain is creeping through, I imagine if i took the drugs away id be in a spot of trouble right now. My quesion is....

How far do you take the pain relief? today my hand felt almost normal as far as pain goes, except for some resting pain and some odd shooting pain in my fingertips and shoulder. This is great. However, we feel pain for a reason and I have only been using my hand to the point of pain. If i cant feel that pain could i make things worse? Thoughts......

Just my personal opinion...but I honestly don't think you are making things worse. Do you have RSD (CRPS type 1)? If you do (that's what I have) you have to remember that while we experience the pain there is no PHYSICAL injury in (for example) your hand. It's your nervous system that is damaged and sending those pain signals to your brain. So taking the meds is allowing you to do the therapy and movement that you need. It's generally takes a long time to learn your own body and what the signals are that tell you that you need to stop or take it easier. You have to learn your own tolerance level and at what point the pain reaches a level where you cannot function afterwards. THAT is pushing too far. Do it to the point where, after some rest, you will be able to do it again. Doing a whole bunch at once but then taking a day or more off will not do you any good.

Constant movement, in my opinion, is the key. I don't necessarily say move so much that you are pushing past the pain in the sense that you are overdoing it...I've paid the price for that many a time. But constant movement might be just flexing your hand (not holding or touching anything) or it might be doing puzzles or it might be doing some other hand held task or it might just be typing. If it hurts too much then rest but after some time move again. When I say pushing through the pain I tend to mean don't let the pain stop you or prevent you from moving and exercising because immobilizing is a vicious cycle of much worse pain. It took me a good 6 months to reliably get on my feet again after being in a wheel chair and that was with DAILY physical therapy exercises. I never took a day off BUT when I was having a bad day I would revert to the very early exercises (simple stretching ones without any weight bearing). By doing this I was able to keep up the constant therapy and movement but not set myself back by overdoing it. I also started out doing one exercise, then resting for an hour, then another, and then rest, etc. Gradually I was able to do a couple exercises at one stretch before resting, and so on until I was able to go through them all without taking a break.

Again...these are just my opinions based on my own experience and I know we are all different. I worked with a physical therapist at my home who came at the beginning twice a week and then went down to once every other week so we could make my physical therapy last longer (because insurance only allowed so many visits in a year). Doing it at home meant no fancy equipment and no weights or anything. It was all gradual and easy. She was a wonderful woman who didn't know much about RSD when we started but was willing to learn and really did amazing things to help me reach my goals of where I wanted to be. I will forever be grateful to her.

At this stage I have only just been diagnosed and have not had the nerve scanned yet. but guessing 2. I had a burn injury 5 months ago covering my whole left arm and it started at the site of my deepest burn above the middle and index finger. Deep second degree so there was not direct damage to the nerve, but there was infection issues and delayed treatment and alot of tissue damage. lets say the health system let me down at first! So my hand went through hell and i did do damage to the nerves in my skin but not sure about the major ones where i think it all started. Im going to ask for a referal to a neurologist when i see my Doctor next week.
Im still learning and a little high on meds so sorry if it dosnt make sence. I really over did it today and im paying for it now.

Hi everyone,
My daughter has been diagnosed with RSD just this week. She is in constant pain from the top of her head to her knee on the right side. She is a liscensed counselor and is still trying to work a full schedule, it is very hard for her and she had so much paperwork. After her work is done for the day and she sits down to relax she gets very bad muscle spasms and tremors in her face, neck, shoulder and arm. This happens every evening. Has anyone has any success in dealing with this.
Thanks
Marlene

thanks for the replies I'm sorry if constant or near constant movement isn't working for everyone

I think it really depends what stage of physical limitation you're at I really thought my left hand/arm were cooked for life it didn't feel like it was attached to me and had me in just the worst discomfort I've had hence the amputation consideration before meeting the NP

I rub my hands together I'm forever brushing surfaces with them and flexing and I know it's saved my life.

I'm learning to play guitar and off on holiday this Friday, it's great to be going the right way - it still hurts but nothing like before

Now that I'm active I'm also looking for ways to spread the word about RSD but more importantly people need to know it must be moved - as much as possible for you

I wish you all the best, contact me if you want any more info

I am really happy for you that you have had success with your pushing through the pain program.

What I was taught at Cleveland Clinic is to keep moving and stretching, walking etc. But not to the point where the pain is worse. You need to push just enough to find where that point is and back off a bit, but keep doing it. Gradually that point moves a little bit further. It's been a slow way to go, but I keep plugging along. For me, I truly believe if I had kept on the path of no pain - no gain or push past the pain, my spread would have been much more rapid.

Everyone is different with RSD. That's one reason it makes it so difficult for Doctors to treat us. Different doctors have different opinions and approaches. I have learned to look up treatments, medications etc. on my own before I try nothing new.

This Comprehensive overview of RSD co-authored by Dr. Schwartzmn covers a lot about RSD. It says this about physical therapy and RSD on page 25 in the section on physical therapy.

"Therapist and patient should be instructed to avoid exercises that exacerbate the pain."

Complex Regional Pain Syndrome (Reflex Sympathetic Dystrophy)
by Dennis D. Dey, MD, PhD; and
Robert J. Schwartzman, MD
module updated 2012-07-06

https://www.edsers.com/uploads/RSD.pdf
----------------------
That being said, I do wish you would continue posting about your progress. It's so encouraging to see someone actually having improvement. :yahoo:

I used to play a hammered dulcimer. I played standing up. When I got RSD in my foot, I learned to play sitting. Well, now that RSD is in my arm, neck and upper back - I can't play at all. I can't even tune the thing because it takes both hands (it has 144 strings). BUT - I refuse to sell it. I have NOT given up hope that someday I will play again!

:grouphug:

144 strings that sounds like a real instrument and I you'll get the chance to play it again I'm sure

the reversal of the condition of my hands/arms is amazing - my hands aren't blue and neither hand/arm has swollen up since this plan has been in place

there's so much negative information out there about RSD that we end up wired to think 'it''s going to get worse' but this is what I know:

the only other person who I've met in real life with this condition had it until her physio' diagnosed it, forced her to move it and it never spread - she's been stable since and continues to help people

that's the only proof I need and I just wish it was enough for anyone reading this

my D chord still sounds odd to me as I'm learning on classical guitar but according to my tuner the strings are tuned perfect - I just deal with the six strings :D

be well

Update:

Still maintaining full motion and haven't had either hand/arm swell up (this is amazing)

good days and not so good, pain wise it's not at the intensity it was so I can now concentrate on tasks

my most interesting realization is that I feel like the RSD process is reversing in almost perfect chronological synergy (mainly talking about pain level)

it's hard to explain but it's like the pain map for my hands/arms is slowly going back in time - the stages I have had where it has got worse and worse are the opposite now, it's getting better and better

got a proper acoustic guitar and the D chord sounds great now I love steel strings

wishing you all well

As with everyone else, I think we are all experimenting in little ways with our CRPS and what we can and can't do. I find that if I stop moving about, flexing, stretching, twitching my muscles etc, then the pain and redness and burning increase. On the other hand, some days the slightest movement causes such pain that I can't bear to do it again....so I rest and wait and try again later lol...

Once past the worst of the pre-diagnosis hell, and the why me pit of doom, I decided to take up the cello again. My CRPS spread from my knee to my whole left leg, and has started affecting my left arm, but I don't believe it has anything to do with the cello, and I continue to play. If I stop, I think things would get worse much quicker than if I play every day even just for five minutes :) I also play the piano and have done since I was a small child - it would be terrible to not be able to play, so I do some every day no matter how I feel, and it always soothes me a bit - my heart if not my body!

Besides which, music is fantastic for your state of mind, and doing something musical occupies your whole brain in a way which distracts it from a lot of the pain. I love it and I'm not going to let the CRPS steal it from me like it has my tennis and long walks and dancing and climbing and........:rolleyes:

ANything is better than nothing, and we all know the pain will be there anyway. Keeping it under some kind of control is the tricky bit. I do think that pushing activity until your pain worsens is not a good thing - it must heighten your pain response systems and awaken the CRPS over-reaction to sensation. It's a vicious cycle.

I've been sitting for too long typing this :D and I can feel my knee is cold and my foot buzzy. Time to move and stretch again!!

Bram.

A year on...UPDATE
 

A year is a long time and a lot happens in our lives I thought this thread was worth updating for anyone wondering if I became worse, better or stayed the same.

I keep a journal on pain scores (three per day) simply put I used to live with a 7 and now I'm living with a 4. The condition has settled I believe mainly due to having learned almost the exact amount I can do in a day in relation to how the hands/arms are when the day starts

The obstacle I've had is not quite been able to achieve repetitive movement over long periods of time but I'm almost there and expect a return to full time work within months or sooner.

I cannot imagine where I would be or what state I would be in had I not met that woman on that day, I was at my worst and needed something/someone and that encounter happened and is without a doubt the defining moment of my life.

Hot water therapy has really helped too but mainly finding the right amount of movement and type of moves for yourself is key.

A year on neither hand/arm has swollen not once, I still find that astounding even today - the disease was clearly trying to progress but didn't.

My hands and arms have some burning going on, some energized uncomfortable sharp feeling, nerves firing but it's like a baby version of what it was and that's fine with me as fellow RSD's will know the 'range' of pain is quite a long spectrum.

Be well!

My experience has been to move through a little pain, but not to the point of
extreme pain. My P.T. is experienced with this thankfully.
It's been over a year with this for me. I started with an EXTREME case in my
arm & hand. My hand is still contracted, but I've gained about 40% movement
back when I had ZERO. When I started out I'd go to P.T. with a soft sock
& splint on my hand. When they'd take off the sock I'd think they were skinning me alive. So, it is a very slow journey for me to say the least. I've had over 70 P.T. sessions, 22 of them immediately after a nerve block.

That's awesome you came back to share, BFF. I think what happens a lot of times is that the people who get better don't want to remember what ground zero was like.

In another year that 4's a 1 :)

I am so very happy to hear that you are still doing well.

I agree that the best thing (for me anyway) is learning what your limits are and living within those limits. I still push myself to always surpass those limits and gradually I see improvement over time...but being realistic and honest with myself about what I can and cannot do has greatly improved my ability to function throughout the day at a "normal" level.

I also think that over time...we adjust how we perceive the pain. For me...what I would classify a pain level of 6 at today probably would have been a 12 before I had RSD. As you go through this nasty disorder I think you really alter your idea of what real pain is because (at least for me) I could not even imagine what this sort of pain would feel like prior to experiencing it. As time went on...I learned new meanings for a 10 on the pain scale and then what I USED to think was a 10 wasn't nearly so bad. I've definitely learned to cope with pain over these past 5 years (feels like it's been forever).

It's really the combination of those two things (plus a great support system at home and a lot of things in my life that are really wonderful) that make living a more "normal" life possible in spite of the RSD. Don't get me wrong...this is not the life I would ever have pictured for myself and the pain flat out sucks...but there's a lot that I am grateful for.

I'm so glad you continue to get better and I hope you reach your goal of returning to work full time. :)

Well said catra :)

Bram.

pushing not for me
 

If I push past the pain to even do something as mundane as finish grocery shopping it leaves me in that level of pain for three to four days , I have actually collapsed because of this before. It is horrid and so so painful, it doesn't help movement at all but maybe that's because its nearly my entire leg? weight baring and all that? Maybe the benefits of extreme use is individual as we are?

Pushing to that point is NOT a good idea. It took me months and months of gradual increased movement (constant...but starting with very very basic stuff that was not weight bearing at all). I still walk with a walker...primarily because even though I can do a little walking without it...it is a HUGE strain on my leg to be full weight bearing. I cannot last very long at all if I don't use the walker. But WITH it...I can be on my feet for a full 9+ hour shift at work. I'm only 30...27 when I started using the walker...so it does feel strange to need it...but it allows me to live a more normal life.

But even with that said...we are ALL different. The key is learning our own limits and pushing just enough to continue improving but not so much to set us back. I've had many setbacks and bad flare ups over the past few years since it spread from just my left ankle to my left knee and entire upper body from waist to neck including both arms and hands. No matter how you slice it...there just isn't a quick easy one size fits all approach to treatment of RSD/CRPS.

That's how my boyfriend is...he can definitely see it in my eyes when the pain flares up.

I actually find that the walker is pretty well received by strangers. I guess because they think why would I use it if I didn't need it? What I also like about it is that it's a seat (it's the kind with 4 wheels and seat) and it has a basket to carry things too. I find it takes a lot more weight off my bad leg than the cane does. I like always having a seat with me so that no matter where I am or what I am doing, I can sit if I have to. I've also been know to sort of kneel my bad leg onto the walker if I am standing still so there's no weight on it at all...all is on my good leg...but it's comfortable because I have something to "set" the bad leg on so it's not just hanging there.

I also use the walker for balance...mine is terrible. I just fall...completely out of no where I just fall to one side and end up on the ground. That's scary...but the walker has been great and I haven't taken a tumble while using it. If I feel like I'm starting to tip I hit the breaks and either wait until I am steady or sit down on the seat. That walker is really the best thing I have gotten since this darn thing decided to spread to most of my body. I literally could not function "normally" without it.

I Have the sudden loss of balance to , just for no reason at all it seems. I mostly do arm windmills and catch something so i don't fall. I have fallen and will in the future to. Thus the cane! lol.
I can see the walker being received better because lets face it canes were once a fashion item , walkers never have been and for a young lady to use it she must need it.

Ditto on the balance Catra and Lynn. Reminds me of the odd day in my youth when I really did have a skinful and could barely stand. When you go, you just go. It's really weird and unsettling.

I've been fairly lucky in that our house is quite small, and there's usually a wall or a bit of furniture to clutch when it happens. If I do go out, I usually have someone with me now, and if I lurch they can catch my arm. I often wonder what people think!

Catra, the walker sounds like a great plan, and if I'm honest it would solve a lot of going out issues for me. But just yet I can't bring myself to do it. Ours is a small town and everyone talks and comments, particularly the older folk, who can be very judgemental and cruel. I know it's daft, I mean I used a wheelchair for over a year. I suppose I've associated a walker with old people, and I know that's unfair and stupid of me. I know better about these things now...:rolleyes:

Maybe it's time. It would give me more freedom, and that's what it's all about.

Thanks for the discussion. As always, I learn such a lot from everyone here.

Bram.

you and I both, I have thought about it several times but I just don't feel that bad yet, even with all my issues i walk relatively fast sort of ... I guess not Dave my fiancee is correcting me over my shoulder. :rolleyes: I had seen one of these and thought long about it but I had worries about putting pressure on it that way so i tried to just stand like that with my knee on a bench... it might help some but not really.
http://www.medline.com/product/Gener...6#.UzvRDVdGmpo

I don't think that sort of knee walker would work for me either. Even though I kind of use my 4 wheeled walker that way when standing still (to keep the weight off my bad leg)...I don't actually put WEIGHT on it like you would with the knee scooter thing. When standing still...it just gives me a little bit of relief from the weight bearing when I need to be standing still for a while...I put all the weight on my other leg during those times...not on my knee.

I am pretty speedy with my walker...mostly because I don't worry about falling when I have it...so I zoom right along unless I am having a bad flare. When I walk without the walker or with just a cane...I have to go slower and take very deliberate steps. With the walker...it's pretty much get out of my way or I will run you over...lol! Not when I first started with it...I was slower than the oldest granny at the mall...but I've worked my way up to a pretty normal pace (except when in a bad flare...then I'm at turtle speed again).

I tend to "hug" the furniture and walls when I walk at home without the walker too Bram...the only reason I am remotely grateful for our tiny kitchen is that I can work in there pretty easily because everything is literally within arm's reach.

I got my walker on amazon.com and I got a pink one...the one thing that sets mine apart from most of the ones I see older people using...lol!

The furniture hugging is what I do at home too but I know it as furniture surfing I think my pt used that word lol. I would describe it as clinging on for dear life myself!:D In my home there is always something sturdy to latch on to except for to the right of the back door which is why I rarely use it!