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.

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!

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

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........

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 and I can feel my knee is cold and my foot buzzy. Time to move and stretch again!!

Bram.

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.