Desensitization and gradual increased movement of affected RSD areas was a HUGE help for me. It took many many months...a little over a year for me to regain my ability to function more or less normally. I did my exercises EVERY day without fail. If I had a bad day then I did earlier, easier exercises...but I never missed a day. Progress was painfully slow but constant and steady. I had an at home physical therapist who understood that we needed lots of time to see improvement. She was able to get approval after the first two months to see me only once every two weeks so that we could lengthen the period of time that I would get therapy since insurance limited the number of VISITS...not the length of TIME. She was only able to do this though because in those first months I demonstrated my dedication to doing my exercises every day and made constant steady progress. Because she could trust me to follow through, we were able to get the extra time we needed to get me to the point where I was able to regain my functionality.

I'll be honest...all of this...it didn't help or stop the pain...but increased my functionality enough to return to work full time. I went from being in a wheel chair, not able to walk or stand at all...or do anything really...to now just needing a walker to allow me to be on my feet all day at work. Normally at home I do not use the walker (sometimes a cane and sometimes without anything)...but with the walker it takes a lot longer for my pain levels to increase to the point where I can't stand it AND I still have bad balance problems and will just fall sometimes...no warning...and that would be very dangerous when I am outside the house.

For my PAIN...I still use a lot of little tricks and things to help me get through the day. I have my heating patches, my braces when things are REALLY bad, heating patches, TENS unit, etc. We all have to find ways to make our quality of life better. I use all of these things to help me when the pain starts to get worse than I can handle without them. I wear a scarf and gloves all year long to protect me from cold and/or air movements that I know will flare up my pain. Hurts to wear them...but cold and air movements hurt worse so it's a very delicate balancing act.

I really encourage you to stick with it...but be wary of any therapy that pushes you too far too fast. My one experience with out patient therapy was that they really pressured you to improve FAST (probably because only allowed so many visits) and we just can't push that hard that fast. It's about constant steady improvement over time with this condition...too much too fast will only set you back. So my advice would be to do your exercises at home every day, twice a day if you can, and if something is too advanced in therapy then you need to speak up. My therapist, when we were only seeing each other once every two weeks, would give me exercises I could handle now and then show me what the progression of that exercise would be (the next step) so that over those two weeks I would work towards the new exercises at my own pace.

Good luck and I hope you see continued improvement.

I totally agree!! It takes constant daily dedication and though none of these things stop the pain it does make it easier to function daily.

Symptoms from person to person vary greatly.

My pain is constant and unrelenting and it includes: allodynia, hyperesthesia, constant feeling that I'm being cut by razor blades, lightening bolt type pain or the feeling that two live wires are being touched together in my legs, muscle spasms, edema, muscle pain wasting/atrophy etc., None of this ever goes away but is made much, much worse when any(even the slightest) tactile stimulation of the skin is evoked. Even something as simple as a single piece of paper placed on my thigh will instantly increase the pain and feeling that my leg is being torched, the electrical shocks get more intense and the swelling will increase. I was told by several neurologist that the damage to the peripheral nerves and subsequent CRPS responsible for the sensory pain sensations is the FIRST line of defense and not the last. Yes, keeping pain manageable at the same time is important but, waiting to get the pain under control before attempting to get the sensory input desensitized could be tragic for someone who is early on in this journey, since that process often takes many months and may never really happen at all. Nearly every doctor who specializes in CRPS would recommend aggressive early treatment for the best possible outcome. Having extreme sensitivity to the slightest touch seems to be a logical place to start, since this stimulation can cause the other pains to ramp up and it also causes a great deal of challenge in daily life. Obviously we all need to learn to communicate with our therapists and doctors but, often times because we are scared or concerned with the lack of knowledge in the medical community we go in to these appointments already on the defense, which can deter the best intentions.

Discomfort would be a godsend but, that at least for me has not been achieved since the moment I woke up on the recovery table. Our levels of pain and symptoms are all different.

Passive motion (where the therapist is moving the affected limb) through therapy is generally considered to aggressive where as gentle movements instructed by the therapist but, done by our own power is thought to be much better. Personally, I can attest to the importance of that even in exams. When a doctor wants to touch my affected leg, we do it together. I ask him/her to show me what they will do on them selves or on my unaffected body part and then I place my hand on hers/his and guide them. This does two things - first my brain handles pain better when I see myself touching my affected parts and second if the motion is to painful I am right there to pull the hand/instruments away. It took weeks for me to be able to watch even my husband gently place his hand on my thigh for mere seconds.. I would look away and cringe as all the symptoms would instantly ramp up until I was almost vomiting. Daily as I soaked in a warm bath, I would take his hand and place it on my thigh for 3-5 seconds, then 10. Then we would use a wash a few different textures to do the same over and over again. After many weeks of this I can now tolerate it better when he reaches over and places his hand on my thigh in a loving manner.. not thinking about CRPS. This isn't to say that he leaves his hand on my thigh but, at least my reaction isn't to knock him out when he does it. I don't want him to "think about CRPS" every time he wants to touch me and I don't want to jerk back instantly when he does, as this only caused guilty feelings between us not intentional but they were there. So now.. when this happens, I don't immediately jerk back now, instead I just reach down and lift his hand without saying a word - he know's exactly what/why I am doing this but, there is no guilt and he is no longer treating me like an egg shell, which I don't want. I can also wear clothing now where I was not able to before without putting myself into a tail spin of pain. In order to get to this point I did have to push through a great deal of pain not just discomfort. Did this "work" no.. because if I stop the daily therapy, I will end up where I was before but, by doing it daily I am able to tolerate a bit more stimulation which makes daily life a little less painful.

Therapy, pills, creams, patches, injections, infusions etc., only provide us with weapons against the pain and as pain changes so does our arsenal. If we do nothing but, sit back and wait for pain to subside enough to move, it may be to late.. and now depression, anxiety, fear, dystonia, hopelessness all most likely have already taken deep root.

I was in pt for the first 6 months after diaganosed with rsd. I thought it helped get my fingers and shoulder moving a little better. But my wrist seems to be forever locked. My drs tried prednisone, 8 nerveblocks along with the pt and my wrist still won't bend either way. My insurance company cut me off of pt after 6 months because my pt said there was not more improvement, and and that I was actually getting worse again. So she gave a home exercise program which I'm to do every day. It helps keep my body from completely stiffening up, but my rsd hand and wrist are starting to atrophy. I hope your pt helps you out. I always think it's good to keep moving as much as possible.

I did my therapy prior to my diagnosis. Basically from my 2nd surgery and past my third.

I am a firm believer in therapy. I gained a lot more function in my hand than I ever would have without it. I was very diligent in doing the home exercises and desensitization as well.

I also live alone and often times had to use the effected limb and deal with the pain from things touching it. As much as it hurt doing it, I'm glad I did. While I still have sensitivity it us improved from where I started.

Like right now? I actually was dreaming someone was stabbing me w a huge needle in an attempt to draw blood, I woke in tears w the jabbing pain in both arms. I just cry it's all I can do sometimes

Hangin there mommystime2, I'm so sorry you're having to exist through this nightmare time. Things will settle again though, at least to a state where you can breathe a bit easier than you can at the moment...

I'm a firm believer in pushing yourself, doing exercise, stretching, massage, etc. In the space of a year I've regained a lot of mobility in my leg from doing all the above, and yes we do have to use it or lose it hard though that is most days.....BUT what I was saying in my earlier post is that you can push TOO hard, to the point where you exacerbate your symptoms. Of course being positive and proactive is the way to go, but equally we all have to listen to our bodies - and if your body is screaming NO at you, this might be giving it too much to handle right now.

This is the time when you have to be the one to decide when your treatment is too much for you, not your therapist (or any of us!). No matter how well-meaning and good at their jobs, they are trained to push you to continue through your pain, because for most problems requiring PT, that's the best course of action. BUT - this is CRPS. It doesn't necessarily work like that, and very very few therapists know enough about it to know when to draw the line.

As you know, as we all know CRPS is all about the pain. We spend our lives now trying to damp down those pain receptors, and if you are continually flaring them up from something that is causing you excessive pain, it is stimulating those receptors and increasing all your symptoms. I struggled often with regular PT sessions, with my therapist pushing me to new things. My best improvements have come since I stopped regular PT and did exercises at home myself, as much as I could handle on any given day. They are gentle exercises and stretches that I do every day, and more demanding ones if I'm able. Nothing too repetitive, or hard on my joints. You do have to be disciplined, but it's so worth it. I see my therapist occasionally now if I want some direction or feedback, he's a great guy, and he does know more about CRPS than any other therapist I've seen, but I know my body, and I've got myself out of my wheelchair and crutches.

I really admire your determination to keep going at this despite the terrible pain, and of course I'm not advocating hiding, protecting and inactivity - we all know that's the worst thing to do - but if the pain is waking you crying from sleep, then I'd say you might just need to dial it back a notch. You need to be able to sleep and function and live. Yes keep trying, yes push yourself to do more, but not so hard that you make your life intolerable. A gentle, gradual but sustained increase in activity will do more for you in the long term than a quick push for a level you might not be able to keep going.

Sorry if this sounded preachy, I don't mean too but I know it comes out like that sometimes! I'm just worried for you. I really hope you have a better day today. Keep going gently and good luck. I'll be thinking of you.

Bram

I know the flare was from driving, ur not preaching, I don't normally use the bad arm to drive at all, but the wind was horrible and it was down pouring at times, so I did the little I'm gonna hook bad arm through steering wheel to help out the not as bad arm with control, ya well that back fired I suppose, but the good news is I got my daughter from college! Lol

I am sorry you awoke like this and sympathize with you since that kind of thing happens to me often as well. The knife like and excruciating lightening bolt pains come out of know where and can jolt me from sleep or cause me to scream out in pain anytime of day. I have learned to breath through them lol.. much like during childbirth not that the breathing helps the pain but it takes my focus from it. Imagery is also helpful in those types .. try (hard as it is) to imagine something that makes you happy a memory, a picture a place a smell.. whatever you can do to refocus your brain to something other than the pain along with the slow and controlled breathing. I have asked many doctors about this particular type of pain and unfortunately it has been explained that this is the hardest pain to manage medically if not impossible so we have worked hard together to hone in on the mental coping skills. I'm not gonna lie, it is a daily struggle to and tears do fall sometimes.. but as time goes on I have learned that I don't have to dwell on the pain afterwards. I guess knowing that it will happen no matter what I do or don't do reduced my fear and anxiety about it.

Many things or nothing at all, could have triggered this nighttime pain but personally I think it is a far stretch to blame it on overly aggressive therapy.
Therapy PT/OT/Pain Phsycology etc., have so many other benefits besides the physical aspect. Sure not all therapists understand CRPS, MS, PN, TBI's or even more common things like a torn rotator cuff .. finding the right one is paramount to its success. When a person has trust in their provider (any provider including holistic approaches) there is proven benefits - often related to the "placebo effect". Going in to any provider with doubt, fear or just a personality clash creates less success. Staying within current pain thresholds takes open communication from both parties, if there is doubt or distrust this communication is already broken and in that case it would be better to find someone else. We also have a great amount of fear about things that may provoke/worsen pain but, in order to break that pain/fear cycle we have to do things that cause some pain.. but not to much pain which is different for everyone. For example: if your level of pain is on average a 7-8 and your goal is to get to a 5 then you and your provider should have a therapy plan in place to meet that goal. Questions should be asked about how you/they will help you stay within your current pain threshold and what to do if pain escalates beyond that. The PM doctor should also be very involved with whatever means necessary to help reduce pain especially during this time. Starting slow and building trust with that provider with regular progress meetings between you, them and your PM doctor is extremely helpful. That way progress in either direction can be addressed early on and treatment then is more flexible to each individual at least that is how it has been done with me.

I truly commend you on your willingness and optimism while facing the pain of CRPS, that will help much more than any thing else!

Be careful driving,
Tessa

Always careful driving, if I couldn't drive I'd go insane, we are saving for a special handle to help me hold n steer with. Driving is also my way of ignoring the pain, weird how I drove in pouring rain n wind yesterday for about 400 miles n I hurt but worked through it with radio n long roads but it's possible what made me flare, I'm sure all the caffeine didn't help

lol.. that is a lot of driving! All that extra sensory stimulation and caffeine certainly could have increased your pain but glad you are able to do it since it helps you ignore the pain.. whatever works for you is what is important.

Oh Caffeine.. this is something I know I need to cut back on

Wishing you a better night!