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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

New To Board - Physical Therapy Question

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Unread 11-28-2012, 05:01 AM   #1
pasche
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Cool New To Board - Physical Therapy Question

Hi !
I have had CRPS since Aug 2, 2012 . I had to have a sorta emergency operation for my faulty wire for my ICD ( pacemaker/defribulator ) the lead wire into my heart had "noise" ( a short in it ) so they did lead extraction , put a new wire in and replaced the box while they had me open .

Anyway , I woke up in recovery room with both hands and arms on fire and severe pain . Turned out while I was under on the operating table , the Nurse Anethesthtist was supposed to do 1 arterial blood line . She made 9 attempts on the right wrist , collapsed the veins on the right wrist so she move onto the left wrist and made 16 more attempts with that GIANT needle into the arterial vessel , then she finally got it in . For a total of 25 attempts for a arterial line . I ended up with massive hemotamas in both wrists / arms as she also did not apply pressure to stop the bleeding from the veins . I was black , blue & green from my elbows to my hands and now I have CRPS in both hands and arms up to the shoulders . The burning has spread to my central nervous system ( 1 month after operation ) and now I burn head to toe . Eyes , mouth private parts , just everywhere . The achy pain and deep pressure and stiffness , and deep burn is in the arms and hands .

I was able to get in with a good Dr . He has ordered PT for me and I started last week . I asked several times are you familiar with CRPS and how to treat , as well as how many has she treated . She assured me she has worked with many over the years .

My questions come in on treatment . The first visit with the PT she did an evaluation of me ( as ordered ) strength , movement - measurements of fingers etc... then she wanted my range of motion . I could not put my left arm up over my head . She asked me to see of the right went up and around , so I did it , and other stuff she asked me to do ( but I was burning and I told her that , but she just shrugged it off . Then she asked me to do a contrast bath for my right hand . I swear the water was almost boiling hot , I could not put my hand in it as it was too hot and burning me . She looked at me like why not ? I told her it was too hot and there was no way I could do it . She had me do hand exercises and waited a while and then told me I should try the contrast bath again . I got my hand in and kept it there with great pain for a minute then the cold water.

I got home that night hurting and burning . I could not sleep all night from pain and twitches in my right hand , I was up all night with pain and burning till I passed out at 10:00 am the next day . Called her on the phone and told her what happened and she said " good , now that we are over the initial pain from the first visit we can get on with PT "

Second visit was last night and she gave me all exercises and range of motion exercises . She asked when my next Dr Visit was and I said Dec 14th and she said she wanted to get my range of motion back . " my goal is to get your range of motion back " I asked well what about the pain and she said " pain killers will take care of that " I said to her " the pain killers don't even touch the burning I have '

Is there something I am missing here ? My Dr gave me a PT order to go to a PT of my choice . It is ordered for evaluate and treat and then is says stress loading - isometrics and desenzitation . None of which we are doing ??

She has me lifting 2 lb cans - walking fingers up walls ,making O's with fingers , shrugging shoulders , making circles with my shoulders , wrists .

I also informed her I read on the *edit* absolutely no contrast baths - so she took that off my PT .

Sorry for the long post . This is my first time posting and wanted to add in about my injury that led to this CRPS .

pasche

Last edited by Koala77; 11-28-2012 at 05:11 AM. Reason: No links for new members
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Unread 11-28-2012, 05:45 AM   #2
birchlake
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Unfortunately, just because this therapist said she has experience with CRPS doesn't mean she knows how to treat it. And I don't think she does.

Physical therapy, especially out of the gate, runs a very fine line. Gotta get you moving, but can't aggravate the condition. Which contrast baths (unless lukewarm/cool which only "some" can tolerate and provide benefit to) can certainly do!

If it were me, I'd consider trying a different therapist. I had to use 3 of them before I found the one that was a complete "student of the game", understood CRPS and over time, gave me my foot back. With NO contrast baths! In fact, when I first started, it was the doctor that recommended contrast baths, but the physical therapist said NO.

Remember, it's your body. Don't feel guilty if you have to move on and try a few professionals before you find your "team". It's part of the game with CRPS.

Good luck to you!
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Unread 11-28-2012, 10:46 AM   #3
Morgan Herritage
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You have to start slow on things like this. Just simple desensitizing, working on range of motion, maybe building some strength in the extremity affected. In my case, my hand is affected so I don't use my right arm much, so he works my arm out to make up for lost strength. You are probably in a different situation, but still most likely have pain using what ever extremity linked to your rsd. The PT should be able to gentally stretch and work your nerve region affected. Some use tens, mine didn't. Some do biofeedback or neurofeedback.
But in the end, the only person that can help you most is you. Tell him what hurts or is uncomfortable. What seems to work, and if it doesnt feel right, try finding a new PT.
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Unread 11-29-2012, 01:14 AM   #4
Kevscar
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No Ice, No contrast therapy and no aggresive therapy all these have been proven to make things worse. I was given the second 2 and by the time I got to see a specialist 10 minths later he told me because of what they had done I stood no chance of ever having remission.
As to the Nurse Anethesthtist I'dbe taking legal advice
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Unread 11-29-2012, 08:11 AM   #5
fmichael
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Hi. All these comments make good sense. Let me just add one of my own

I had mixed results with PT (at best) for something like 9 years, off and on, until my neurologist sent my to a new office. Turns out that they - along with a number of other practices in LA - now hire only those therapists who have the 4-year, post-graduate degree of Doctor of Physical Therapy (DPT).

And it makes all the difference in the world! These folks have spent time in school doing actual cadaver studies and have an incredible knowledge of neuro-anatomy. In contrast, most PTs are trained to approach every problem in terms of muscular-skeletal injuries, so they immediately default to "strength-training," which does more harm than god in treating people with CRPS, save and except that they are in fact mobilizing their injured limbs. In contrast, my DPT oriented her work around "nerve gliding exercises." Turns out that nerves constrict under the barrage of constant pain as much or more than muscles. And after a couple of months, spasms that had been debilitating for years were suddenly under control!

So, no offense to your PT, but you need someone with one more letter in their title. RSD/CRPS is first and foremost a neurological disease. And you need a therapist with an understanding of nerves. (And at least from my perspective, 11+ years on, it's a no-brainer.)

Mike
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Unread 12-01-2012, 12:28 AM   #6
cuffs558
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I also agree with everyone else's comments. It's tough to find anyone who truly knows this disease without the trial and error route and we the patients end up to be the ginney's most of the time. As 100 people could have this disease and 90 some could be different then the other on a sliding scale of where they are at with it. I have found that for me heated water - not hot or cold- but a constant warmer temp pool or hot tub helps for a bit but not to do to much as you will pay for it later. When "normal" you fight through the pain to get to your goal. Not with rsd. When the pain is elevated STOP. The meds take the edge of but the cream allows me to wear clothes, & exercise just prior to elevated pain keep you moving.
good luck my friend...
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