I have CRPS in hands/arms/feet/legs/face-I know i cant take winter weather or be in airconditioning. I do hot water therapy and if the pool is under 87degrees it sets off my pain. Since i started water therapy my walking and arm movements have improved and my skin sensativity has really improved. I was wandering in time will i be able to get in a cool pool in the summer, or go in the Ocean?
Once you were diagnosed were you ever able to go in a pool or Ocean? Has it changed over time?
I also found that in a hot tub i cant take it too hot(over 100) or it sets me off, or if the temp. outside is really hot(90's) and humid-I feel swollen and ache-anyone else?
momof4

I'm sorry I can't answer your question....but i was hoping you could help me. My daughter wants to use a neigbors pool that is set on 88 degress to see if it will help her CRPS. Can you tell me excerces you do for water therapy?

Slowly walking forwards using a kickboard to rest arms on, then walking backwards, then walking sideways reaching arms out at sides. In the beginning I could barely walk it was too painful so i only went a short distance. If pain increases stop but if pain stays the same I continue. As I got better walking they had me walk forwards and swing my arms (as you do when you walk). They started everything slowly, 4 repititions only to make sure didn't cause a flare. With hands at sides small arm circles, shoulder rolls. I still only do 4 repititions of one arm exercise at a time. ie. 4 arm circles, walk, 4 shoulder rolls, walk backwards... Honestly I was considering using a wheel chair because walking was too painful and my toes were curling- it's been 3months of hot pool(87-91) and I am able to walk with less pain and my toes are not curling under. My shoulder was almost frozen and I now have more movement. The most important thing is for her to listen to her body- so she doesnt cause increase of pain. Best of luck. momof4

The first time I did warm pool therapy was back Iowa in the 90's. It did wonders for the Fibromyalgia I have had my whole life. I was one who was determined to have been born with Fibro & I think unfortunately my little 4 yr old has it also. He had Kwasaki's Disease as an infant & that almost killed him, but it also set off Fibro I believe in him. He hurts ALOT..........poor baby just like I did. When I moved ot Cali near Sacramento, there was no where to find a warm pool for therapy & anything below 89 dgs sets off my Fibro. Finally in '05 there was a warm therapy pool built in Folsom that is indoors. I didn't know this until I had major back surgery in 05 & was sent to it for PT afterwards. When my PT ran out due to Medicare they switched my dx for pool therapy for RSD, because there is no limit to how much money or how many times you can go to pool therapy if you have RSD unless they have changed that ruling since 05. I had to stop that threapy due to the cost of gasoline going so high as I live approximately 35 miles from Folsom & my husband & I both are disabled & on Social Security & I also get LT disability insurance payments from the last job I had before RSD came to roost in my feet in 03. I just wish I had worked longer at that job so that my LT ins. payments was higher. I again went to pool therapy last year because I again had to have major back surgery. I have to admit doing the warm pool therapy got me out of my wheel chair while in my home. I am also able to walk into say WalMart & use one of their shopping carts also. I never use to be able to do that & I know it was due to the warm pool therapy that this happened. That & the back surgeries got me where i am today.

I don't think I will ever be able to get into a cool pool again. And if you live down on the Gulf of Mexico, you might be able to get into the ocean down there. The water is very warm in the Gulf. I lived in Louisiana back in the 70's & if I am remembering correctly it was very warm water.

So keep up the warm pool therapy. It is good for most any ailment we have. The exercises that RNcrps2 gave you are what I did also. To build up my back muscles I also used devices that made the resistance of the water work more for me also by lifting my arms up thru the water & other excercises like it. They also may have weights to put on ankles if able to to make your legs stronger also. Good Luck!!

DebbyV

Thank you so much for your reply. She has CRPS in her LT knee, ankle and foot. We will try the what you suggested. We are doing home excerices at home now and she seems to always be in 8 or 9 pain levels. PM Doc just tells us to work through it, I'm just nervous that she is pushing to much. She has had two nerve blocks in the last month but they only worked for about 10 days each but they did bring her pain levels down to a 3 on the first one and a 5 on the second one. during that time she was able to do a lot of PT. Doc says she can only get one more, and will only give 3 in a six month period. She hadn't really experience these high levels of pain until now. It is just so hard for her to do the PT and be in so much pain she cant do anything for the rest of the day. Sorry I'm rambaling on, new to this site and your the first person I posted with.
Thanks again for your reply

Hi for me and of course everyone is different but I need a firm and stable ground. Sand would make my ankle/foot turn out which would cause a flare up. I can see though if there were not so many barriers how the ocean could be calming.
Rachel I am sorry about your daughters increased pain. Have you tried changing the form of PT she does? I guess I feel what mayhelp one person may not another. I know hat PT can increase pain but in the long run hopefully it helps but some pain is just too much to take. I have a friend for ex who like massage and for me that would increase my pain to a intolerable state. As for the pool at Cleveland Clinic we used those noodles and dumb bells for the pool. If I ever go back to the pool I am going to get those items and also try walking back and forth. Welcome to the board though I am sorry for your daughters pain

Hi Momof4, I live in Arizona and have a pool. Can't tell you how much the pool has helped by body. On RSDSA I read pool temp needs to be 86 degrees. We have a heater on the pool, so I always set the temp at 86. At one time my toes were curling up off the floor,my Dr. had me in the pool every day and swim with squeezing my toes inward. After 4 months, my toes were touching the floor. It also has helped my hands. I was misdiagnosed and not diagnosed for 4 years. Lost 50% use of left hand, it's like a claw. I've kept my right hand flexible from swimming and feet legs.
I got RSD following surgery of breast. Got frozen shoulder. Had 100 physical therapy treatments. and massage treatments to get use of shoulder. I believe the swimming has kept it flexible. I've used light velcro weights around ankles to strengthen legs. a belt around waist can be nice for walking exercises, You could go to a ymca and see what kind of stretching exercises they do for the older group exercises. It's really helps with keeping mobile, stretched out.
I personally wouldn't swim in cold ocean-maui is nice in the spring till fall.
I've read somewhere hot water is not good. I know during the summer here 100-116 is unbearable. Especially since I have full body RSD plus internal RSD.
I hope this helps. I think water therapy is the best way to keep muscle tone. i know I've gained weight from high dose of neurotin and some other meds and am goiong to try to loose thru water exercise.
Hope this helps some. your friend, loretta

I'm not sure that I can answer any questions about swimming in the ocean, but I am really familiar with cold water here in minnesota. It really sucks for my RSD. I can only speak about my experiences with aqua therapy and it has been a blessing. I am blessed to have an Athletic Republic club with an endless pool eight blocks from my house. I usually try to go three times a week with my wonderful wife. The coach turns the water up to 92 degrees and it is true heaven. I have the RSD in my Right ankle, foot , calf, and knee. My plan from the beginning was to distress the limb and work like a crazy man through the pain. However there is a fine line of over distress the RSD. Too much will cause a flare of imaginable proportion. I believe I have found my distress level for now. We usually spend about an hour for therapy with half of it focusing upon my upper extremities to compensate for what may happen in the future with my right limb. I have noticed that cold, no matter what form will cause my RSD to flare. Keeping my limb warm has been a battle. Over the winter I was in bed about 10-18 hrs a day due to the pain. As the weather warmed up I have been able to have more freedom.

I had several sessions in a warm water aqua therapy pool (93 degrees) but the WC insurance wouldn't authorize any more..
I am paying for it out of pocket now and stay later at work and take a half hour lunch to make up for the time I go to the pool which is near where I work.
I do the exercises independently now which I learned from the P.T. therapist.
I have RSD mainly in my left limb, but also in my right.

I "walk" laps in the pool, forward, backward, and sideways, too. I can't do this very well out of the water, so it is a blessing to have the semi-weightlessness of the water. I also cautiously do stretches and leg bends, and upper arm movements with paddles,etc for some cardio and to keep my upper body flexible.

I do gentle bicyling motion with my legs with flotation devices on my arms.
if I overdo it, my foot flares painfully. Another problem is my hip and lower back flare, so like, Krank, I try to find a balance of movement so as not to over do it. the aqua therapy has really helped with the edema..

The BIGGEST benefit is how good it makes me feel mentally! The soothing warmth of the water, the freedom of movement, and the company of others in the pool who also have challenges, make me feel happy and that is so important!
When the weather gets really warm, I may also try the YMCA outdoor pool which is kept at about 85 degrees...but the warm therapy pool is the BEST !

I used to body surf when I was young, and I would sure love to get in the ocean with a wetsuit (and prescription googles ) and try that again!!! I would have to be very brave to overcome my fear of risking injury and/or creating a huge flare ( I need an aqua scooter! )
Hugs from Hope4thebest

Hi Mom, I have done some bobbing around in the ocean during the late summer (August) in S. Carolina when the ocean is very calm, but I take it very easy and my adult children assist me out past the break point. I do not have access to a pool, but the movement of the ocean seems to make me feel better. Lisa