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)


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Old 09-20-2013, 03:27 AM #11
Brambledog Brambledog is offline
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I hesitate to say this because I'm in the Uk, and things might be different for you over the pond but there are some privately run hydrotherapy/aqua therapy pools around, a couple near me - and I'm in the sticks really as far as big towns etc goes. The only reason I don't go is cost, but it's nowhere near as pricey as I thought. I rang and enquired, and they said the main pools are kept much warmer than normal, and they heat the whole building exactly because their clients hate the chill when stepping out. When I did do hydrotherapy, they kept towels by the pool edge to put round us as soon as we got out, and I took my own towelling robe after a while because that was even cosier!

It might be worthwhile having a look on the web, or asking at other therapy places like chiropractors, herbalists, massage places, beauty salons etc. they usually know where the privately run places are - they aren't always big advertisers, usually because they don't need to. I had to stop going to hydro because I was only allowed a prescribed period of time on the NHS, and after that it's pay or don't go. I couldn't pay so I don't go

Good luck, and I hope you can find somewhere - if it really helps then its worth pushing for if you possibly can.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 09-20-2013, 06:05 AM #12
Allanira Allanira is offline
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The only private run ones we have will be at a gym for rehab center for addiction. The places they send us for therapy are normal everyday pt places that don't have the facilities to have a pool.. its rotten but there it is.
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Old 09-20-2013, 06:57 PM #13
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Heart pool therapy

hello zookester...I have been diagnosed with hypersensitivity of the central nervous system, I am not happy with this diagnosis you can read my bio and tell me if you had an of my experiences...as for the POOL..i have taught aqua fitness for many years and now I totally depend on it to keep me moving...if the days the water is cooler I take a shower with the water as warm as I can stand that day and even use a heating pad on my legs that are affected the most...try this I find it soothing!
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Originally Posted by zookester View Post
Hello All,

I was hoping that maybe someone might have any tips or things that have worked to keep the CRPS limb warm in a pool that is causing increased pain due to temp. Our local pool is only 85 degrees and is causing a huge increase in pain during and after use. I really want to continue this therapy but, I also don't want to increase meds in order to combat the after affects. The first pool session was just on Wednesday and I hadn't really gotten pain under control before trying again today and now WHAM I am struggling to keep composure. This makes me so sad.. anyone else out there that has experienced this or found something that made it doable?

Thanks in advance,
Tessa
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zookester (09-25-2013)
Old 09-25-2013, 09:37 PM #14
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Hi . I had the same problems with the water temp at my aquatherapy sessions, so I had to stop. It hurt going into the pool. It was so cold and we asked to raise it, but it still wasn't warm enough for me. I loved it so much but had to stop because of the pain it caused with the water temp. The exercises were helpful though. I also had to get two surgeries done for a complete hysterectomy so I couldn't continue until my staples were taken out and I healed. but I decided not to go back though after that because of the cold water. I hope you can find a pool now that's warm enough. I don't have any other places around here to go. I try to go on short walks in the nice weather. I won't go out in icy and bad weather anymore for fear I will fall again and break anther bone and aggravate the rsd. I also do a home exercise program that pt gave me. It's not as nice as the pool but it's better than nothing. I used to love to swim and go to the beach, but those days are over for me now because of the cold. Plus I can't stay out the sun because it makes my skin blister even with sunscreen because of the rsd. It stinks but I have to accept it. Take care and hope you have a good night.
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Old 09-26-2013, 06:30 AM #15
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I live in NM you would think the water would be warm in an outside pool but guess again lol. My in laws have a pool I got into once but not again unless the temp is reading around 120 lol. I think a lot of the meds cause sun sensitivity. I used to swim all the time and lay out and play in the sun. No more. Good thing I do have the inlaws because I can ask them to take goober boy out to play till his brother is older then I will be sitting on the porch watching them. Wishing I could go out and play too. I wish there was a way we could afford a deep hot tub that I could do exercises in but thats a no go unless I found one for $20 lol. I am going to look into aqua therapy when I move back to MY home and see what temp they keep it at and if they will raise it for when when I come in. If not then I will be wearing my floors down with walking and then laying on the floor to do other rom exercises. I have never liked cold weather.
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Old 09-26-2013, 07:17 AM #16
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Allanira,

120??? was this a typo or can you really stand it that hot?
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Old 09-26-2013, 07:39 AM #17
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The hotter the better to me lol. Just keep the iced chamomile tea coming and I am a happy camper. Even as a kid I didn't do well in the cold. I like tomsay im like my ball python in that cold sends me into hibernation lol. Plus now with this beast riding me its worse lol. Think of a giant pack of chihuahuas hanging onto your leg and nipping and barking. Annoying. Every year I say im gonna go to South America to get away from the cold yet I never do lol. Any temp below 70 and I want to curl up in a dark warm hole till the temps start rising again. We had a nasty blizzard last February and I didnt leave the house till all the snow was gone and we were the last house on base to have any snow lol.
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Old 09-26-2013, 07:59 AM #18
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Lol! I thought that too zook

I love chamomile tea too Allanira....I love the fact at it is delicious whether it is hot or left to go stone cold

I long to have a hot tub.... Every now and then I mooch round a few hoping to goodness a sale sign has a realistic figure for me.....like £20 lol. Not yet, but I remain hopeful. Haha.

So far I'm ok in the sun if I'm covered up in nice loose cool clothing, have plenty of lotion on and stay in the shade as much as possible. Oh and wear a hat. And don't wear anything contstricting on my left side or either foot. When we were on holiday this summer I could paddle quite happily in shallow warm waves, but anything really cold was a definite no, I wouldn't even consider getting into an outdoor pool unless I could see steam rising from it!

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 09-26-2013, 08:07 AM #19
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ah okay. I understand the pain of cold intimately.. it is 34 here this morning brrrrrrrrr. My husband was so sweet and stoked up the fire and brought me in plenty of wood Last year I had a heck of a time managing bringing in wood while on crutches.. what a sight that was! Although I differ in that I have spent more time out enjoying activities in cold weather like skiing and mountain climbing for as long as I can remember. It breaks my heart to think that I might not be able to enjoy these things ever again.. I haven't given up yet and will go down fighting but, the reality is dangling in front of me.

For me the pain gets worse when the temps change to much in either direction. The heat is far more tolerable though even at extremes. Planning a trip to Hawaii in Feb. but if our weather stays in these temps much longer and I can't figure out how to ease its effects then I may move that trip up!

I know you mentioned how far you were along some time ago but I have forgotten.. do you mind sharing?
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Old 09-26-2013, 08:14 AM #20
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See you know what I mean Bram lol. I went into the water a couple of times at the shore in England. That water was COLD! Lol at least to me it was. My friend and his dog went in no problem. If I could find a hot tub for cheap I would get it. I know what you mean by steam on the water of pools there. My husband brought me some water last night while I soaked out my "chills" and the inflammation and hopefully a little of the pain and he couldn't breathe with how much steam and heat was in there lol. I like heat. I haven't really had a problem with the sun. But im also not on any treatments for another 14 wks at least. I will go out in the sun for a bit but I have to have that leg covered. It sucks when I can't enjoy the sun like I use to. My legs are as white as my socks and I bleach them lol. I used to love hiking around in the mountains also and dragging my poor dog that hated it ( she loved the smells and flat parts but not the up or down hill). I WILL do that this summer. Take both my boys up and make sure I have someone with me so we are safe. Ah a new adventure. I think thats how I am going to think of this disease. A new adventure. See what I can push myself to do. Thanks guys yall just gave me a good idea and frame of mind.
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