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 10-06-2015, 04:37 PM #1
89danboy 89danboy is offline
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Default Taking showers puts me in a flare up

I use to love taking showers ,now everytime I take a shower after I get out I dry myself off and then start my routine.within a minute or two I start having body temperature changes ,my head goes into a cold sweat ,all my skin imperfections turn colors that I can't stand to look at.my body feels like I'm having a sugar attack.so I put on my clothes and collapse on the couch and my body takes two or three hours to get my body temperature / skin temperature back to normal.i use to cook all the time too.that puts me in the same kind of flare up.they are brutal to deal with.do any of you have this type of reaction to things like this.its bad enough I'm basically Bed riddin anyway.only place I ever go is to a dr office,and half the time I cancel from feeling to horrible to get out of bed.anywAy I was just asking if any of you deal with flare ups from showers or trying to cook. God bless all of you and I prey all of you go into remission
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Old 10-06-2015, 04:55 PM #2
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Yes to the water temperature.... Unless it's just right, I can have a massive flare. Even if I have the temperature right and the water pump changes....then I can't warm up. Ldn keeps only most of the hot flares away....so as I am cold most of the time a warm shower does help.
Also I get very fatigued.... So rest is important....... But I also try to keep moving.....hard but I try....cooking is hard....I forget what I am doing.....so you are not alone.
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Old 10-06-2015, 05:09 PM #3
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I have had minor flares when taking a shower. It usual comes after I get out and the cooler air of the room gets to me. I have tried taking a bath instead but that was even worse. As for cooking. I am so bummed out. I love to cook, and my family and friends love my cooking. Since this all started back in January, I have not been able to do any cooking at all. It has been all up to my husband.

Alaina
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Old 10-06-2015, 06:57 PM #4
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Default Ldn

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Originally Posted by Enna70 View Post
Yes to the water temperature.... Unless it's just right, I can have a massive flare. Even if I have the temperature right and the water pump changes....then I can't warm up. Ldn keeps only most of the hot flares away....so as I am cold most of the time a warm shower does help.
Also I get very fatigued.... So rest is important....... But I also try to keep moving.....hard but I try....cooking is hard....I forget what I am doing.....so you are not alone.
How much does the LDN help you,I wanted to try it,I ordered some overseas but haven't tried it yet.i have to be off all of my methadone befor I can try it.i also have debilitating chronic fatigue.has the ldn helped that at all.life is horrible to deal with all this .i know you can relate.im also gonna order nerodronate and try that down the road,I found an Italian pharmacy that has it.im at the end of my rope,I don't want to live life if it's like this,I will try anything to get better,Drs won't try anything new.
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Old 10-06-2015, 08:13 PM #5
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If docs won't try anything new, then it's time to find a new doc. There some great CRPS docs in your neck of the woods. I'm blanking on the name of the one that has some good youtube videos up, hopefully someone else will remember.

Have you tried baths? I find they help me reset my temp. You might need to have a heater in the bathroom. You can have a small wall one installed, and they work well.

Does the direct spray bother you at all? Mine did until I put in a new nozzle that is the large circle type.
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Old 10-06-2015, 10:26 PM #6
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I am bedridden also. I almost always have a flare from taking a shower. I breakout into a cold sweat, and I get really shaky. Something that has been helpful for me is having a shower seat. A friend picked up a brand new looking one from Goodwill for me for $2 (she spent more money on the bleach I asked her to use on it Lol.) If I get too shaky I sit down and sometimes it helps if I turn the water off. As for cooking, for the most part I don't attempt it alone anymore, but if I'm having a good day I will get into my wheelchair as early as possible in the day and roll to the kitchen. I will gather food from my pantry and start light prep for dinner. Then throughout the day I do more and more little bits at a time until I finally have completed a nice meal for my family. The other thing I have found to be invaluable is my slow cooker. Reynolds brand makes a product that is called slow cooker liners. They are sold right beside the tin foil. These liners are great. Sometimes I will pull my slow cooker out, put a liner in and then have to rest. I have found tons of great slow cooker recipes online. I always cook a protein or soup in the slow cooker. I look for recipes that you just dump everything in with minimal prep. Then I make a big salad from bagged greens, cherry tomatoes (whole) and any other veggies I have in the fridge. If I don't have the greens for a salad, I always have lots of steam in the bag frozen green veggies on hand. I make an easy grain (rice, baked potatoes etc) for the other side. Then it's a well balanced easy meal. If it's all a bust I just roll back to bed, watch more food network and call it a day. I'm really interested in how others have learned to make cooking less laborious.

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Last edited by stillsmiling; 10-06-2015 at 10:46 PM.
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Old 10-06-2015, 11:55 PM #7
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Showers killed me, too until my husband picked up a shower chair for me. I had to put a thin towel on my legs and shoulders to soften the impact of the water. I keep a heater in the bathroom just in case I will need it in the colder weather. I spent weeks this summer slowly adjusting the water temp so I could bear cooler water. I did this so I could tolerate pool water at 84 degrees.

I bought an adjustable height, wheeled stool to work in the kitchen. It cost about 50 on Amazon. It was worth every penny. I love my rice cooker, because of it I can make a fast Korean egg fried rice, with scallions and sesame seeds. The irony of this is, I bought the cooker because it was cheap-I always hated gadgets like coffee and bread makers in my healthy past. LOL I used to keep my vintage iron pans beautifully seasoned-my husband scrubbed them until they are a mess. I just don't have the energy to reclaim them, so I bought a coated skillet.

My husband has to do most chores around the house, because I have no stamina. I tried to clean a few things recently and nearly passed out. My gastroc muscles do not support me properly with the result that my right hip gets pressured and I get excrutiating pain in it and my butt-so I cannot sit, or stand or lie in most positions. My sister calls me a "Jack in the box," because I pop up and down trying to get in a position which does not hurt me.
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Old 10-07-2015, 07:27 AM #8
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Quote:
Originally Posted by 89danboy View Post
How much does the LDN help you,I wanted to try it,I ordered some overseas but haven't tried it yet.i have to be off all of my methadone befor I can try it.i also have debilitating chronic fatigue.has the ldn helped that at all.life is horrible to deal with all this .i know you can relate.im also gonna order nerodronate and try that down the road,I found an Italian pharmacy that has it.im at the end of my rope,I don't want to live life if it's like this,I will try anything to get better,Drs won't try anything new.
My dose is 4.5 mg. There were side effects, after three months it subsided. But for me it only mostly works on my hot flares....nothing else. And I ve developed a tic....hope this helps.
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Old 10-07-2015, 07:31 AM #9
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Bio and still.....thanks for sharing.....those are great tips. Were I am staying there is a built in heater into the bathroom....so when that out of shower chill hits, I use this fixture. And I like the idea of a towel so the shower water doesn't sting....great help
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Old 10-07-2015, 08:23 AM #10
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I flare in the shower too. This has gone on basically since this started. The warm water combined with a dependent foot makes for a red lobster looking tootsie with a lot to say about it. Since ketamine I am able to shower at the gym right after getting out of the 82 degree pool but I don't push hot water. I have been afraid to try showering any other day. My trick is to take a bath with my CRPS foot resting on the edge of the tub out of the hot water.

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