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I feel pain taking SHOWERS!
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I have been on the sidelines of this group forever - reading every day but not jumping in! I almost did yesterday because I, too have hot flashes and get red faced - but some people think I have another auto-immune disease that would explain that so I didn't jump in.

I pretty much have been left to take what I guess you would call "bed baths". I cannot stand to take a shower! I cannot seem to stand the feeling of water hitting my skin and I also seem to have a bad 'thermastat' as I cannot adjust to different temperatures and having cold air outside of the shower and warm water in the shower hitting my skin simply sends my senses into overdrive. On the rare instances, when I take a shower, I feel great (but extremely tired) once I get through it - it's just getting up the courage to do it - that is so awful. I feel so bad about myself - about this - that I don't talk about it at all. My kids have not figured out that I don't take showers (I can't take baths because of my serious back problems and I can't get up and out of the bath without hurting my back - plus I have the same temperature problem sitting in the bathtub - just not as bad. My skin is very dry and builds up from not taking showers - but I definately keep myself from stinking and I wash my hands all of the time - but the water has to be hot......

Otherwise, I am such a woman. I love pretty smells and lotions etc. - but of course, I am not in an intimate relationship or I would NEVER be able to get away with this! I am much too sick to be in a relationship anyway.My husband pretty much took off when I got too sick to take care of him anymore. I am almost always in bed and when I get on the computer for too long - it wears me out for for the day!

I just wondered if ANYONE else has troubles with temperatures and discomfort when water hits your body? I relate so much with the topics the come up on this list - the tingling, burning, numbness etc that is this disease - although for me it's the fatigue that does me in - despite the fact I take Adderall - I NEED energy drinks to get anywhere I go! Help! This whole shower thing makes me feel like a freak.......
Posted on 05/02/09, 01:45 pm
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Reply #1 - 05/02/09  2:20pm
" yup, the water has to be just right! even though I love a HOT shower, gotta turn it down a notch. as for baths, dont take em much yet, taking a cold bath is not to appealing. I remodeled my shower, finished it in 07, what timing, i knew it MAY come some day so I made it a roll in shower, i can still walk, barely and can stand as long as I have something to hold onto, and I dont close my eyes!!! I put in 6 grab bars in my shower all placed in strategic locations, GOD I love my shower, gives me something to be thankful for every time I take one :)

Attitude is Everything "
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Reply #2 - 05/02/09  2:49pm
" Heck, yeah. This is a problem. I was raised by someone who thought a hot bath could cure anything. So I do a strange thing with my feet and calves so that I can take a hot bath. I feel sort of like I am dodging bullets on many days when I take a shower. And, of course, I feel weak and annoyed after getting too hot in the bath. I need grab bars, but for now I am trying to train my cats to call 911 if something happens. I hung around and didn't say much for a while, years actually, but there is no reason for that. Just jumping in is great, it's the only jump I have been able to do in a while. "
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Reply #3 - 05/02/09  3:44pm
" yes!

I've got it both ways, hot & cold. Right now I'm freezing to death and have on 2 pairs of socks.

I don't like being touched by anything muchless anyone. Sometimes I have to push my cat away even!

This disease makes us so mad so how can it now make those around us angry as well?

God how I hate this stuff. :( "
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Reply #4 - 05/02/09  4:06pm
" always. can't know ahead of time if hot or cold or even the touch will hurt.

i've resorted to "luke warm baths" this week (it changes)...which are a real drag. washing my hair in the kitchen sink. that way i can change the temp or water power moment by moment.

i don't know about you but i know for me? not too worry too much about any symptom. before i know it, it's gone and there is somthing new emerging.

just take it easy and adapt the best you can...xokatie "
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Reply #5 - 05/02/09  4:34pm
" I have the same problem. The fatigue I had for 15 years and nothing helps it. Adderell just burned my body up inside - no energy outside. No energy drink for me as my heart is skipping beats and they don't work.

I am sensitive to hot and cold. I can't take bath either because of back problems. I wash hair in kitchen sink. And try to a quick shower praying I won't faint or fall. My dad was in the Navy and he taught us a three minute shower. It still wears me out. I am not dating either because I just don't have the stamina.. no energy. I have had the water hurt my skin before. I had air hurt my skin. Thank goodness it doesn't have all the time.

Sponge bath or trying a very quick shower only options. I need to get the chair where you can sit down and take a shower. Where ever you get your cooling vest will supply the chair and railings.

You are not alone. "
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Reply #6 - 05/02/09  5:26pm
" I had to finally get a shower chair which is to big for my shower so Im back to the wash up baths and my hubby helps me with the shower once or twice a week, and my kids dont know either. I havent been able to distinguish between hot and cold for a couple of years, so its awful, I really appreciate your sitation. We are redoing our bathroom this summer so I can get in and out so I can take showers easier and it will have one of those special pre gages on t that all I have to do is push it and the tempeture is already set. Of course my husband knows nothing about plumbing and I do so I get to teach him, and while on chemo I get to have a project. It seems like everytime I am sick I have a really hard project, maybe thats how I get through. Good luck. "
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Reply #7 - 05/02/09  8:33pm
" This is interesting. I havent been dx'd but I do have fibromyalgia and the shower hurts my skin, but not always in the same place. Sometimes it's fine and don't bother me. Other times tho, it will hurt my chest or my upper back, sometimes it hurts just to wash any part because my skin hurts. And yes, I have had my hair hurt sucks! So what you all are talking about is different I'm presuming????? "
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Reply #8 - 05/02/09  9:16pm
" I can understand where you are coming frombecause over the past 2 minths my husband leavel of pain that he could normaly takehas droped to a bare mimiumhe can not take being on his feet or legs for more than 10-20- min or he starts to loose his balance. He is keeping a headach with all that is goming onwith his MSs.and also they are rechecking him monday for a new bout of diverticklites so any suggwetions please let me hear from you
and by the way he has beed a smoker since he was 23 and he is 50 now and has went from 3 packs a day to 2 cig a day praise be the lord is watching over us
ellen "
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Reply #9 - 05/02/09  9:47pm
" I know what you are saying I cant handle showers nor can I handle baths, when I really couldnt take it I had to control this by sponge baths -washing my hair in the sink, I mean we all have to stay clean, but at times that is just such a pain, when I get this way I have to wash anyway I can. "
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Reply #10 - 05/03/09  1:06pm
" Yes, I'm sorry I didn't say that I have MS among other things.....Been diagnosed for exactly a year and have had MS for what I would guess would be about 10 years.... I was diagnosed with Fibromyalgia and CFIDS and all sorts of things - being treated for eye conditions, pain problems, urinary tract problems etc. AND NO ONE PUT IT TOGETHER! One day a optomotrist who works with my Autistic son - said 'your eye problems are neurologic" and then I had a HUGE attack where I couldn't walk or see and got a diagnosis (a MRI full of white spots) and them infusions of steroids. I have many other problems and am what you might call an invalid - although with my 79 y/o mothers help I am raising my children! I had to laugh at how many people said they washed their hair in the sink! I do that all of the time! For some reason right now my hair is falling out at an alarming rate - but that's another story. I just wish I could take a REAL shower or a bath - but I guess I am doing the best I can..... "

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