warm water sensitivity
AnonymousMarch 5, 2009 at 8:35 am
They told me and I know that -along with my CIDP, I have severe sensory loss in my hands and feet. As most know, I still am pretty able to do most things just a whole lot slower than a healthy person.
I dont feel my feet or hands to scratch them or pin poke them. My feet are now to the point that I cant move any of the toes on either foot and on the first foot affected, the toes are curling b/c of the paralysis. I cant do ankle circles or lift them up. I walk most times with a cane and can wear nothing but tennis shoes.
However, I AM blessed to walk at all.
Ok, so…I recently had the episodes with the burning hand like it was literally on fire. I tell everyone that pain was the worst and if it was constant, I could NOT live with it. My pain mgnt dr told me yesterday that it’s nerve damage. I kinda knew that.
Anyway…after I’ve had an episode of the severe burning hand,,,(it only happens in the night and carpel tunnel was ruled out)…the next day or two , I cant stand warm water on the hand b/c it burns, too…to a much lesser degree.
Does anyone else have sensitivity to warm water ? Why isnt this constant ?
I certainly am not wishing for it to be…not my any means ! I just wonder…
AnonymousMarch 6, 2009 at 3:15 am
I have sensory problems all over my body, and warm anything can cause problems — I hate hot weather and tend to take lukewarm showers. My neuro thinks it’s because warmth makes the nerve impulses run faster, which because of the demyelination then causes the sensations to shoot off in all directions.
AnonymousMarch 6, 2009 at 7:26 am
It’s so strange b/c it used to be that I didnt really notice how “hot” the water was.
When I would take a bath, I’d run out of hot water very fast and one day I asked my husband to feel the water that I was bathing in….to him it was very very hot…to me, it wasnt hot enough.
But, now, with the hand…it’s a whole new story.
Thanks for sharing.
AnonymousMarch 6, 2009 at 3:51 pm
I’ve had two bad CIDP flares with sudden severe muscle weakness and pain/numbness/hypersensitivity to hot and cold things. Both times when the CIDP was flaring, I noticed that a bath or shower really increased the painful sensations in my hands/feet. It feels like walking on ground up glass or something. I also noticed after exercising, if my feet were sweating the sensations were worse.
For me, what has been worse than the bad sensations from hot things, has been my hands/feet being hypersensitive to cold. That is how I realized I was relapsing this past November. I took a bottle of water out of a friend’s refrigerator and remarked that their fridge must be set REALLY low because the water was so cold, it felt like a frozen bottle of water to me. Other people said it just felt like normal fridge temperature. Washing my hands in normal cold tap water felt like sticking my hands in snow.
AnonymousMarch 7, 2009 at 11:56 am
My temperature sensations are all messed up. Sometimes hot feels cold so the hotter the water is in the shower the colder it feels and cold feels hot so my fingers are numb but feel hot. And sometimes they just feel like things are not cold enough, not hot enough, or too hot or too cold. Fortunately those sensations are not constant with me, the come and go as my disease flares and settles back down. Try to find a part of your body that senses temperature correctly before you get in the shower… 😉
AnonymousMarch 9, 2009 at 12:47 pm
I try to remember where the knobs are turned to when the temp is OK. That way I generally get the same water temp from shower to shower.
Stacey, I am totally without a clue as to why the symptoms come and go. I mean I appreciate the times when I am without the symptoms, but I wonder what things change inside the body to give me relief.
Regarding hot water, If I sit in a hot bath for too long, like 45 min or so, I seem to get a little worse for a little while. Like the numbness ratchets up a notch. But after a day or so I get back to where I was prior to the long soaker.
I just love a long hot bath in the whirlpool tub. The relaxing upside outweighs the aggravating downside, But I don’t do it often, maybe three times a month or so.
AnonymousMarch 9, 2009 at 2:14 pm
It’s been a few days since I’ve had a hand episode. I can tell you that today, I am either in a flare or paying for a big “over doing it”. I’d like to take the latter. I dont think I have flares if I’m a slow progresser…but then again, I must b/c the hand incident is a flare, isnt it.
My niece had her baby Saturday morning at 6a . I was there the whole time starting Friday late afternoon. I got home Sat morning at 10a. Well worth it…we now have this beautiful little addition to our family. A baby boy.
I didnt get to nap on Saturday for more than an hour so all together I’d had maybe four hours of sleep. We went about our Saturday as usual and went to dinner that night. Sunday I went to Walmart and did the grocery shopping, went to see the baby and did four loads of laundry.
Way too much ! Today I am barely able to walk and every time I wash my hands, the barely warm water to the left hand -burns the right hand fiercly.
Tonite I am going to do what I call “butt the couch”. 😀
I’ll get my lil chores out of the way as soon as we get home and then butt the couch for the rest of the night.
I’m so excited ! I cant tell you how tired I am today !!!! Yikes.
So strange how we all have these different sensations. Nobody really has an answer and so we learn to live with it. Take it as it comes, enjoy and feel blessed when it doesnt. I think what I am most scared of is that I’ll wake up to have my right hand like my feet. Completely numb with no use of my fingers.
I go to the neuro tomorrow and I dont imagine he’ll have much for me in the way of answers or solutions. He’s just going to do the typical exam and ask how I’ve been. He’ll have no magic wand to wave or no cure me meds. Why waste my money going to see him anyway…and then I remember, I’m going to ask that my IVIG gets moved closer together and try that for the next three mos.
I’m sorry there are so many like me…all of you that suffer this, too.
Praying for an answer,
AnonymousMarch 10, 2009 at 4:47 am
I too have altered temperature sensations on my skin. Every part of my body registers a different temperature! My feet/lower legs are insensitive to cold water and hotish water makes my skin numb and ache. So, I haven’t had a nice hot shower in winter for years. I also find, my feet will register that they are cold even when they feel warm and visa versa – so wierd!
I always add cold water to my tea/coffee as my mouth doesn’t feel temp’ that well either.
Like you my feet don’t feel pain that well – I must have kicked my foot the other week on something, as my toenail was hanging off and all I felt was an itch were the nail had been.
Like you said, we all just find a way to live with it.
Congrats’ on the birth of your new family member 🙂
AnonymousMarch 10, 2009 at 10:44 am
I’m in my 4th year of ivigs, two every 4 weeks. for the treatment of CIDP. My hand sensations are improving,but they feel at times like they are on fire,especially after using them alot.My legs are “numb” from the knees down,but I am starting to feel temp changes. I still have drop foot on the right side, but I am improving. Hang in there ,but don’t overdo ,which is a fine line.
AnonymousMarch 10, 2009 at 11:28 pm
In regards to going to the Dr. every three months, nothing new, take blood, do the exam, nothing new, how do you feel? Nothing new, why do I still go? On and on, on and on.
I am so with you. It is so frustrating.
But then again, we have choices, they are just different. I still hope, but I also accept. I would love a cure, but I don’t expect one. There are many things we can do to lessen our pain and lessen the severity of our symptoms. I think it is important to share them when asked, and to share the news that we can live with this nasty thing we have unwittingly acquired. We CAN live with it. Don’t have to LIKE it.
I think you know where we are.
Take care, I think of you, and hope things get better.
AnonymousMarch 11, 2009 at 9:29 am
I’m ok. Frustrated , mad, scared, yeah, I am. But, I’m ok, I’ll be alright.
My Dr said that my exam was about the same. NOT good b/c I’m not any better. But at the same time, the exam was good b/c I’m not alot worse.
We’re going to move my IVIG’s to every two weeks now. I’m not sure on the exact orders b/c I havent heard from the home health nurse yet.
I asked if I’d be getting the same amt and he said yes.
I dont go back to him for 6 mos. September….the month we’re going to Disney World. I got a bit panicked when I thought about that. How am I going to survive such a trip with all the walking and constant going.
But, it’s for my son…I refuse to let him down…and I’ll be just fine. I cant wait ! I can rest while we’re there. A little ? Ok, maybe not…but, I have an awesome husband and he’ll help if I need it…Actually he’ll help even if I dont.
The Dr didnt say anything when I mentioned the sensitivity after a burning episode in the night. I suppose he didnt have an answer. I told him all about it and he scribbled on my file as he always does. He said absolutely nothing and I didnt push it…I dont know why I didnt press him for an answer. I regret that today.
I noticed that I wasnt feeling the vibrations on my hands when he tested them with that silver thing they use and I didnt feel when he touched my fingers both times…I only felt it once.
He asked me to stand up and as I held on to him, he wanted me to get on my tip toes. Nope. Didnt work. I still cant do that. BUT…I did it before and I’ll do it again. I made a mistake by switching Dr’s and now that I’m back in the right hands, I’m going to get on my tip toes again.
With the hands and only feeling him touch me once, it’s that once that I’ll hold out hope for. That one little spot that I can still feel. I think it can get better. If they can just get the IVIG right, maybe.
I dont know but I’m not letting it get me down. I have a whole lot to fight for and many reasons to be better.
I choose to be ok. That’s what my choice is. 😉
March 11, 2009 at 1:46 pm
Get a scooter at disney. You can rent them, but check about a reservation. Also, if you have a scooter, you and your party get front of the line entrance to the rides. We stayed at the Yacht and Beach club, it is walking/scooter distance to Epcotts gate. the Boardwalk is too. When we stayed at the Polynesian, I think I remember the hotel bus being a short ride. For sure check out the scooter rental, besides saving you, it could save Connor if he is tired and you could be the designated souvenir holder!!!!
Dawn Kevies mom
AnonymousMarch 11, 2009 at 11:22 pm
I have sensitivity issues as well. I was drawing a bath once and kept thinking when will the water warm up and then I noticed all the mirrors in the bathroom were fogged up. I asked my daughter is the water really hot or just warm since I couldn’t tell and she was like “mommy it’s boiling!” I’ve also cut my fingers doing the dishes (on knives) not realizing it until I see blood. Now I keep knives separate, my feet are the same I can walk on hot concrete or sand with out slippers. I’m not bragging it’s apalling to me I just can’t feel hot or cold and always feel like I have on 3 pairs of socks and gloves with some tingling pain. It’s great…not! My neurologist said this is as good as it gets and since my prognosis was I would be in a wheelchair 2 years ago I am thankful for what I have. Unfortunately I am getting weaker each year which sucks since I was hoping for the opposite. Luckily I have some great looking canes and a nice blue walker with a seat so I can rest.
And I do need my rest!
Hang in there,
AnonymousMarch 12, 2009 at 12:07 am
Thanks Joyce. You sound alot like me. I cant walk on hot cement…at least I couldnt last summer. If I walk tooooo long, barefoot…it feels like walking on broken glass. But, I know all about the not knowing about cut fingers in the kitchen and, let’s not forget the cut legs when shaving. Wow…talk about a bloody mess a time or two.
Dawn, great idea my friend ! I bet they cost a fortune…but, I’m thinkin’ I may not need a scooter each day, but, maybe every other. I’ll look into this.
Thanks much ! We do have a cutting pass already, it was part of the package.
I’m so excited to go. I dont know if I’m more worried about how I’ll get along or how my step daughter’s attitude is going to be. 😮
Oh well, it’s gonna be fun no matter what.
It’s COLD here tonite…7 degrees. BURRR. They said 70 by next Wednesday tho. I am off tomorrow and Friday b/c Connor is out of school. I’m having my ivig on Friday. He is splitting it…instead of two days in a row 80mg, he’s doing 40mg ev two weeks. I dont know WHAT is going on, if that will work.
I thought it would be 80 every two weeks. I hope I’m not back to the drawing board on this.
I’ll give it a chance and see. Tho, I’m very pessimistic.
tired…..and I’m coming down with a cold.
March 12, 2009 at 9:52 pm
In my uneducated opinion, your pessimism IS warranted. It sounds like it was 2 days in a row 80 grams (160 total) incidentally, if that is what you are saying, it could explain your rashes and reactions. 80g a day is alot. So now it sounds like 40g total every two weeks? Also, I have to do the math tommorrow, I noticed you wrote mg instead of grams (g) Now I am really confused. Write back, I will check manyana. About the scooter rental, I bet you could finagle to get it free. YOu never know unless you ask!!!
Dawn Kevies mom
AnonymousMarch 14, 2009 at 12:35 am
I wasnt well when I wrote my last note. I’m still not ! yikes.
I am getting 40 grams every two weeks and was getting 80 over two days.
He would do 40 one day, 40 the next. Now it’s 40 GRAMS every two weeks.
Two bottles .
to me, it isnt gonna work ? Am I wrong ? I WANTED to get 80g every two weeks. Not split it up.
I told the nurse, I’ll give it two months.
I have a bad cold kickin my backside right now. I got my treatment today. My nurse said she has a new patient that is only 2 yrs old. He gets ivig but they are doing it sub q. Ever heard of sub q ? I think it’s short for subqutaneous or something like that. Lots of diff needles in the belly, leg or arm and you do it yourself. She said it was just approved for CIDP. She has another lady already on board that does it herself, too. I think it’s more frequent.
I’m having a heck of a time with the pain of the iv starts. I wasnt able to feel them up until the last few times. I”m glad I can feel it. However, I cant feel my fingers…weird. And, some spots on my hand I cant feel but boy I can feel the iv’s lately. She is going to get me some numbing stuff to put on before the treatment.
tired and cranky…
I better go lay down. Randy Travis is on Leno right now….wow, he looks like I feel. 😮
AnonymousMarch 14, 2009 at 4:40 am
My nurse does sub-cutaneous Ig for several of his patients. There is a much reduced risk of reaction that way. I had it several times in the hospital accidently – they would blow a line and not fix it so I’d get the entire bag of IVIg in my arm. You get puffy as you would expect but it gets absorbed quickly so I’m assuming if it were anywhere but the bend of your elbow it wouldn’t be a big deal. He also says it’s a procedure patients can do themselves due to how easy it is and also the reduced risk of reaction. I think it takes longer but I can’t say for sure since I’ve never officially done it and my treatments take 7 hours as is. I will absolutely try this before giving up on IVIg due to side effects but so far changing my schedule to once a week has pretty much eliminated them.
As for your change in dosage – did he do that because you were having reactions or was there some miscommunication or is this just a step along the path to determining your final dosage and schedule? I know things changed many times for me before getting to this point. More IVIg less often, less IVIg more often, and various combinations of that. I now get 40g once a week for three weeks with a week off at the end and this is the best I’ve felt in 3 + years.
Don’t get too impatient – it did take 3+ years to get to this point and that’s not to say we won’t change things up again in a few more months. I’m just kind of accepting that not much is going to be predictable about this disease.
P.S. Bactine works wonders for reducing the pain of a needle stick – and it’s antiseptic too! Just swipe your arm a good ten minutes before the nurse wipes it off with alcohol – that way it will get absorbed but will not interfere with what the nurse has to do.
AnonymousMarch 16, 2009 at 8:15 am
My nurse swears by the sub-q. I’m glad to not be the only one to hear of it.
She wants me to ask the dr about it for myself.
I dont know WHAT he’s doing with my dose. I wanted to move my treatments closer together…all 80gms of it. I’m still getting the same dose in a month and I wanted to increase it.
Like I say, I’ll give it two mos and then I’m calling. I’m so tired of this. I know he knew what I meant when I said lets do it every three weeks. He said every two and I thought…sweet…maybe it will work now. Yeah, not so much.
I am still really sick with this cold…cant seem to shake it. I kind of thought with the IVIG on Friday, that would have kicked it outta there.
Now, my whole family has it. Hubby more so than Connor. He’s got the immune system of a saint. He has perfect attendence at school and doesnt want to mess it up. He had a slight fever last night but with tylenol, it went away. Poor lil guy.
Back to work after four days off…my desk is piled high and someone called in for a vacation day and I have to go do her job while she’s gone. Nobody does my work when I’m gone…it waits for me.
Job security, I hope.
good day everyone,
March 16, 2009 at 10:54 am
sorry no info
AnonymousMarch 16, 2009 at 2:14 pm
as always DAwn, thanks for all your input.
He had told me that since I’m already getting ivig, it wouldnt do any good to do a “load”. I still very strongly believe I am not going to get better with the current regimen. However, at the same time, I KNOW I must be optimistic or I’m left with no hope.
I am greatful that I’m not doing 20grams like the last dr was ordering. Crazy!
Thinking that I’ll do my next one in two weeks and then give a call and say that I dont understand…that I truly feel I need more.
And yes, I seem to be the slow progressive rather than remit/relapse. The CIDP has not burned itself out and that is what my dr says he’s going for. He says that it will eventually “burn itself out”…we just dont know when.
I’d do a load a week if he’d order it but I do have reactions…maybe that’s his issue…or maybe it’s the cost…or maybe it really wouldnt make a difference.
Until it does…I have to believe I can get better or at least not worse. My toes are completely gone…as in, I cannot move them even a tad…none of them. I remember so clearly when it was only the left foot. When did it become both ? I dont know…I DO know, I cant let this happen to my hands.
As for the sub Q…she has two other patients, adult women that use it also.
I have to wonder if it’s cheaper. I’m with you…for now…I’d like to know it’s going into the blood with no wasting.
It’s costing me my future already….I am not insurable for Long Term CAre insurance…and God only knows what else.
AnonymousMarch 18, 2009 at 1:31 am
My neuro said to me that sensory stuff is always the hardest to recover. Muscle stuff is easier.
Here’s some food for thought. I quit doing my immunosuppression drugs for two years because I couldn’t afford them. When I went back to my neuro and had an EMG and Nerve Conduction Study, he said (and the test results confirmed) that the results didn’t change much. Neuro said he would never have taken me off the immunosuppression because he wouldn’t want to take the chance, but since I did take myself off and didn’t get much worse, he said to stay off.
Bottom line, it wasn’t helping me much anymore. You never know until you try.
Maybe you will find that it isn’t the amount of the IVIG, but the frequency of it that makes the difference.
In terms of Long Care Insurance. I know that weighs heavy on your mind. I was terribly bummed out when they didn’t renew my life insurance. I switched my whole life to a term policy with some financial savings. I had two other term only plans. Nothing was renewed at the expiration of the term I was in. I lost it all, every plan was cancelled. Now I have a 10,000 policy to cover burial, but nothing is available for mortgage or the financial protection of the family. I have to live with that, but I have no choice.
Think about where you are in your CIDP and how fast it is getting worse. Take a hard look. Look at the things that affect you negatively. Look at the things that help you get better. I’ll bet things look like this
Worse 1) extra loads at work, 2) marital strife, 3) getting behind housework, 4) monetary woes, 5) uncertainty about the future. Am I close ???
Think about better: 1) a nice relaxing day with everybody 2) a smooth workweek 3.) Somebody else cleaning up after supper 4.) roses, chocolate, and a big hug when I get home. Am I close ?
If your CIDP is acting like you are describing, you will still get worse, but I think there will be light at the end of the tunnel. I hit a level spot, a lot of others have done the same. Kind of “plateau”. I still have a lot of residual problems, and you might as well, but the getting worse and worse might kind of level off. If and when it does you will still have some functionality.
There are some CIDP’ers who are bedridden, immobile, and unable to care for themselves, but they are more the exception than the rule. You will probably have some problems, but you will be able to function. You will be able to take care of your own body, and do some things around the house. Maybe you can’t till a 40 acre field, reshingle the roof, hang sheetrock and rotate your own tires, but someone can do that for you. You will be able to cook, clean and do most everything you could do before. Maybe just not as much, or for as long.
It’s not that bad. Problems yes, but you can deal with them. Not getting the long term Care stuff is just another crappy bump in the road.
By the way, if you do more of the things that help you feel better, and let others do the things that make you feel worse. You will feel better. They will not feel worse. It was very hard for me to give some things up, but it is working out.
I can’t drive a car anymore. Well not safely. I can’t feel the pedals and where my feet are. More than once, my foot slipped off a pedal, and more than once I pressed the wrong pedal. I still drive a little bit around town, but no more long trips. As a masculine man, it is pretty de-masculinizing to have to have your wife drive you around. Or to have to ask your kid if he will take you to the grocery store. I am still working on it, but I am getting over it.
Long post. But I care, and I hope things go good for you. It really seems like we are traveling the same kind of CIDP road.
AnonymousMarch 18, 2009 at 8:12 am
Thanks so much Dick. You always seem to say things that make me think…a lightbulb or two will go off and you really put things into perspective for me.
You really do help me with this.
As for being close on the better and worse, yes, you are indeed close…I do want to add that Monday was my anniversary, and I did get the roses you mention…AND…my husband almost always cleans up after dinner when I cook. I’m a pretty lucky woman, arent I ?
But, you nailed it..those things do mean and help alot !!!!
I was just thinking to myself this morning how tired I am and as I head out the door at 6a …I thought about what if I couldnt work any more and is that time coming faster than I think ? I pray not…I push myself way too much…I’ve gotta push for 12 more years ….12 more years and I can retire at 50 with 30 years of service. I’ve GOT to make it. I’ve been thru way too much at this job not to make it to my retirement. So, I have to tell myself-no way will CIDP take THAT from me ! Right ? I do pray.
And, then, when I am 50, Connor will be starting college and I can go to wherever he goes for his education and be the lunch lady so that I can watch him and make sure all the girls stay away until he graduates. Ya think ?
Ok, I can dream. A lunch lady might be a bit far fetched. 😀 We’re hoping he goes to college in a warm climate so that we can follow. At least, that’s what I hope. Arizona State would be nice. We have to get thru kindergarten first….:p
I’m going to think about what you’ve said here, today…and please know that if you were here, I’d give you a hug and tell you thank you. 😉
AnonymousMarch 18, 2009 at 10:22 am
I found this today looking for a nifty gift for my Dad… how clever! It turns the light red when the water temp is over 89. They also have one for the shower – no more testing to see if it’s hot enough! Now if they would just make one that shows it’s TOO HOT!
You must be logged in to reply to this topic.