Hi All, I Have CBD, my skin is getting v... - PSP Association

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Hi All, I Have CBD, my skin is getting very sensitive, it hurts when blood tests are taken. Does anybody have the same symptom?

tisha1953 profile image
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I have to have blood test taken every month for warfarin check. Today it was really painfull, she had to try both arms as she could'nt find a vein. Usually it doesnt hurt but today my skin was very sensitive and really hurt, is this normal progression? Also my skin gets itchy when hot, especially my neck. I'm a bit worried about progression of pain, i don't like it and a bit of a coward :( I think i am getting paranoid and looking for symptoms !!! I need to kick myself up the bum and start living life to the full, when i get the energy lol :) Love and hope to all and have a Happy Easter, don't eat too many eggs lol xxxx

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tisha1953
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mummybear profile image
mummybear

Hi Tisha, sorry to hear your having such a bad time, try using a neck ring that you can freeze for that hot neck, you can buy them from camping shops or maybe the internet. I am not sure what the warfarin is for unless you have an added condition. Try eating some protein and watch a comedy to boast your energy and make you feel good. Thinking of you stay strong, enjoy the Easter season.:)

I think that you will find it is the warfarin that is mostly triggering the sweats and itching. As it is life preserving and prevents you getting clots it's not something you can just stop. But it's worth telling your GP as with most medications there are alternative brands and it may be you can change to one that does not give you these symptoms. It may also be that the dose may need monitoring due to the fluctuations of your CBD. Meanwhile there are sweat wicking pillowcases which are a little pricey but if they give relief are well worth the money and will relieve the itching due to heat. I have ordered them for my menopausal sweats in the same area. Mum had PSP and not sure if it is the same for CBD but her issues were a mainly LACK of sensation although she did get terrible itching at the nape of her neck when she had sweats. Her sweats were mainly combined with infection where she would overheat. I hope you get some relief- I can sympathise as it disturbs sleep and is not pleasant. You have enough issues without all this!

Diannex

denmob profile image
denmob

Rivaoxiban is a drug used to thin the blood in the same way as warfarin. It is a newish drug that seems to have fewer/no side effects. My husband is on it and because it is a tiny tablet once a day is easy to swallow. Perhaps you might discuss with your dr. Good luck.

tisha1953 profile image
tisha1953

Thanks guys for your comments, didn't think of side affects, will see GP next week and ask her for advice, have taken antihistermin tablets, they seem to help. Also a cold flannel works wonders. It just embarrassing when your in a restaurant or pub and your neck and face is bright red and blotchy :( Last week i went to the toilet and used toilet paper with cold water and put it on my neck, it was lovely, when i looked in the mirror, to my horror the paper had disintegrated with the water and was all over my neck and face and in my hair, it took me ages to get it all off, it stuck like glue. Good job i looked in the mirror before going back out, my husband wondered what had happened to me lol, the moral of this story is to take a flannel with you to use in a plastic bag, lesson learned !! Love to all xx

SharonAB profile image
SharonAB

My husband has had PSP for a number of years and has extreme changes in body temperature. Some has been put down to medication side effects and some I presume to be part of the disease for I read somewhere that neurological conditions like PSP and CBD affect the themoregulatory control of the body. So the best I can suggest is always have on hand a flannel, small plastic bag, bottle of water & plastic cup. John (or I) tend to take a 'kit' everywhere. For John at home - frequent rinse showers have helped, along with electric fans and airconditioners are on most of the time (Yes, we do have an extremely high electricity bill). N.B. I did have a smile on my face when I read about the toilet paper because I've done the same thing to myself after eating at an restaurant (and I am the one who is meant to be in good health) so rest assured you just had a 'perfectly normal moment') Well I hope for my sake!

Regards, Alana - Perth Western Australia

Hi Tisha

Sensitive and itchy skin is something I've been experiencing for the past year or more now. Not really broached the subject with consultant, although she did say that my body won't cope very well with extremes of temperature as it has problems regulating itself, but my guess is that my problem is morethan likely due to bad circulation which leaves my skin very dry and itchy. I don't often get a sweat on but when I do I can't help scratching and end up with a real rash, mainly on the legs and upper arms. Best remedy is I moisturise as often as I can the places I can get to and let my wife do the other bits, them bits being the ankles.

My feet are sometimes so sensitive, mainly my let, that I can't bear to even have the duvet laying on it and have to hang it/them out of the bed.

Hope you find some relief, take care and Happy Easter to you.

Dave xx

ps: I felt fine after the snow digging thanks for asking

pps: already eaten my one chocolate egg

tisha1953 profile image
tisha1953 in reply to

MUST BE NICE TO HAVE SOMEONE TO CREAM YOUR ANKLES AND FEET FOR YOU! YOU SHOULD GET YOUR WIFE TO CREAM THE REST OF YOU, IT MIGHT BE FUN?!!!!!! I HAVE TRIED CREAMING MY NECK, IT COOLS IT DOWN FOR A WHILE. WE ARE THINKING OF GOING ABROAD FOR HOLIDAY BUT WORRIED ABOUT THE HEAT, I LOVE SITTING IN THE SUN AND GETTING A GOOD TAN, I FEEL SO MUCH BETTER IN THE SUN, THAT WAS BEFORE I GOT WORSE WITH THIS STUPID DISEASE, NOT SURE HOW IT WILL EFFECT ME NOW? MAY HAVE TO JUST TAKE A CHANCE BEFORE IT'S TOO LATE.

YOUR LUCKY YOU HAD AN EGG, I HAVE JUST EATEN A CREAM EGG BUT IT'S NOT THE SAME, WILL GET A PROPER ONE AFTER EASTER WHEN THEY ARE HALF PRICE HE HE! TAKE CARE DAVE XX

in reply to tisha1953

Hi Tisha

I think feet and ankles is the most I'll get, Mrs H says I'm capable enough of doing the rest of my body myself. I love the sun but not over fussed with a suntan, I guess like the majority of men my age. We are thinking of doing a last big holiday whilst I'm still able, always wanted to go to Nashville and New Orleans, currently weighing up the 'can my body take the strain/can my bank account take the strain' but if we don't do it this year we probably won't do it ever. The decisions this disease forces you into are sometimes unfair to say the least.

I not only had an egg but I had a tub of cadburys cream egg ice cream as well. Decadent or what?

Enjoy the egg when you get it, take care

Dave xx

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