My form of cerebral vasculitis is very similar to multiple sclerosis in day to day symptoms. And along with that I have a very similar pattern to MS people in that my neurological symptoms worsen in the warmer weather. When it's warmer, as in the summer or as in the current unseasonably hot spell, I'm much weaker, and also have more trouble controlling my arms and legs, tend to get more confused, and my bladder incontinence can worsen.
Do any fellow vasculitis people experience this, especially those with neurological involvement?
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vivdunstan
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Hi Viv, Jo here ....yes heat makes my condition worse. I get more confused ,and also find i have increased and more frequent muscle weakness. In my recent CNSV flare alot of last summer was spent in hospital they put fans permanently around me because the heat was making me worse. I guess the heat dilates vessels and contributes to inflammation, my theory.Pre- Cnsv days i loved hot weather the hotter the better. i just cannot manage at all now.
Thanks Jo for the reply. I appreciate hearing your similar experiences. Tonight has been very difficult for me, and the next few days will probably be tough too. I was visiting my Mum this afternoon, and although I was doing good as we left home, by the time I arrived, after an hour journey in the heat, I could barely move my legs. Just getting out of the car was a struggle, even with the walking stick I use permanently, and my husband to help. And by the time we got home things had deteriorated even more, and it took me an eternity to get out of the car into home. I spent most of this evening in bed, resting, listening to podcasts, not up for anything else. When I did get up, just to sit on the sofa, I was almost in tears with how I was feeling, extremely confused, and struggling so much to control my arms and my legs. And my incontinence got dramatically worse. And headaches started again.
Of course other people are really pleased about the warm weather, and say things like "Glorious day!", and there's not much you can say to that but nod, and move on, unless it's a close friend or relative and then I tell them exactly what I think of it! I've just ordered another Kooltie (hubby says I'll now have 3 in the house!) to help cool me down. They help people with MS, and I've also found they help me. Sausage-like tie things you cool in cold water, with or without ice, then wring out, and drape around your neck.
I have HUVs and it is not only heat sensitive but photosensitive so i'm not allowed in the sun at all and have to wear factor 50 in the rain.....
once I sat in my consultants hot sunny office and came out with a rash and burst blood vessels in my eye....... He now checks my sunglasses and hat sizes :0)
Love the sun but only go out after 6 in the summer.....
Hi I have Cerebral Vasculitis and yes definitely agree, I used to be a sun lover but now cant cope with it and feel much weaker and often get quite dizzy if I have to be out in the sun now. Not sure if more confused as seem to be most of the time now!!
I think the Alps Jo sounds idyllic, lottery permitting of course!
Difficult thing is having 2 children, fortunately not very young, you still have to get on and do everything somehow?? Often impossible but needs must?
Hi Sarah , yes two children and on my own, my boys were 11 & 13 when i first became ill. Now young adults , they help out where they can but i still insist in trying to do as much as i can, when i can. Guess it's my stubborness that has helped me to stay strong. Re the heat .... one of the difficulties is that because CNSV cannot be seen , it is very difficult for onlookers, work collegues etc to appreciate how something as simply as warm weather can be so debilatating. Also these are elements of the condition that often even medics do not comprehend. I am not wishing these symptoms on fellow CNSV sufferers but how refreshing to learn from each other and realise we are not the only one feeling this way.
i have only joined today and dont feel so isolated already. i was diagnosed in 2006 and have constantly tried to return to work as a social worker. i was full time then tried part time but could not manage it . i was retired on ill health and eighteen months on the medical doctors for my pension seem not to understand any thing about CNVS thinking it will disappearin the next year. heat affects me terribly leaving me feeling useless
Thanks for more replies. Much appreciated, both from fellow cerebral vasculitis people, and those with other forms of the disease. I have to avoid sun now as well, due to the chemo cocktail I'm on and the high risk of skin cancer as a result. Lots of my pills say I must avoid direct sun, and I don't really like coating myself in thick sun tan lotion!
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