This is summer??: Is it me or the... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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This is summer??

bealepup profile image
12 Replies

Is it me or the weather? This is supposed to be summer! Today 15 degrees and raining all day, making me feel really fed up. Had Raynauds attacks 3 times today one lasting 2 hours, this in spite of having Iloprost last week and being on Sildenafil as well, dreading winter again! I'm going for esophageal manometry and ph readings end of week so off Lansoprazole which is not helping either, sorry I just had to get this off my chest, family and friends don't understand how I feel. I'm normally quite positive but not today😕

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bealepup profile image
bealepup
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12 Replies
ilovedancing profile image
ilovedancing

I had a raynauds attack in my fingers when I got in the car to go to work a few days ago. It is the first one I have had since winter. I wasn't to bad last year since I started taking nefedipine, no attacks in fingers, just my feet but now it seems it is back in my fingers so I am worried as to what the winter will do. I think it was the cold steering wheel tht set it off the other morning. I didn't think to war gloves in August.

p-c-1940 profile image
p-c-1940

I dislike the weather here also. Terrible day today. The neighbor man who ruined my Nasturtiums left a box of four plants, not the right kind of Nasturtiums - and I want to throw them at him. I planted them instead but I still want to toss them on his porch or right at him, dirt and all! This is supposed to be 'monsoon season' and we've maybe had one monsoon. It is very hot out. My Raynaud's is acting up also. I need to see about three different doctors right now. I forgot podiatrist appt. this morning and could not even call them. Tomorrow I probably will start making phone calls and appts. I am just not functioning right at all.

minnime63 profile image
minnime63

Can anyone advise on Raynauds please? I was dx because of my hands. Yesterday my leg and foot felt frozen (not particularlyt o the touch, more internal) and solid for a couple of hours. Really weird feeling. Does that sound like it?

grannyannie profile image
grannyannie in reply tominnime63

Not sure if that is Raynauds. I have the same horrible feeling in both legs, worse when in bed especially if I lie on my back. Haven't had it diagnosed so can't put a name to it. Not a lot of help I know, apart from the fact your not alone, perhaps someone else will be able to clarify it for you.

minnime63 profile image
minnime63 in reply togrannyannie

Thanks! My foot is actually blue this afternoon and the temp is in the 20s!

Zara-LouiseD profile image
Zara-LouiseD in reply tominnime63

That could be nerve related. When I had a ruptured disc in my lower back, my lower leg and foot felt cold and heavy - almost like I had a concrete boot on when it eventually ruptured big style!

minnime63 profile image
minnime63 in reply toZara-LouiseD

Thanks, I think you may be right! I know I have spinal spondylosis so maybe something was touching a nerve. Thanks for responding!

zenabb profile image
zenabb

I have got used to doing what is needed summer or winter. I wear gloves if I need them (silver thread ones from the RSA) and people have got used to me wearing them. What is the use of getting angry. It's no-one's fault.

bealepup profile image
bealepup in reply tozenabb

Been wearing gloves but don't help much even the silver ones. I'm not angry just fed up

zenabb profile image
zenabb in reply tobealepup

That I understand.

What you have described has been our typical summer weather this year in Northern Ireland. I've had two brief respite when I escaped to the south of England. Bliss!

I've had my gloves on too already! I think it is worse when the seasons are changing. I find fluctuating temperatures harder to deal with than a constant 15 degrees - maybe that is why your Raynauds is so bad at the minute.

I also get it in my feet and ankles I'm.Just choosy about my footwear. I take diltiazem which helps. I didn't realise how much it helps until I decided to stop it briefly with it being 'summer' and everything. Sometimes I don lycra and go for a plod around the block. My feet are usually numb for the first 1st 15 or so minutes. Not a nice feeling!

Anyway, after this year's disaster of a summer I am taking no chances next year and am going to book a fortnight in the sun which presents other challenges with a Lupus overlap but I'll cope!

I hope you're feeling better. It's lashing down here today after yesterday's glorious weather (really!) Good luck with your tests at the end of the week.

boome profile image
boome in reply to

I live in Greece, so I don't have raynaud attacks in the summer, although with cold sea my fingers go blue. But... Don't be jealous of me because I costantly try to escape the burning sun! Not to mention the heat. It makes it hard for me to breath and generally I feel so weak I can barely walk, so this goes to prove you can never be happy with what you have! :))

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