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Scleroderma & Raynaud's UK (SRUK)

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Has any one else or does anyone else suffer badly swollen legs feet and ankle a lot.

tinaparkii profile image
11 Replies
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tinaparkii
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11 Replies
Nanuuk profile image
Nanuuk

Unfortunately yes. So much so I am selfconcious and only wear a dress/ skirt if it completely covers me & sweeps the floor. As I am 39 (dont drink, dont smoke, dont eat meat or anything containing dairy.) my gp deems me far too young to be having water tablets so I end up immobile & gaining even more weight as I wake with swolen feet & ankles then my legs join the party by lunch.

My left is much worse than my right -the skin on my left leg breaks in 3-4 places bt only 1 on the right. If I elevate my legs/swim it goes down but as soon as I lower them/leave the water they swell right back up again!!!

Does anybody have any suggestions how to stop it happening??

Its SO PAINFUL.

tinaparkii profile image
tinaparkii in reply toNanuuk

Well I am 43. And take 2 lots every day of water tablets furosemide 20mg and spironolactone 25mg as I have heart failure so I get fluid build up on my lungs. But I still get the fluid on my legs. I have big legs any way so when I swell up o look horrendous. Bein only 5ft 2ins as well. Do ur go proper numb as well then sore when they R going down after rest. Mine R terrible

zenabb profile image
zenabb in reply toNanuuk

Don't accept what your GP said insist on being treated.

tinaparkii profile image
tinaparkii in reply tozenabb

I would defo ask about going to see ur rheumi. As U shouldn't be refused when U have fluid build up. My g.p told me the nifedipene can cause fluid so surely U can't be refused

AHM42 profile image
AHM42

This is quite common but certain medications e g spironolactone has sorted mine out. Talk to your GP.

AHM

tinaparkii profile image
tinaparkii in reply toAHM42

It maybe be because iv been taking them for many years then that its not clearing mine. Might need a higher dose I will inquire about it. With me taking 2 different types of duretics every morning would have thought they'd clear the fluid or even have kept it from occurring. But I will definatly see my gp this week thanks

plum3010 profile image
plum3010

Yes I do due to Raynaud'a and I also have Muscular Dystrophy the best way I sort it is relax on the bed and take the weight off my legs for an hour or so

uknlv profile image
uknlv

I have this as well, I sleep with my feet slightly elevated every night and this seems to keep it at a minimum. Mine tend to swell the worst in the evening, some nights worse than others. So if it is to bad I go lie down and elevate my feet and watch a bit of telly in bed!

tinaparkii profile image
tinaparkii

I do go rest them up slightly but they tend to get worse the next mornin on wakin up.

Kuhu profile image
Kuhu

I used to have this problem - yes, used to have!! I saw an advert for a circulation booster. I asked advice from a number of medical friends and decide to give it a try. It was quite expensive, but I got VAT off because of Raynauds. I used it twice a day for 30mins and my problem disappeared!!

Now I use it once a day (most days!!) and continue to sleep with my feet slightly raised (just a cushion under the mattress).

I reckon it was money well spent!!

It may not suit you -this is just my genuine personal experience.

tinaparkii profile image
tinaparkii in reply toKuhu

Sorry just seen ur reply Kuhu. What was the booster I can enquire and give it a go I'm sure. Hopefully it will work for me. I'm willing to try what I can thanks

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