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Raynauds Syndrome

(13 Posts)
Scoleah Wed 07-Feb-18 21:14:09

Hi,
Just wondered if anyone else out there had Raynauds Syndrome & took medication for it?

I've had it for as long as I can remember, im 28 now, and it's affecting my toes really bad these past 2 weeks, to the point where their So Sore; the skin is peeling and they feel quite swollen; it's really uncomfortable. It feels almost like their covered in Blisters

The last time I saw anyone about it I was about 11, they looked at my hands and feet and said they looked disgusting, said I could take medication but would probably give me migraines and Swollen ankles so advised I wear Socks and gloves all year round instead hmm

I'm used to my fingers and toes turning white and Numb, the throbbing and the aching, My toenails have fallen off on Past occasions too.

I don't want to waste the Doctors time, so just wondered if anyone had been prescribed anything and it worked at all?

Thanks in advance!

Scoleah Fri 09-Feb-18 10:25:39

Anyone?confused

Bettertobehealthy Fri 09-Feb-18 12:39:17

hi Scoleah ,

whilst I don't have Raynaud's , I wondered if you would be interested in this research. Found in Pubmed , that is in a medical journal i.e. Rheumatology International 2013 p 751 to p 755. The abstract is here on Pubmed: www.ncbi.nlm.nih.gov/pubmed/22580932

In a nutshell: The message from this research , is that patients with Raynaud's, who are deficient in Vit D seem to benefit with supplements. A randomised , placebo controlled trial was carried out, this is commonly thought of as Level 1 evidence. In this research, an eight week course , seemed to reduce symptoms by roughly 50%.

This research was carried out in 2011 and published in 2013. Later research , in the PLOS ( Public library of Science ) seems to confirm the proposition that endothelial cells in blood vessel respond to Vitamin D3.

If I was you , and I wanted to pursue this exciting new possible avenue , which may be of help to you, I would find out my Vit D level , if it was lower or similar to these patients, I would then supplement daily with sufficient to bring my level up. The start point for most of these patients was around 20 ng/L , which in UK lab measurements would be 50 nmol/L . ( In the UK we measure in different units. ). The end point for most of the treated patients was over 30 ng/L or 75 nmol/L in ( UK measurements )

These researchers did not use the best treatment regime , in the light or more recent knowledge , we think that small daily supplementation is better that monthly bolus doses. Vitamin D researchers now consider blood levels of over 100 up to 150 nmo/L , but preferably at the top end, i.e around 140 , to be most advantageous. If you maintain your level , at these kind of levels over long periods of time , you may very well markedly improve your problem.

I hope this has been useful , at the very least , I hope it may prompt you to look into it.

best of luck,

BTBH.

PS. You can get a Vit D test sent to you by this NHS path lab.
www.vitamindtest.org.uk/ or you can organise one through you doctor , if he is willing to do so.

PPS. I have posted quite a bit here on Mumsnet concerning Vitamin D , search my username for more info , OR get back to me if you need any more info about doses etc etc.

Scoleah Fri 09-Feb-18 21:34:09

Thank you @Bettertobehealthy smile

TripleAlphaProcess Fri 09-Feb-18 21:47:54

I have it, in winter I used to wear a thin pair of socks, some lined bed socks and ugg boots whenever I was outside. It didn’t look great but helped a lot with peeling skin on my toes etc. I also used to layer gloves. I was never prescribed medication for it. It doesn’t bother me at all since I moved to Australia, which I suppose could be down to improved vitamin D or just warmer temps.

Muffinbutton Fri 09-Feb-18 21:54:25

I've got anti-raynaulds. Still brought on by the cold, but my fingers/toes swell up when they get cold.
I was diagnosed when I was about 16. I did have beta blockers ( which didn't seem to make any fifference) for a while but now I don't take anything.
I just make sure I wear gloves, two pairs of socks, stay cosy and take any rings off before the swelling starts!

Ubercornsdiscoball Fri 09-Feb-18 21:56:42

I have it. I was once given nifedipine - reduces blood pressure by dilating the blood vessels therefore should help the symptoms - but I just couldn’t do anything once i’d taken the tablet. Made me too lightheaded so it must have dropped my blood pressure too much!

Scoleah Fri 09-Feb-18 23:41:37

Thanks all for your responses..

Yes, I normally wear Socks, and I've purchased some Uggs.
I won't bother the doc then if nothing is working!
Never had peeling painful toes like this in all the years I've had it!
I've been rubbing germolene in them & have just bought a foot warmer with massage. --My DS has hidden my wheat bag--hmm
Roll on the Summer , even though I look like I have dead mans feet then, always have a tinge of purple/blue lol.

Scoleah Fri 23-Feb-18 08:16:36

Hands yesterday shock

Sarsparella Fri 23-Feb-18 08:20:33

I have this but just in winter always wear decent gloves and thermal socks under everything and it tends to keep it under control

I’ve never thought to even speak to the doctor about it tbh, maybe I should!!

MilkTwoSugarsThanks Fri 23-Feb-18 08:21:08

Best thing I have for my hands (I don't get it in my feet so much) is furry mittens with a hand warmer popped in each one. Not massively practical I know, but if I'm just walking somewhere or waiting for a bus it's great.

Scoleah Sun 25-Feb-18 09:49:10

My mum bought Circulation socks & glovesfor me that had silver inthem to help retain heat , but they came back like them tights little girls wear at parties & didn't do anything!

That pic was after I'd drove the car for 2 mins to the Shop! (Steering wheel was cold)

God help this week when the cold snap comes back!
Roll on summer --when I'm only dark purple & not white/blue--grin

LivingInMidnight Sun 25-Feb-18 16:09:09

I was offered medication but the side effects sounded worse than the raynauds. Someone where I work is prescribed viagra for it but it's not stopping tissue death (she's not very careful about keeping warm though).

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