So Glad I Found You

Hi everyone,

This is the first time I've 'met' anyone else who has Raynaud's and I'm so relieved after reading some of your posts. I got diagnosed 3 years ago and it was manageable until winter 10/11 and boy oh boy, I've never cried so much with pain. I have to walk home from work most days and in the winter it's just unbearable for both my feet and hands. It also doesn't help that I've got 2 dogs that I have to walk which is a great pleasure in the summer and a chore in the winter and to add insult to injury they're snow dogs (a husky and a mally!) I'm looking forward to sharing some experiences with you all and learning more about you all and this wretched condition.

10 Replies

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  • Hi Elvenlady - I was diagnosed with RP when I was 17 I am now 55 and in 1992 I was diagnosed with Systemic Scleroderma... I also have a few other auto immune conditions which dont help. Fortunately for me my company retired me on ill health grounds in 2006/7... also have two dogs and my husband has a horse that I ride so I spend a lot of time outside. I tried Nifedipine but had bad side effects, since then I have tried numerous different drugs but they only help - nothing stops it.... I have Iloprost every 6 months which I finf is very good but I still get Ulcers and numb painful fingers that are mostly blue all the time.... I have invested in some electric gloves which cost me a fortune but well worth it for me as I can ride in them and they are like an electric blanket rounf my hand and fingers. They only last for about 4 hours but that is long enough. You must keep your core warm so Thermal vests etc and plenty of layers. I get my Thermals from Primark my angora, cashmere warm socks from TK max - other warm gloves from TK Max mainly sheepskin all reasonably priced ... Hand warmers etc fom RSA. There are loads of things on the market and the RSA have a lot to buy on their webside and research on the internet. Hope this helps

    xxxx

  • Hi Anteater, I have recently bought the thermals from Primark, which I wear when I go to watch the football. The electric gloves sound interesting, that would be good for when I go to the football. Where did you buy them from? I am going into town this Sunday, don't normally go in TK Maxx, but will pop in for cashmere socks.

  • Hi Jane, The electric gloves I have were used for light aircraft pilots and motor cylist. I mainly bought them because I ride and they were suitable for horse riding as the leather was very soft and supple had them a few years now and cant remember where I got them, but was somewhere off the internaet. However, as Yorky mentioned EXO do a lot of heated clothing and gloves and although their products are expensive for us they are worth their weight in gold. I will definately be buying a heated jacket in the future which will come in handy for riding. Good luck xxx

  • Hi Anteater,

    Thanks for all the info. I've tried various types of gloves, I've started to wear layers when I'm out walking and that keeps my core warmed up (I should get paid from Berghaus the amount of advertising that I do for them lol). I've also started researching on the internet (which is how I found the purple/black very painful lumps on my toes were chilblains) I'd never heard of them before that. I started a course of viagara last night, Rheumatologist wants to see if it helps before having to resort to iloprost infusion.

    It is nice to have found this website though, as it sometimes seems to be a very isolated condition.

    Thanks for your help

    xxx

  • Hi again, I had viagara for 6 weeks which helped clear an ulcer that I had for 6 months - it just would not go. I have also had Botox in my fingers but my fingers still go blue and painful. The index finger on my right hand is the worse, I keep getting Ulcers on the tip and after the last one I also lost some of the bone from the tip so now it is a bit shorter than my other index finger. I get all my fleece tops and ski jackets from TK MAXX. They will have a wonderful selection now at a 1/4 of the price you will pay in say Blacks.... Anyway, good luck with the Viagara xx

  • Welcome to the ste Elvenlady, I have Raynauds and Scleroderma and I have found the silver socks and gloves from here to be great. You can layer them under other ones as they are thin but do reflect a lot of warmth back into your hands. I also use the hot rock from the main sute as well and it is great as it is rechargeable and lasts a good amount of time. I like the fingerless ones as my first layer then put on thos mittens that fold back to let you use your fingers, I find the combo of those works mot of the time. Looking forward to seeing more posts!

  • hiya, i have raynauds which i was diagnosed with a few years ago, which i have in my hands and my feet, air conditioning - i find can be literally and metaphorically be a pain. the RSA website, i have found can be helpful website. Putting your clothes in the airing cupboard, so your clothes are warm the next day.

  • I agree with the others about keeping your core warm and your head.I also love the hotrox for keeping the hands warm. The saviour of my feet over the past 2 winters has been the heated insoles from AXO- expensive, but they do give a generous discount to RSA members

  • I agree, my consultant always tells me 'keep the core warm'. I always make sure I have lots of layers, and always wear a hat when I go out. The heated insoles sound good. Where did you get them from? My husband recently bought me some cosy bootie slippers, they are so comfortable. I find that keeping my feet warm seems to keep the rest of me warm.

  • I also have heated slippers, I presume that you mean the ones with the insoles which go into the microwave. Heated insoles - sorry I should have said EXO (not AXO). There is a link to the company from the RSA products page, at the very bottom. Don't be put off by the web site, apparently they were developed for Canadian police motorcyclists. I clip the battery packs to the top of my boots, but there is a strap supplied which you can fasten under your knee if wearing shoes. The batteries are rechargeable, come with charger, and last for about 5 hours. They have an on/off switch in case your feet get too hot!. Without them I would have been housebound last winter. You may need a half size larger shoe, but the insoles aren't particulalry bulky. Don't forget your RSA discount if you do order them I phoned up the company, because I had a couple of questions and the chap I spoke was most helpful.

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