About 50% of my work is out doors as I'm an engineer. 6 weeks ago I was diagnosed with Raynauds. My Mum has it, we didn't realise it was hereditary. I've seen a doctor twice, each time she has just given me a computer print out, nothing else. As the weather has now turned cold I'm really struggling with all site work. I can't hold a pencil to write up my notes and the pain when the blood returns to my fingers and toes is awful. I can't just get a desk job nor can I find a job with equivalent pay in the current climate.
Does anyone have any advice? When I told my Doctor I couldn't do my job she just said ahhh.
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Nat1
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Doctors cannot tell you how to keep warm outdoors. Have you tried taking precautions against the cold? Do you wear several layers of clothing?
Do you have a windprood coat? What sort of socks and gloves do you wear? Have contacted the Raynaud's and Scleroderma Association (RSA)? There is much you can do. Some people with Raynaud's go skiing. Don't give up your job without having inverstigated all ways of keeping warm outdoors.
Hi, I'm a paid up member of the RSA (£12 a year) found it absolutely invaluable. This months newsletter is going to be asking for volunteers to test heated gloves. I went to the Seminar about it and met the company that are looking for the volunteers.
I agree with Zenabb. I wear silver threaded socks and mountain socks and heat packs (altogether) and my feet NEVER warm up and that's indoors so you can imagine when I go outside
Remember if you give up your job you will have to fight to get ESA (Employment Support Allowance).
Get your doctor to refer you to a Rheumatologist, they can provide medication, advice and some solutions to assist you.
Thanks for your advice both. I've been working on sites for the past seven years and this time of year wear two pairs of socks, thermal, a couple of t-shirts, a jacket and a hi vis jacket. I'm not supposed to wear hats beneath a hard hat. and gloves are awkward. I wear gloves beneath vinal gloves. Trouble is I'm pretty much standing still all day and regardless of how many layers you wear the cold gets in. I don't expect the doctors to tell me how to keep warm :). But if I can't write I can't do my job. I'll look into getting silver socks/gloves and heat packs. Thought I'd try vitamins and evening primrose oil too. Though it'd be worth a shot.
Hi Nat1, Apart from the medication that I take for Raynauds, I also wear the silver gloves with a pair of fingerless gloves over the top so I can put my heat packs in between. This would also allow you to still use a pen but keep your hands warm at the same time. I have also been taking Ginger Root capsules (Holland & Barrett) which are not only good for circulation but are also good for the joints (information gleaned from Internet research). Have been taking these for a couple of months now and have noticed a difference. Agree with Zenabb, don't give up your job until you have exhausted all other avenues first. Good luck
You can get from the RSA Mycoal packs that last 8 hours. You can slip them inside your gloves and they keep your hands warm and you can write. They have some for the feet as well but they don't suit me. Also see a rheumatologist and get treated. Good luck.
heat pads in beween 2 pairs of gloves and in your boots .Watch the suppements as one does not go with Methorexate .A spare moment run on spot .Heated jacket heated gloves Sheep skin .See an rhumatlogist
I was given a pair of heated gloves which require a battery connection. This is almost impossible to do with "dead" fingers!! Any advice on that one?
I actually prefer mittens with my fingers to keep each other warm. I have knitted a number of pairs of the mittens from the RSA pattern. These with a heat pad inside are a big help. Also wrist bands with a heat pad inside.
Nat, I'm sorry you are going through this. It's really difficult to work in the cold. I have always had poor circulation but was only diagnosed 3 years ago when it got bad. I work most of my year in a freezer. It's been a struggle, I don't want to complain because I have so many stupid issues, I pick my battles. I have learned to deal with it but it can be very painful and it's difficult to concentrate. I have learned to cope through wearing the right gear, dressing loose & layered. I take herbals such as Ginko Biloba & omega-3's & drink tea constantly, it helps to keep warm but I choose them carefully. Research teas such as Oolong, ginsing, Pu erh, white, Hawthorne, bilberry... I choose herbals & teas that increase blood flow & dialate blood vessels. Speak to a herbalist/naturopath for suggestions. I find it to be a significant help in reducing the worst days. I hope this helps.
plenty of layers, thermals (mountain warehouse, M&S), gloves you get thinsulate ones with fleece inside them, scarf, hat, may need medication, have a read of the RSA a website is a must. when i was first diagnosed i was told i had raynauds and that was it. hope it helps. Don't give up yet.
I can't imagine having to work outside with this condition. I do go skiing but have heated boots, silver socks under ski socks, some very expensive gloves that do keep my hands warm and loads of layers but if you are having to write you can't really wear thick gloves. You should talk to your doctors about writing a letter about you condition and then talk to your employer about what they can do to help (with regards being able being to wear hat under hard hat etc), also is there a device that you could speak into rather than having to write (must be with today's technology). I beleive your employers would be legally bound to help if they can (but don't quote me on this). With regards medication, I take nifedipine in winter (you need to try different doses until you find one that works for you). I tried different herbal remedies but to be honest didn't find they helped that much and even my rhumatologist didn't seem to think they would make much difference. I also use the mycol hand and feet warmers. Once you shake these out they last ages (found these were good for my hands but probably not as effective for my feet).
Hi I put on some foil wraps around my fingers which I have made myself and wear them under gloves, it seems to delay the onset. I sent some to a few people last year and it seemed to help the people with primary reynauds, and in particular myself and another guy who have to work outside a bit (he was a solar panel installer and I an a scientist doing environmental experiments - so need to be able to use a screwdriver, fingers etc.) . If you send me a message if you would like me to send some to you to try. I have written a short doc to go with them. I had hoped to get a Mk II design done by now but 3 kids and working have meant no time... still there may be opportunity over christmas! best wishes Christine
Thanks all for your advice. I think I'll try the fingerless gloves but with heat pads but under the plastic gloves I need to wear. Going to try taking vitamin suplements and perhaps ginger or ginko.
One other thing, my gp seemed to think I have primary Raynauds because my mum has it. But my mum was concerned that it may be secondary as I'm in my 30's and it's come on very suddenly. My hands are quite sore most of the time - quite stiff. I've also noticed a few difficulties when eating as in trouble swallowing food such as bread.
Incidently my mum was never diagnosed with primary or secondary. She has arthritis and very dry tough skin and also had colitis.
Does primamry Raynauds happen in your 30's? Everything I've read says it happens pre 30?
You may have limited scleroderma. I was diagnosed about 6 yrs ago. It started out with bad Raynauds , itchy skin and now I struggle with eating certain foods especially dry food like bread. Dry food gets stuck in my throat and then I get hiccups as well as pain. I hope that you don’t have limited scleroderma but thought you might appreciate knowing that others deal with what you’re going through. I got on this sight because of my Raynauds and I am trying to figure out how to deal with it too. I hope things get better for you.
Also, just to let you know if they say they can’t find anything don’t give up because the rheumatologist that I went to had a hard time diagnosing me. Johns Hopkins was able to figure out what I had.
I use a pair of neoprene gloves -they come with the fingertips off but most of the fingers covered. These are worn under larger gloves and keep the temperature in your fingers pretty well. I also have a heated gilet/waistcoat and heated gloves, easy to research on the Net. Once you have specialist advice - Rheumy - your employer is bound by their duty of care to make 'suitable adjustments' to your working environment to take into account any long-term condition, i.e. Raynauds, such as allowing a hat under your hard hat etc.etc. Remember that each time your fingers go into spasm I believe you are harming the capillaries/nerve endings so its always best to look after them as much as you can. Your job is very important but your health more so!
I understand how you feel Nat1. I was a designer a year ago and since then I am unable to use a pen very well due to the pain. Doctors do not always understand about Raynauds. You should carry on with your job as long as your body permits you to, as I am out of work now, which makes things even harder, maybe you could use heated aids for your hands whilst outside and lots of hot drinks. Ginger, chilli and cayenne pepper is also great in your meals. Good luck I hope this helps a little.
You need to see a Rheumatologist but in the meantime ask your GP if you can be given some medication to improve your blood circulation. It must be very difficult for you to do your work, and of course, as an engineer, you won't be able to wear gloves to carry out tasks.
Maybe you could try a good pair of fingerless when you're doing some things. It's got to be better than nothing for now but you must go back to your GP and get all the help you need to manage this. Keep sharing your difficulties with us and keep looking for tips on this site. It's a great place. I've only just discoverd the RSA and it's good to learn I'm not alone. Hope you feel better very soon.
Little Hotties, Hot Rocks, MyCoal... there are various hand warmers about. They do stay reasonably warm and I do recommend them. They can help, they're not perfect. The RSA sell them though you can buy them in bulk packs of 40 which reduces the cost somewhat.
While I appreciate you won't always be able to wear gloves, the RSA do sell 'silver' finger less gloves for Raynaud's sufferers. I actually find these keep my my fingers warmer than the whole gloves. Irony right there.
Please ask your GP to refer you to a Rheumatologist. You can ask all the questions and get professional answers and more information about you condition. GP's are not experts in any specific area but some do seem reluctant to refer their patients to the experts. My GP had been guessing about my conplaints for many years and it was not until, while he was on leave, a Locum sent me off to the Rheumatologist where I got the correct diagnosis and treatment. I now have a GP who liases with my Rheumatologist when necessary. My condition is now stable and manageable.
Talk with your GP about supplements before you buy. Some may be available on prescription if your doctor thinks you need them, also some may not agree with your present prescribed medication. Any chance that your boss could find you a position indoors? Best wishes.
Nat, what did you decide to do about your job and working outdoors in the end? I am in a similar situation. I hope you have found a solution that works for you. Thanks.
I'm still working outdoors for half of my time at work. I layer up and put hand warmers in my gloves and wellies! Doctor has given me tablets but I've not found this winter as cold as last so I've put off using them. Am looking at an alternative career though. Just takes planning.
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