Art student and struggling with controlling my raynaud's

I have been suffering with Raynauds since I was about 12 and I am 21 now. I was diagnosed when I was 15 but never told much about it and I have never had a good rapport with my doctors for understanding the condition or giving any information about it. Its now getting to a point where I get attacks alll the time now its cold and as I am an art university student, I am under a lot of pressure to create work, this involves putting my hands under stress pretty much 24/7.

I am currently finding it very hard to create work as my hands are my tools and they are flaring up all the time, I suffered from 14-16 with multiple chillblains on my fingers and toes which has left my little fingers crooked as I was unable to bend my fingers properly. Fortunately I have been lucky for this stopped when I put on weight and perhaps somethign to do with hormonal changes. But since September this year, my raynauds has been increasingly harder to control and I feel its taking it out on my body when I am asleep as finding I am very stiff in the morning, my joints crack and I wonder if this is to do with I am tensing my muscles to retain heat?

I havent ever found anyone who understands raynauds, I havent really spoken out about it so I hope by me joining the RSA site will give me an opputunity to communicate with others who suffer and also to stop me feeling like I am so alone in this. I recently had blood tests to check my inflammatory levels as I have begun over the last year to have increasing 'pain', only describe it as dull aches that radiate through the joints. These have come back negative and I was relieved but now its like where do i go from here, I havent told my tutors about my condition and suffer in silence with true British spirit, I grit my teeth and get on with it but now feel its my time to step out the shadows, fed up with getting on with it, its not working, I had a 10 hour attack today, watched my hands go from their most normal colour to bluish mauves with tints of orange like fish skin then like normal when i get attack, my hands are freezing but clammy and I was in a 4 hour critique of work produced in my printmaking class and I wanted to cry. It was so uncomfortable, I was trying to relieve the pressure by raising my hands a bit to let the blood drop but like an egg timer, the colour flows back to an angry red, fingers feel swollen and burn, that horrible burning sensation that makes me want to stick my hands in cold water, the idea ironic as that starts process again.

So I have tried ginkgo biloba but it didnt do anything and I felt I was just popping pills so next step for me is trying ginger treatment again..cant stand the taste but if it works it works, going home for christmas and looking forward to trying a black pepper massage :) Any feedback appreciated, just needed to voice:)

12 Replies

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  • I'm sorry to read of your struggles. Have you been back to your GP about your symptoms? If not I would suggest that you do and ask your GP fofr a referral to a rheumatologist, who will have more experience and wil be able to treat you.

  • You seem to have truggled stoically for a long time. That is no good to you. You don't seem to be under a rheumatologist or be on any medication. That is not necessary. I suggest that you get referred to a rheumatologist as soon as possible, ask your GP to put you on nifedipine, the drug for Raynaud's before going for alternative medicine unless you cannot stand Nifedipine. Your Rheumatologist would probably suggest you have treatments of Iloprost. They dilate the blood vessels by a slow infusion into your vein for aprox 6 hours over a few days (so not during exams). When you say you had a blood test, what was it? Who diagnosed you with Raynaud's? Did they do the test or your GP.

    Now how to live with Raynaud's:

    1. Keep your body very warm by wearing layers of clothes, they can be fashionable as long as they keep you warm, the reason being that if you are cold the blood rushes AWAY from your extremities (hands, feet, ears, head) to keep your essential organs functioning, mainly your heart. Any healing of your extremities becomes difficult wtih so little blood.

    2. Wear a hat for your head.

    3. The RSA sell gloves with a silver thread. They are cheap and washable (buy a few if you can) as they are thin you can keep them on whilst doing most of your art.

    4. Wear warm socks that are not tight so as not to limit the flow of your blood.

    5. The RSA sell Mycoal bags. In contact with the air they can keep you warm for 8 hours. You can slip then in your gloves if possible.

    6. Tell your tutor but take precautions. Particularly if you have to work outside

    That is enough for now, but if you give particular instances for help, let me know.

  • Just a note to say that "zenabb" has the best advice!! Try to keep those hands warm, and your entire body. And see a good rheumatologist. Keep us posted on how you do!

  • it sounds like you definately need expert advice - Take Zenabb's advice and get refered to a Rheumy as soon as possible. Keep us updated on your progress .. most of all don't suffer in silence and make sure you tell your tutor .... you are not alone ...

  • Good on you for sharing on here, it's definitely a good start! Please tell your tutor and maybe your friends, they may not completely get it but might be able to help a little or at least try to understand - I know how hard it is to live with Raynauds, the flat I'm sharing is freezing today and I've had freezing hands and feet all day, am even debating getting a hot water bottle out - it's definitely a challenge especially as the weather's getting colder.

    Speak to your gp, you may feel like you're just moaning or dont even deserve their time but you definitely need to speak to someone who can help, there are many drugs out there that could help.... x

  • So, sorry to hear about your struggles. I too have had raynauds for a few years, and you are so right. No one, unless they have it seem to understand. I would love to hear more about the silver gloves, and if you can wear them while you are working. If you have arthritis keeping warm definitely helps. Good Luck with everything.

  • I am a twenty year old university student, and I can relate! I have a clueless doctor, and getting more treatment always means jumping through hoops (that's Kaiser, I guess). I am not on any meds because my doctor said my blood pressure is normal but on the lower side, and I have a history of dizzyness/blackouts, so he didn't want that to get worse.

    If you find out more about your joint pain, please let me know. I don't exercise, yet frequently I wake up with very sore legs. It's quite odd... My wrists, fingers, ankles, and knees crack a lot too.

    You are not alone. :)

  • I think a website that might help you is wristies.com. I first saw wristies at a scleroderma conference last year. I purchased several pairs for myself & gave some to friends. They have been the answer to my prayers. Wristies cover your a large portion of your hands & your wrists, but leave your fingers open so that you can continue to work. I have summer ones & winter ones. The winter ones have inside pockets to hold air activated hand warmers that the athletes & sportsmen wear (hot hands, mycoal etc). I wear these all day in work & my hands usually stay toasty warm. I highly recommend them to anyone suffering from Raynaud's.

  • Thank you for all the advice, I suddenly feel supported, its a good feeling, Zenabb, I don't remember how I was diagnosed, I had a lot of trips to the hospital when I was younger, because I was underweight and had a lot of blood tests, possibly something came up there/. The blood test I had recently was C protein and rheumatoid level( i believe). I am going to my GP tomorrow to request a referral for rheumatologist so thank you for advising that, I probably wouldn't have thought of asking as Raynauds not taken seriously, in my experience.

    Will keep warm for sure, good to get a better understanding of what causes Raynauds as never really been explained to me so feel quite ignorant of the 'science' of it.

    Kfjgjlgyug: I will definately let you know if i find out more about the joint pain, It does help to do gentle exercise, swimming is brilliant if you can get a heated pool and I have found Pilates very helpful, take the gentle exercises, stretching first thing in morning and last thing at night helps to ease the cramps and hot baths are always good. I tend to exercise my fingers as if I am playing my piano,bending and flexing the joints helps to get less stiffness. Also massaging your hands, feet and legs helps to get blood circulation going :)

    Mamankes: will look into that for sure, i like the sound of the winter wristies, air activated hand warmers are a great idea, I work in the printing workshop alot at uni and it can be laborious as its a cold environment so being able to work and keep my hands warm is perfect.

    Will let you know how I get on with GP!

  • Hello, You seem to have received a lot of sound advice. What is the ginger treatment please.

  • I just got my wristies and they are great! You can get them with pockets to hold heat packs and you can put them so the heat is on top of your hands or in the palm of your hands, they are really comfortable too! I also use silver gloves from this site, but sometimes they seem to make my hands feel cold not sure why that is. I get joint pain now as well and now that I got the wristies I put them on with a hand warmer pack and it seems to really help alot. Everyone has had good advice for you. I hope you can get some relief soon!

  • This is a difficult one that's for sure. I'm a professional fine artist specialising in MotoGP, Sports & portraits. Yes, our hands are our tools but one thing I have to say is keep using your hands as much as physically possible! The constant use keeps circulation going... although it doesn't appear so to you but compared to when your not using your hands believe me it only helps the more you use your hands. Do you take any medications to help with your Raynaud's? I've gone through a long list of medications to finally find one that suites me better than any of the others, it's Captopril. I take 12.5mg 3 times a day (in very cold weather I take it 4 times a day)

    I also have EM really badly so for me it's a case of trying to live my life in a state of constant limbo.

    Don't put your hands into water, it will cause your skin to break down giving you no end of problems. Can you not use fingerless gloves when doing your art? I have been known to resort to surgical gloves over thin cotton gloves when I paint. Not so good for fine detailing work but gives good results when a loser style of painting is best suited to what I'm painting. I have to try to work around any problems/pain/numbness/burning etc. It's very difficult but what else can you do?

    I hope you find a suitable solution to help you continue with your studies.

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