Fed Up: I am quite frankly fed up of my... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Fed Up

Lizzie10xx profile image
10 Replies

I am quite frankly fed up of my Raynauds. It's making me so fed up and upset that I'm left out of socail activites because I can't be outside, I have trouble writing in cold classrooms as my hands froze up (Was unable to even complete my english GCSE) and stress seems to make it ten times worse.

So any advice on coping would be really very muchly aprecitated.

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Lizzie10xx profile image
Lizzie10xx
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10 Replies

hello Lizzie, Try and stay strong and don't ever let Raynaud's beat you. It is difficult at times especially with the cold weather approaching. Try and keep the main trunk of your body warm with thin layers. I find sheepskin gloves warm and am trying to find sheepskin insoles for my boots. Maybe you could speak to the school about increasing the heat in the classrooms. The gel hand warmers are also good and the hot rox, which are on the raynauds website. Keep positive, Nuala

LynnCox profile image
LynnCox

Have you tried Silver Gloves, which are available from raynauds.org.uk/products ? I have found they really help - put them on before your hands get too cold. The reat thing is they are reasonably thin to you can still do a lit of day-to-day things and they come in fingerless as well as full fingered. I am a medical secretary and the consultant I share the office with is a "fresh air freak" and there are times I'm sitting wrapped up in layers while he has the window open. The silver gloves really help, especially the fingerless ones, as I can do my job in comfort.

zenabb profile image
zenabb

Don't let Raynaud's beat you or limit your activities. Beat it by taking measure to keep you warm. Particularly keep your body warm so that the blood does not leave you extremities to keep your heart warm. Wear fashionable clothes in layers. Mountaineers have to wear layers to climb cold mountains and they don't have Raynaud's. Use mycoal bags (I call them teabags) they keep warm for 8 hours and sometimes I put them inside my silver gloves. Have hot drinks rather than cold ones and have a life. Good luck.

Anteater profile image
Anteater

As Zenabb mentioned you must keep your core warm. You may not like this but I would advise you to wear Thermal Vest. You can buy then cheap enough in Primark and they are very pretty and in different colours. You can still wear fashionable clothes but be sensible underneath you must wear thermals and layers. Mycoal handwarmers are very good about the size of a tea bag that you can hold in your hands, and you could buy sheepskin or heated gloves. I have attacks all year round and have an outside hobby - horse riding. I invested in lots of warm clothing and especially heated gloves. I am guessing you are around 14/15 if you are doing your GCSE so maybe your mum could go with you to your GP and ask for a referal to a Rheumatologist. There is medication to help but it soes not cure it and you will still get the attacks. Other than that speak to someone at the Raynauds and Scleroderma Association who will be able to point you in the right direction and if you look on there website you will find lots of information on how to keep warm. Good luck and remember you are not alone.

Rp321 profile image
Rp321

Hi, i know exactly how you feel. You are most definatly not alone.

Really try to not let it get you down, try to find somthing funny in everything.

Maybe try things like having your friends round to yours for dvds, pizza etc so that you dont have to leave the house or maybe end up in the air conditioning (my worst nightmare an air conditioned cinema).

As the others have said always dress well, dont be shy to wear gloves in the middle of summer. The way i look at it is that people who comment or give you odd looks just dont understand.

have you tried heatbands they just go round your wrists. they help me in the summers but have no effect in the winter. have a look on heatbands.com.

keep positive and know you are not alone.

HelenL profile image
HelenL

Sorry to hear you are feeling down and as I'm an English teacher, really sorry to hear about your GCSE! I have Scleroderma and Raynaud's phenomenon and i teach full time. I too don't like cold classrooms but I ensure I always have my gloves and dress warmly- with layers. Woollen mittens are best for outdoors and when you don't need too much movement in your hands but I wear gloves for marking. We had a fire alarm today and, as it was cold and rainy, I wasn't best pleased!

If you need some advice over the GCSE, let me know!

bookworm profile image
bookworm

Hiya nuala, don't let raynauds get you down.When i was diagnosed with raynauds, i was at college. walking down a corridor with a tutor when my hands started to look dead. Went to the doctors, took one look at my hands and said i've got raynauds. The worst i found was air conditioning and going out in the cold cos' of fire alarms.

It took a while to get used to my raynauds, which i know isn't reasuring. putting your clothes in the airing cupboard the night before - i find sometimes helps as your putting on warm clothes. Using the raynauds and schleroma association website - i found has helped. also by posting blogs and questions on health unlocked i found also is useful.

stress i found is a major trigger for my raynauds read, listen to music whatever you find works for you to help you relax. remember your not alone, you control it, not the other way round.

i agree with the other comments don't be shy to wear gloves, stock up on them this time of year.

Lizzie10xx profile image
Lizzie10xx

Thank you for all the helpful comments, I've just started my AS Levels so I think stress is playing a big part in it as well. I've convinced my mum to take me shopping for a new warm coat and some new boots so I can stay warmer in school. Hope things will become better x

Suze932 profile image
Suze932 in reply to Lizzie10xx

Hi Lizzie

I can sympathise as I have Scleroderma and Raynauds Phenomenon and so wear warm clothing or layers most of the year. I worked in a High School for many years and know about temperatures in classrooms and the 'dreaded firedrill', Should your attacks continue to affect your schoolwork I am sure you would be entitled to ask for the services of a scribe(or assistance of a Learning Support Assistant - these are not only for Special Needs students - ) to write down your answers. Stress can also bring on Raynauds attacks so some cool gloves and scarves could be the way to go. Good luck.

Steph profile image
Steph

Hi, My Raynauds gets worse in stressful conditions too. I don't know if you are doing anymore exams but if so get your doctor to write a letter you can send to the exam boards. I did my exams over 20 years ago but after writting to them the exam boards let me be in a separate room with a heater or at the back of the hall with a heater and some allowed extra time due to not being able to write as quickly.

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