Someone to talk to?

Hey everyone,

Im new on here and suffer very badly with raynauds.

I find it really hard sometimes to talk about it because none of my family or friends have it and although they try to understand its not the same.

It affects me really badly, my feet will turn completely white, freezing cold, numb, painful and i have really horrible bad sweats, ill come home from college and my socks and shoes will be literally soaked!! It makes me really upset sometimes especially because i always have to wear layers and dress for warmth but im a 16 year old girl who just wants to look nice and be myself, not be huddles up like a hermit all the time. Does anyone else feel like this?

Can people share their stories with me? I'd really like to talk to people who know what im going through because hopefully it will help me come to terms with this condition that i will have for an incredibly long time to come.

Thank you for taking the time to read this :)

I look forward to getting to know everyone more and hopefully things becoming brighter.

xx

18 Replies

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  • hi i got diagnosed, when i was in college, it wasn't easy having to wear gloves, all the time. Try thngs like putting your clothes in airing cupboard the night before, so they are warm when you put them on in the morning. Have you tried the RSA website, for tips and advice. Have you tried talking to your GP, about how you feel and how your Raynaud's is affecting you.

  • Hi, i put all my clothes on my radiator and wear leggings underneath my clothes just wish i could stop the sweats on my feet, not pleasant when you spend the whole day in the same shoes and socks.

    How did you deal with your raynauds? what is your experience?

    I have talked to my GP and got referred to the hospital I am currently awaiting a London hospital appointment to see the main person who deals with circulation and stuff. It been 3 months since i was meant to have an appointment though so who knows when i will get to talk to someone proffessional.

  • Hi i'm on my medication, nifidepine 5mg which i've been on a couple years, last resort though, drinking hot chocolate. When I'm out I'll use the hand dryers to warm my hands up. I wear scarfs when i can indoors and gloves-have had a lots of q's about that.

    it took me a while to get to use to raynaud's, i got diagnosed when i was college, when a college tutor said my hands looked dead. my gp at the time took one look at my hands, and said i've got raynauds, a blood test confirmed it wasn't anything else. found that my body's central heating system, doesn't work properly i would be warm, yet my hands would be cold. have been having problems with an ingrowing toenail - which i've had done five times, touch wood it is ok at the mo. Its important to look after your feet, cutting nails correctly and wearing comfy shoes.

    found that people have either heard of raynaud's or haven't got a clue.

  • Hi, i hope you don't mind all the questions but is the medication helping you? and did your raynauds get better or worse as the years went on?

    It's really strange, i have raynuads but it mostley affects my feet, they always have cold sweats and are freezing, go numb etc. I have had an ingrowing toenail on my big toe of each of my feet done but they are growing back in again! On one of my toes i had to have 5 injections because my blood cirulation was kaput and it wouldn't numb (you have to laugh about it!) :)

    When i told my teachers they didn't have a clue what it was and neither did my friend, I think thats why i can't really talk to them because they have no idea.

    Best wishes, DeGreenifyme.

  • HI not people know about raynaud's. Also raynaud's attacks change are often caused, by a change of temperature. my medication often helps moderate the attacks, when i remember. my raynauds hasn't got better, nor worse. i do have one hands which is affected more than the other.

    Touch wood my toenail which has has overgrown, after been removed by a podiatrist at my local hosipital hasn't ingrown again. so i would recomend seeing your gp about getting them removed-painful i know, but i had problems with the toe getting infected for about three years, sore, only could wear sandals most of the time-cold i know.

  • Welcome and it's nice to hear from you. I have scleroderma with Raynaud's as well. I also suffer from sweats but i also have the menopause to deal with as well. Layers of clothing are great as I can peel off quickly whenever one comes on. You should try and stay as healthy as possible with daily exercise, plenty of fruit and veg and don't ever smoke. Maybe share with your school friends what you are going through. You have youth on your side. Try and stay positive and don't let Raynaud's take control. You take control of it. Wishing you well, Nuala

  • Thank you, thats what i keep saying to myself that hopefully as i get older it will get better and may even disappear altogether :) Have you found anyway to control the sweats? I talk to my friends but some of them have problems to and i feel as if im dumping all my stuff on them and although i talk to my family they do not experience what i feel and sometimes its nice to talk to people who are the same.

    Thank you very much for your comment :)

    I wish you well also, DeGreenifyMe x

  • Hi DeGreenifyMe. Have you been on the RSA website? We have lots of information which may help you to understand your Raynaud's better. You are certainly not alone! If you would like a free information pack, email your address to info@raynauds.org.uk. All the leaflets are downloadable from our website also.

    Very best, Hannah.

  • Yes i have thank you and found some useful information :)

    This site is brilliant to talk to people because sometimes i do feel alone!

    I have emailed that address, thank you.

    Thank you for the support, Tulsa.

  • Hey DeGreenifyMe!

    I've had R's since I was a child, too...I also have hyperhidrosis, so the sweating is quite familiar to me. Layered clothing truly is a must to be outside in winter weather. Careful with cotton fabrics; they stay wet when you sweat. Look for soft wool or products made for athletes that absorb the dampness. I try to alternate my shoes so they can dry out between wearings.

    And yes, please check out other sites and groups, where you can find tons of info and support :)

  • Hi,

    The sweating is horrible isn't it?! i went to the rhuemotologist and they said sweating is common as the sweat glands don't quite know what their doing because f the changes of temperature in my feet. I think it would be a lot better if the raynuads didn't come with sweating! :) I change my socks in the toilets at college (makes me feel kinda silly!)

    Thank you i didnt realise that cotton fabrics were worse than some others, I shall look for products made for athletes, i didnt think of that :)

    Did your raynuads get worse or better as you got older?

    Thank you, DeGreenifyMe x

  • Mine has fluctuated, pretty much with the weather, but seems to have worsened in severity over time. It did get better during each of my three pregnancies, from the increased blood volume...(future relief for you! )

  • You need to wear layers but you don't need to look dumpy, you can wear layers of fashion things. Make yourself look as nice as you would like so that you like yourself. It's important. You didn't say what you like doing, tell us and we will try to help you to lead a good life.

    Are you on medication for your Raynaud's? Why are you seeing a circulation consultant, why not a rheumatologist.

    Talk to us

  • Thank you, I'm really concious about what i wear, I'm shy at college so what I wear is important to me so i don't become even more shy because of the way I look. I love drama and musical theatre and take drama at college as well as history, English, and philosophy and ethics.Acting is my way of expressing myself as im not loud or confident at college. But I'm really worried my raynauds will prove to be difficult in the future with acting but i can't see myself doing anything else :) I love seeing west end shows and concerts which is helping me with my raynauds as I wouldn't be able to cope without my music!

    I was on come medication called: lorsatan potassium but it was having no effect so i went back and saw the consultant they then referred me to a rheumatologist at the royal free hospital in London but i haven't yet had an appointment so fingers crossed ill get one soon.

    I really appreciate the support, so much.

  • Sorry I was going try and cheer you up, butt my age group is out the window. let just say I suffer more with the hot/cold body side, i'm not treated for it, but even my foot bleeds 24/7, a nurse calls twice a week to dress my foot, but thats all my help, may be young your Gp's will care for you more.

    Good luck

    David

    Farnborough.

  • Don't get stressed about it - stress brings on bad attacks too. Good luck.

  • I'm stress 24/7 over all that I suffer with my health, and I wish to save NHS money in going to my grave. early.

    Bye

    David

  • Hi DeGreenifyme,

    You can dress very fashionable even wearing layers I have managed it and I'm now in my middle fifties my daughter who is in her 20's has managed to dress as she wants to with layers and always looks good.......So it can be done!

    We use thermal under clothes which these days look like reg T-Shirts and in a variety of colors then you go from there.... this will keep you warm but also looks good combined with other clothing as well.

    As to your foot problem have you thought to take a change of socks or what ever you wear during the day with you to change into say half way through the college day? and also maybe a change of shoes as well?

    I wish you well and please just c hat to me if you need to

    I have had this condition since childhood and I can relate

    to what your saying.

    All the best

    Bella

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