Living with Raynauds: I have had... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Living with Raynauds

raynaudssufferer profile image
8 Replies

I have had Raynauds, well been diagnosed with it for about five years now and it sucks. I have people making fun of me for it and everything. I am a junior in high school and all I wanna do is scream at everybody. I just wish I knew what i could do to explain to everybody.

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raynaudssufferer
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8 Replies
Beatrice profile image
Beatrice

Hi, It is an illness so it's not your fault. If they laugh at you they are just ignorants, just ignore them. Try to put some hand cream before you go out right up to your elbow, I found out that it helps. Wear gloves if you can, hold cups of tea, coffee, or just hot water it helps too. Keep your hand in your pockets. You are not alone.

froggyjc profile image
froggyjc

I know its hard, people are cruel. Try not to let them get you down. I've had Raynaud's for about 10 years now. One of my triggers is stress, so the more you let your peers bother you, the worse it is for you. Just tell them you have a disease that causes poor circulation and that you get cold VERY easily. I haven't had much luck with lotion. But do carry gloves with you. I've found that layering clothes keeps me warmer and isn't as noticeable to those around you. I can't hold on to coffee, tea, or hot water, too much heat physically hurts. The real key is to listen to your body, it will tell you what you need to do. I know that's not really concrete help, but for me it is staying warm and wearing gloves alot. I even have fingerless gloves to use when typing. If there is someone you can talk to, then vent your feelings, if not this is a good place to vent as we all understand. Just remember that high school doesn't last forever, it may seem like it now, but it really doesn't.

sgbee profile image
sgbee

Being in high school with any disease is hard! As adults, we get more understanding, although I occasionally get stares when I am wearing gloves indoors. No problems. Here is what I would do--get the most fun gloves that you can find! Wear them with confidence and a smile. I wear striped ones and bright ones! Same with socks. Froggy is right--high school doesn't last forever!! Hang in there!

zenabb profile image
zenabb

Just threaten to freeze them with your hands and keep cool.

MARCY profile image
MARCY

You are still young, therefore everything that is said or done to you becomes a mountain intead of a molehill. Learn all you can about Raynauds...This place is good for that. Read all the questions and answers, even though they may not directly apply to your case yet. You'll have stuff to educate your friends about what can happen to you in the future. The more information you have, the more questions you can answer. Instead of getting angry, ask them if they are afraid it is contagious? Inform them this is an autoimmune diesease and ask your teacher if you can do a paper on autoimmune diseases. Offer to explain what happens to the body when you are seeing these things happen. Tell them that alot of these disorders do not appear until their later 30's & 40's. You will find alot of young people are getting these illnesses earlier nowadays. And the more information they have the faster they can be diagnosed for help. Most people go years without a diagnosis before they get help. There is also The Scleraderma Foundation & aadap.org (I think thats right, it's here in the information) rctherapy.net...all places with differet information for assistance. Good luck. I drink Spiced Apple Cider everyday, coffee is a stimulate and not good, it will add to your stress level, tea as well, so try hot chocolate or spiced cider, keep the packets in your locker and add water, then heat till hot enough to mix. Delish!!! & Inexpensive.If you don't like apple flavor, don't worry, it doesn't taste like apple! I'mnot sure where you live but in Phoenix,AZ. Cat Davis is 20,and on FB, she knows what it's like to deal! You need friends your own age too! The Scleraderma Foundation can help you with support groups in the US, and hopefully near you!

AliW profile image
AliW

Bless you that's tough... people can be so insensitive especially when they actually don't know what to say.....say that it's complicated & they should count their blessings they don't have to deal with what you do ....you are brave & they will remember you for being brave .. press on & remember you are NOt alone Big hugs, Ali in UK xxx

bookworm profile image
bookworm

Hi i got diagnosed when in was in college, so its not easy when your young, and its often that people don't understand what your going through. Its hard having to keep explaining why your wearing gloves, but if you need to wear them wear them. I agree with the previous blog as well. Its important to stay calm, and not to get too stressed - easy said then done - i know. Stress is one of my triggers of my raynauds - find whichever the best way for you. take care

MAMANUKES profile image
MAMANUKES

Having lived with Raynaud's for about 25 years, I've heard it all! I moved to Florida about 9 yrs ago to get warm, but I wasn't thinking about the airconditioning! It's really a problem.

Keeping warm is the most important thing for me, Cuddle duds, long underwear are fantastic. They even have colors & prints, people don't have to know you're wearing undershirts, but they're great!

About 1 yr ago, I discovered wristies (wristies.com). They have been a life saver for me. I bought them in all different colors. I have my Summer ones & my Winter ones. The Winter ones have a pocket to put in the little air activated hand-warmers that sportsmen & athletes use. I wear them all the time in work. Do I get a lot of questions, you bet, but that's my time to explain Raynaud's Disease.

I really like Marcy's idea about doing a paper about Autoimmune Diseases, not only will you learn a lot, but who knows, you may help someone else.

One last suggestion, drink liquids at room temperature rather than cold, or use an insulated holder or cup, a tervis tumbler is a good suggestion for a gift if somone asks. Good Luck!

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