Raynaud's All Year Round!!

[dawn1972]

Any Suggestions.... I have severe Raynaud's affecting my hands, knees, and feet. I wear electric gloves and insoles. Doesn't help much. I live where there are four seasons. Unfortunately, I cannot tolerate the summer months either. There is not a day or an hour that goes by that I do not have an attack. In the summer if the wind blows I get an attack!! Yes, I'm very colorful all year. Cannot handle air conditioning, cold, wind, or the sun going down!!! Any suggestions.. I've done heat packs, rice packs, several different medications. Arterial ulcers starting again on my fingers.....

[uknlv]

No suggestions from me as I have the same issue, it seems to be staying year round. And the brief bit of warmth we had here I still had attacks. I just use the silver gloves most of the time and try to keep myself as warm as possible.

[dawn1972 in reply to uknlv]

What silver gloves??

[LynnCox in reply to dawn1972]

Select Socks and Gloves fromthis page: raynauds.org.uk/shop

I find they help me all year round.

[zenabb]

The wind, the change of temperature, the air conditioning, the cold are our enemies. When I go somewhere air conditioned, I take with me a small flask of Irish whiskey. When I arrive at the cinema or the theatre I order a hot coffee to take in and once seated I add the whiskey. It's nice and it does the trick. But I also sit there in my coat and silver gloves whatever other people are wearing.

[Anteater in reply to zenabb]

Zenabb, I love that idea of the small flask of whisky xx

[dawn1972 in reply to zenabb]

Ya, that would work for a short time. What are the silver gloves??

[zenabb in reply to dawn1972]

You can buy them from the Raynaud's & Scleroderma Association. Go to them on line. They are thin enough for me to keep them on even I am fiddling in my handbag or doing anything and they are cheap and washable.

[lifeforce]

I don't know how long you have had scleroderma, I have had it 12 years and the symptoms with the cold were worse in the first 7 years or so. I do get blue fingers but the total body freeze I used to get is not so severe. I know it sounds simple but the best thing I have used for digital ulcers is the thick white baby rash cream like Desatin. The zinc in it stops the infection and starts healing. I have some large, deep scars from before I started using it. Good Luck!

[Anteater in reply to lifeforce]

Hi, I will definately try Desatin - I have an ulcer again on my index finger so it is on my shopping list for tomorrow xx thank you xx

[dawn1972 in reply to lifeforce]

Officially diagnosed in 2005. All symptoms including Raynaud's starting in 2000. It's only progressed. I used all the creams and now have prescription creams. The pain of the arterial ulcers is horrid. I have to use lidocaine or I can't stand the pain. But the docs say limit the lidocaine because in inhibits healing. I've had ulcers on my elbows that were surgically debrided x2.

[Yorky]

Hello, I suffer all year round, but definitely worse in winter. Have you ever had Ilioprost? I am assured by my consultant that it works, and I think it does a little. I have it for 6 hours every month. No need to stay in overnight and the side effects are tolerable for this length of time.

[dawn1972 in reply to Yorky]

Not had llioprost. Been taking Revatio for over three years (not effective). They want to try tracleer, but I'm not sure about that one. Do you feel llioprost has given you the best benefits so far. I've done stellate ganglion blocks (too many time),

[lifeforce in reply to dawn1972]

my doctor was going to use tracleer a few years ago,it was incredibly expensive, about 3,000. a month. my insurance agreed to pay 2,400. but i could not afford the 600. a month. also i have seen tracleer now has recalls on it for side affects. also the desitin cream will help your ears from crusting if you use it every night.

[Yorky in reply to dawn1972]

I am assured that it works and that I need it, Yes I think it does help, but nothing is completely effective. I know that it thins the blood, People with Scleroderma have particularly sticky blood, so it must help it to flow. I think it also helps to keep my skin supple

[dawn1972]

I'm even turning black now and again. My nose and ears are starting to be affected and the raynaud's is up a little past my wrists now....

[Gwatyans]

I also have Renauds all year round. I wear lots of 'layers' to keep my body warm, silver socks and gloves as 'liners' and also silk gloves from Decathlon. I take gingko biloboa all year too, more in the winter. I have thermalyte glove for getting things out of the freezer and I use a cloth to open the doors at home because all the handles are metal and can be very cold. I still get terrible chilblains (I use cream) and 'freezer burns' from touching anything cold. I think the only solution is to move to a warm climate!

I love the idea of a flask of coffee laced with whiskey in the cinema!

[MAMANUKES in reply to Gwatyans]

Warm climates sound like a good idea, but we have air-conditioning everywhere. I think, I'm worse in Florida tham I am in Massachusetts in the winter. Just a thought to ponder.

[OXMOAD]

Y'all don't forget to take your protection if you go to the grocery store for when you get to the freezer and refrigerated sections.

[dawn1972 in reply to OXMOAD]

Take winter coat and gloves into grocery store all year long. I def get a lot of odd looks.

[uknlv]

lol so true dawn1972, I get weird looks all the time as I have my silver gloves on almost always. Have a pair in the car and a two pairs in my purse, one with fingers one without! And I have to wear them in most stores due to the air conditioning. But especially in the freezer and refrigerator sections! And the looks you get.

[Tatum1791]

Has anyone found socks and/or shoes that seem to warm the feet better than others? I am having a really hard time keeping my feet warm!

[scotgirl in reply to Tatum1791]

Have you tried thermal socks? I bought some from Asda last winter and they kept my feet really warm! I hope you find something that helps!

[Yorky in reply to Tatum1791]

I was recommended (on this site) cashmere ones from Brora and they are the warmest, softest ones ever, but expensive. I am busy knitting my self some from wool,silk and cashmere - very slow going though as I do easily get cramps in my fingers

[fingadung in reply to Tatum1791]

Oh yes! Just google Raynauds socks and you'll be so surprised what's out there, depending on how pricey you can go😉

[scotgirl]

I've had Raynauds for many years and it is bad during the summer but definitely much worse in the winter. I have struggled to find things that make a difference, have tried iloprost at least 9 times but I struggle to tolerate it so it generally doesn't work well for me so I've given up on it just now. Weirdly I don't find gloves very effective as I feel they trap the cold in my hands rather than keep them warm I do use a zippo hand warmer which can stay warm for up to 12 hours and definitely works well. I hope you manage to find ways to keep warm this winter.....

[fingadung in reply to scotgirl]

My feet are more painful than my hands😩 Even during summers as well but worse during cold weather😞 My fingers get the purple, blue, blackish thing but my feet tend to be normalish, red, white, frozen numb while feeling like balls of fire🔥

[Kate2]

Wear a hat! You lose a lot of heat if you don't keep your head covered. I also find mittens better than gloves if I have to be outside. And I love my fur lined Skechers for keeping my feet warm. but when things really get cold I head to the Florida Keys.

[Coldfeet]

Exo heated jackets and belts are very good - not cheap to buy but cheap to run as they use rechargeable batteries (will help to reduce your central heating bill if you wear at home). Even though it is our peripeheral parts that suffer most, it really does help to heat up your middle. I use the jacket or belt for home or short trips out - anything where I will be in a cold place for more than an hour or so I us a stick-on disposable heated pad on my back or tummy. Exo design for motor cyclists but their products are very good for us. Also I have just this weekend bought a snood from Primark for a fiver - amazingly I have been too hot!! I have also booked a few days in Southern Spain during February, a bit nearer than Florida but the same idea!

[GinaAnn]

I was given an RX for this a few years back, thinking I was allergic to something, but I am now finding it goes with my new issue of Scleroderma. It works like magic. I put it on at night and most of the time by the next morning, I find healing results. I will have to find the tube to share the name. If anyone is interested to get this scription write me at [e-mail]

[living-the-dream-ssc-ray]

I live in UGG boots summer and winter, wearing lots of layers, obligatory pair of gloves and winter hibernation! I have had Iloprost 3 times in the past but the side effects are so horrendous I prefer to just not go out! Thank goodness for the internet! Although, my gas bill is a small mortgage each month!

I have also had a 6month course of Bosentan which did reduce the number of ulcers as well as, I have recently started to use a creme made from the fruit Papaya, which has taken the 'chill factor' away in that my hands and feet feel warmer. Unfortunately it is only currently available in Australia. Mcarthur Natural Products are the manufacturers if anyone wants to check it out!

I am trying to view my hibernation time as a similar experience to the Big Brother house without the cameras and without crazy house mates lol as well as dreaming of the Carribean beaches with my eskimo outfits a long distant memory

[amet47]

just ordered electric slippers my feet are blue at the moment and the silver gloves and socks not helping much lost feeling in both big toes even when they are warm

[AtlantaJana]

I also suffer from Raynauds all year. I have been noticing that my skin is peeling like crazy. It started around the nail beds, then spread to the tops of my fingers and into the webbing on my hands. Here's the crazy part...the skin on my face is starting to look very odd, especially around the hair line! I have to actually use tweezers to peel the skin from the larger areas of my forehead! I have always used moisturizer on my face and even sold skincare products at one point so it isn't that I don't take care of myself. I also drink tons of water so I am not dehydrated. I know this sounds very strange and perhaps I am reaching for an answer but since I do suffer from Raynaud's and have awful purple, red, and white discolorations on my fingers and toes from lack of circulation, I thought these issues could be related and attributed to circulation issues. Has anyone ever heard of anything like this?

[Hidden]

Hi I am new hear and a learning curve for me. Do you realize it is not about hot or cold it is about the Change and keeping temperature constant the thing to maintain, and its bloody complicated. So a nudist beach abroad on a warm windless island would be ideal for summer, if only hey . However have you tried a freezer suit for winter, like a thermal boiler suit for working in cold stores and freezers. I acquired one to help with how i was feeling before i new about Raynaurds. bloody brilliant it is ,check them out Ebay