Ronni (FL) shared her frustrations dealing with fingertip ulcers caused by Raynaud’s attacks: “inadvertently banging it against a desk, poking my hands in a pocket or handbag only to get stabbed by a pen or a sharp object, etc. It’s excruciating — and it may make the ulcer worse.”
Fortunately Ronni found some relief at her occupational therapist’s office via a simple fabricated fingertip protector/splint, custom made for all affected fingers. The therapist had some plastic sheeting that she could heat and shape to perfectly fit each affected finger. The device was folded over the fingertip at the top and reached to the middle joint to allow far more flexibility than standard splints. (Note: There are lots of colors available besides the purple shown in the photo.)
Here’s how Ronni describes the cover: “It’s mostly open in the back of the finger so it doesn’t make the finger too hot or restricted. Self sticking tape or Velcro® strips can be cut to fit and keep the device in place (and they can be easily removed by the user). The device is washable and can be re-used repeatedly.” Ronni finds these devices far superior to metal splints and more comfortable and protective than Silipos finger cots, which can feel too tight — placing more pressure on the ulcer. If you’re interested in trying one of these covers, Ronni suggests Frosties ask their doctor for a referral to an occupational therapist who might make a similar device for you!
Gary (Facebook Fan) shared a creative solution for reducing attacks in the bathroom, which, as he describes it, can be an obstacle course for Frosties, “lots of cold chrome, tile and porcelain and to top it all freezing cold water.” In particular, he finds it challenging to get the temperature right in the shower, as exposure to running water that’s too cold can trigger an attack. His solution is an LED shower head (as pictured). “This gives me a good idea what temperature the water is visually saving me yet another silly episode……Very cheap and easy to fit, plus they look great at night.” We never knew these products existed until Gary mentioned his experience on Facebook. Thanks so much, Gary, for sharing this idea!
Jessica (IL) tells us that Under Armour’s Coldgear® “helped me a ton.” We haven’t tried them, but see that the line includes tops, bottoms, footwear and accessories. She knows how hard it is to find products that work for Raynaud’s sufferers and was “super excited” to share her solution with us. Thanks so much Jessica!
Katelyn (Facebook Fan) found a creative way to deal with cold drinks when vacationing through the Oregon caves. It was August, but her hands were (as we all can understand!) cold. Since even Frosties don’t always think about packing gloves when traveling in August, she needed a comfortable way to hold iced drinks. Her solution – a travel mug.
Katelyn says, “I use it for hot beverages and cold. It insulates the cold better than the average cup. I made sure to get one that has a better lining, and I can’t feel the cold through the mug. It works for me so hopefully others can try it for themselves, as well.” Insulated cups and glasses are an excellent solution for us Frosties, but a travel mug is even better, as the handle gives us another option for avoiding exposure to the cold contents!
I so enjoy your great newsletter and thank you for it…for your valuable contribution to our lives!!
By A.W. (LA)
Enjoy Your Great Newsletter
Just learned I have Raynaud’s…Glad to have found this org!
by N.H. (Canada)
Glad to Have Found This Org!
As a fairly new Raynaud’s sufferer, it’s great to see this organization spreading the word and providing support.
Great to See This Organization Spreading the Word
The tips, the different ways of treating it, knowing the experiences & taking the good advice of other people who suffer from (Raynaud’s) and help me to deal with this…I am constantly checking the page, to see the posts to take new ideas that will be useful for me.
by M.H. (Mexico)
Constantly Checking for New Ideas That Will Help Me
Great to find you here! Trying to thaw out for over an hour…
by S.M. (Facebook Fan)
Great to Find You Here!
Thanks for your website, my first visit has really helped!!
by R.L. (OH)
Thanks for Your Website
I found the Raynaud’s Association online and joined right away. Thank you for putting so much helpful info on the web.
by P.K. (MO)
So Much Helpful Info
This organization helped me with ways to explain what Raynaud’s is and how it affects me and my family.
Helped Me Explain Raynaud's
Kudos. Great web site. Keep up the good work.
by E. C. N. (NY)
I am so happy I found this page!!!!! Just changes my life…Thank you so much for having this page!!! It’s great to know there’s people who understand this struggle.
by T.F. (Facebook Fan)