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’m very grateful I found this group, it helps me feel less alone with this .
by L.A. (Facebook)
Very Grateful I Found This Group
This is awesome! It’s great to see this so others can see exactly what we live with everyday. Thank you for making these!!
by S. M. (YouTube Follower)
This Video Is Awesome!
Thanks for all the info you guys provide.
by J.L. (CA)
Thanks for All the Info
This nonprofit made me realize I wasn’t alone, and referred me to some great gloves that have changed my life!!
Made Me Realize I Wasn't Alone
Very helpful site :)
by T.P. (Pinterest Follower)
Very Helpful Site
Great website. Thanks for the helpful information and products!
by C.S. (PA)
Hi, I’m glad I found this page, it helps to know that others suffer from this, too…Thank you for your page : ) x
by S.C. (Facebook Fan)
Helps to Know Others Suffer, Too
I have enjoyed belonging to the group (the Forum) and participating in it. Thanks for a wonderful site.
by L.D. (GA)
Thanks for a Wonderful Site
…None of my local doctors new what was wrong with me…Your website helped me learn more about it, and I am happy to know I’m not the only Smurf around.
by L.G. (CA)
Website Helped Me Learn More
I haven’t spent much time on this forum but I have to say I have learned so much about my own condition…Today I used a tip that I read on this site..I am happy to say that it works!
by P.M. (Raynaud’s Forum Member)