Like many Raynaud’s sufferers, I spent the majority of my childhood thinking that my symptoms were normal and that this was something everyone experienced.
I grew up in Minnesota so it was not out of the ordinary to often hear people complain that their hands and feet were cold. As I got a little older and started to look around, I realized that the complaints were not accompanied by white and blue fingers followed by excruciating pain that lasted for minutes or even hours.
I noticed that the onset of their cold hands and feet did not occur at the moment of exposure to cold, that they were still performing tasks without limitations, and they warmed back up as soon as they had a heat source. I remember looking at my friend in complete shock as he repeatedly picked up chunks of snow with his bare hands, formed snowballs and threw them across the yard, like it was a normal baseball on a sunny day. No frantic attempt to warm up his hands afterwards or even wiping the melted ice off of them. Just watching him touch the snow without gloves on was uncomfortable and made my hands hurt. His fingers didn’t turn white or gray. He didn’t express any pain as they warmed back up, no swelling, no itchy or overheated fingertips.
This sparked my curiosity. I casually started asking friends and family about it, still not thinking that I was any different. I can’t count how many times I asked the question, “Aren’t your hands cold?”
Then I found out that my maternal grandfather had suffered from something called Raynaud’s syndrome and it was possibly genetic. Unfortunately my papa passed away when I was 14 so I never had a chance to ask him about it but I started doing my own research. Come to find out, my experiences are not normal but there are a lot of Raynaud’s sufferers like me out there!
I asked my doctor about it once but was told that there was no cure and the only treatments for Raynaud’s sufferers were to wear gloves, warm socks and avoid the cold. Hmmm… not really a helpful or compassionate response, and what about my knees? So with that, I guess you can say I self-diagnosed and came up with solutions of my own.
What I don’t think people understand are the hindrances that come with Raynaud’s. It is so frustrating to have your expressions of cold and pain be dismissed and to be looked at as if you’re being overly dramatic. I like to think I have a very high pain threshold and I do not complain often if I get hurt or am sick, so needless to say, it is difficult not to feel defensive when I am met with that sort of response.
I shouldn’t have to show my pictures or pass on a link about Raynaud’s for someone to understand that it is a legit disease. I can’t just go put on a hat or warmer jacket – it doesn’t work that way. Some of my friends and family are aware of the difference but that’s because they’ve seen it firsthand.
While “Frosties” is a fun and accurate name to be tagged with, it is no joke. You don’t realize how much you rely on toes until they stop working. You can see them but can’t move them as you watch them turn from an eerie white to an alarming blue. Then the anxiety levels increase as you anticipate the pain that is about to follow.
There are times that I can’t walk because of the intense tingling in the balls of my feet and heels, or sleep because of the stabbing pain shooting through my toes. The intensity of the itchiness from swelling and overheating afterward is unbearable. I can’t grip things when it sets in on my hands – this means impaired driving, inability to turn doorknobs or hold a dog leash, or even brush my hair. Forget using a computer mouse or typing on a phone. While I do not suffer as much as some others do, it is still somewhat debilitating when symptoms arise.
Contrary to what non-sufferers think (including some doctors), Raynaud’s cannot be managed simply by moving to a warmer climate. I have lived in Oregon now for over 20 years and it doesn’t affect me any less than when I lived in Minnesota. Maybe even more. It affects me in air-conditioned spaces, when holding a glass with any cold liquid, not completely drying my hands after washing them, separating my toes or fingers from each other for too long, and many other situations.
In fact, as I am writing this, my house is a comfortable 68 degrees, I’m under a blanket, my 70 pound chocolate Labrador is radiating heat against my legs and still, my big toe is so cold and tingling so sharply it is disrupting my train of thought. There is no reason I should be experiencing this if the fix for Raynaud’s is just to “avoid the cold.” Simply put, a warmer environment is not the solution.
So since there isn’t a cure, and few effective treatments, how do I cope? Strangely enough, Raynaud’s symptoms are not always predictable, so I feel like I always have to be prepared. At the very least, I keep Hot Hands© Warmers with me constantly. Drinking cold beverages is a daily trigger for me so I double-cup when I’m out, I use double-walled bottles at home (e.g. Hydro Flask©) and if I drink something from a can or glass bottle, I put a koozie on it. I wear mittens outside, sometimes even when it’s 50+ degrees, and usually put electric warmers inside them – Beskar or Ocoopa©.
The only mittens that work for me 100% of the time, are Minneskonsin Glove Company’s double-lined deerskin mittens with a Sherpa and thermal liner. I’ve had the same pair since I was 15 and they are only now starting to wear down because my dog got a hold of one. The only problem with them is that you have very little use of your hands while wearing them. They are so bulky that they really don’t allow much dexterity but if you are just looking to keep your Raynaud’s from creeping in, they are a must-have.
I have yet to find anything like that for my feet but I’m still trying. I do use a boot warmer from Red Wing Shoes© before leaving the house and that is a good, albeit very temporary, solution. As for other ways to cope with Raynaud’s, I just handle it case-by-case. I have not tried a supplement or any topical treatments to help but that is on the list.
As we keep spreading awareness, my hope is that Raynaud’s is taken more seriously and recognized as a valid condition. The more stories and pictures we can get out there, the easier it will be for undiagnosed Raynaud’s sufferers to realize that what they are experiencing is not a normal response and that there is a name for it. The Raynaud’s Association’s support materials and blogs are helpful in finding temporary solutions as well. Until there’s a cure, we will just keep coming up with ways to cope and not suffer in silence. The pain is real!