Raynaud's Syndrome tactics

8 May 2022

A little over a year ago I started suffering from Raynaud’s Syndrome, which is where I’ll lose bloodflow to my fingers and/or toes when I get cold, rendering them white and numb due to lack of blood, and after which it takes 20 minutes or more to recover. I have to confess that the first couple of times, before my GP explained to me what was happening, it was quite distressing to go through, as it just started without any sort of gradual build up: I’d motorcycled somewhere and when I got there I couldn’t get feeling back in my hands for what seemed an interminable amount of time and I had no idea why.

Now it’s been diagnosed, I am starting to work out how to deal with it. Before I was hit by this I’d never come across it, but I now know that it’s not that uncommon (4% of the population according to wikipedia) and I’ve since met other people who have the same issue. But since I was originally unaware of it, and felt a bit singled out initially until I met others, I thought I’d write a quick post just to share what I’ve learned in terms of working around the issue, and to just try and raise awareness so it might take someone else by less surprise than it took me.

As physical things go, it’s not the worst, at least for someone like me who lives in a moderate climate. Weather reports of temperature are now something that are much more of interest to me for obvious reasons, as I try to work out how I’m going to react if I have to go outside for any length of time. I find it weird that it is not like I have a fixed shift in my reaction to temperature (i.e., I don’t just act as if it’s consistently ten degrees colder), rather there’s a cliff somewhere around 10 to 12 degrees where above that everything is normal, and below that I increasingly feel exaggerated effects in my digits. That’s a bit of a simplification, but you get the idea.

Anyway, what follows is a list of things I’ve taken to in dealing with Raynaud’s - if you have any other tips please do drop me a line!

Daily Drivers

Laura has been a huge help, finding many of the items I list here, including the first item that I’ve taken to using almost consistently, which are my wrist-warmers:

My hands on my laptop keyboard where my wrists and hands are covered in woolen tubes that leave my thumb and fingers free.

All my work tends to require finger dexterity (typing at a computer or doing workshop tasks), so these cashmere wrist-warmers from Turtle Doves keep my hands warm and my fingers free. I have some other regular wool wrist-warmers too, but the cashmere ones are very comfortable for all day wearing as they’re thinner whilst still being warm, and they’re made from recycled material, which is a nice bonus.

Although it is keeping my fingers and toes that show the primary symptoms, I’ve found (and others I’ve talked to have also agreed) that keeping your core body warm is key, not just trying to protect your digits. Thus I’ve now taken to wearing more thermally lining style long-sleeved t-shirts rather than regular t-shirts, such as the heat-tech range from Uniqlo.

Proactive-heating

One slight irony of Raynaud’s is that once it’s triggered, conventional solutions like putting on gloves doesn’t help, as your hands aren’t generating heat - you’re just trapping the cold. So a common recommendation I’ve seen, and again something Laura managed to procure for me, was USB re-chargeable hand-warmers. Whilst they’re no magic cure once you start going numb, they do help bring things back sooner than they otherwise would and can stop it getting worse.

For winter I’m also now armed with a serious pair of electrically heated mittens by Therm-IC. Going for a walk or out jogging when it’s close to freezing then I have these on. I do feel a bit of a dork running around with a giant pair of mittens on, but then I can still go out running rather than being stuck indoors, so fuck it (and I suspect the looking-like-a-dork ship sailed for me a long time ago ;).

I also have some electrically heated socks too, these ones made by Ororo. These socks are great, even when not powered on they keep me really quite warm, so I regularly use them without power, but that powered option is good to have for when it really gets cold. I have to confess, I’m somewhat skeptical as to how much stomping they’ll take (just personal fear, I’ve no evidence that they’re anything but robust!), so I’ve not used them for running, but they have lasted perfectly well thus far, particularly when motorcycling. Which brings me onto the next section…

Motorcycling

As I mentioned above, the first time Raynaud’s hit me I was motorcycling. It was actually a warmish day, but I’d motorcycled for forty minutes or so, and a combination of windchill, gripping the handlebars tight in constrictive gloves, and vibrations (which is another of the listed causes for triggering Raynaud’s) brought it about. The fact that motorcycling seemed to be a perfect procure of Raynaud’s was somewhat concerning given how much a part of my life it has been.

I od have heated-grips on my motorbike, but they only heat the inside of my hand and I find that in terms of Raynaud’s triggers the windchill dominates. Thankfully a solution to that has been huge handlebar baggies, the kind you see scooter couriers use in winter but scaled up for my large adventure motorbike. They’re made by Hippo Hands, and they’ve been something that’s stopped me becoming a purely summer motorcyclist.

A picture of the front, top half of my KTM motorcycle, showing both ends of the handlebars to be encased in bags, each with an opening for my respective hand to access the controls.

These are quick to whip on and off, which means I don’t need to worry about someone making off with them, as I can quickly stash them in my paniers when I park up. The only downside I’ve hit with them is more down to KTM’s control layout than a fault of the Hippo Hands, which is I can’t operate the cruise control with them on. That aside, these have been a great investment.

I’ve also swapped out my regular summer gloves for others that are less constricting. I struggle to get motorcycle gloves that fit me properly anyway, on account of having broad hands. The issue I’ve had as a result is that if I get gloves broad enough for my hands, the fingers are a bit long, so the material bunches up under my fingers as I grip the handlebars. On my todo list is to get a pair of gloves altered to fit, Hideout Leather in Essex will do this, but for now I’ve just found a cheapish pair in a different style to what I’d normally wear that will work for me.

Summary

As a measure of success, in January I had to make a long trip at short notice on the motorbike, driving for four hours on the motorway in temperatures around 2 to 4 degrees celcius: not ideal at the best of times, but with Raynaud’s something that gave me considerable pause for concern. However, between the hippo hands, my heated grips and seat on the KTM, wearing lots of layers, and having my Ororo socks I was equipped for it; and I made sure to keep my core temperature up by stopping regularly for hot cups of tea. In the end I made the trip in good time and kept numb digits at bay.

A year before it’d have seemed silly that such a journey would be so fraught, but this felt like a genuine triumph given the circumstances.

This list of things I’ve used to fend on Raynaud’s symptoms is by no means exhaustive, but a lot of the rest is just wearing winter gear when it’s not quite winter: fleece linings and layers are now a much more common thing for me much more of the year.

Obviously what works for me might not work for others, so I don’t want to leave you with the impression that if you just buy ALL TEH GLOVES you’ll be fine. But hopefully some of this may help someone pull together the set of things that does work for them.

And a huge thanks again to Laura who, as I mentioned, got me a lot of these solutions and has been generally encouraging in trying to fend of any signs of defeatism in letting Raynaud’s stop me doing things.