Living with Reynaud's Disease

Living with Reynaud's Disease

My first real memory of dealing with it was when I was about 10 and stayed after school for a soccer practice - or game? Those details are fuzzy. I just remember waiting outside for something organized to start happening and getting really cold - painfully cold in my hands. Soccer is a fall sport in Maine, so it was probably September-October, and probably not that cold outside. But my hands starting HURTING and I started complaining to my friends. By the time the coach came by, one of my hands was completely white in all the fingers with the palm a deep purple, and the other hand was quickly catching up. It totally caught the coach off-guard and I remember him sending me into the bathroom to warm my hands under the water. Which REALLY hurt. And took a while to actually begin to work. I came back out after about 20 minutes with normal looking hands and practiced and was fine. I know - anticlimactic. But it was the first instance I really remember thinking like, why aren't other people's hands doing this, too?

I was officially diagnosed with Reynaud's Disease in high school, but I struggled with it for years before I was given an official diagnosis. It's less of a disease - poor naming?- than a medical condition, in which small artery spasms cause episodes of reduced blood flow to the fingers, toes, and less commonly the nose, ears and lips. These episodes result in the fingers, toes, or affected areas turning white, blue, and finally a deep purple color. Usually numbness and pain accompany the reduced blood flow, and as blood flow returns to the affected areas is turns red and burns. Sometimes it lasts minutes, sometimes hours, and there is no cure or real treatment. It is usually triggered by cold and sometimes even emotional stress. 

It is suggested that about 4% of people have the condition, of which there are essentially two types; the first, Reynaud's Disease or Primary Reynauds (which I have), affects mostly women with an average onset between 15-30 years. Secondary Reynauds, also called Reynauds Syndrome, is often seen in older people or as a result of another condition. Both forms are far more common in cooler climates. I'm 26 now and still deal with it constantly. It's a pretty low-key issue, which selfishly speaking is really nice. People don't usually know when it's happening unless I point it out and I can circumvent the issue oftentimes if I'm paying attention and am properly prepared. I've never had a time when I felt like emotional stress triggered an attack, but I can think back to being in situations of extreme stress and absolutely remember numbness in my fingers and toes, I just had never really known the two were related. 

Growing up in Maine was tricky. I ALWAYS wore gloves and doubled up on wool (I know, but this was pre-vegan) socks in my 'bean boots. We spent a ton of time outside in the winter, but it was never weird that we were freezing afterward because everyone was freezing afterward. I spent a ton of time in hockey rinks in high school and just always thought I was more prone to the cold than anyone else. It wasn't until about my Junior year after a serious soccer concussion that the doctor told me that on top of being out for the rest of the season, he thought I might have this thing called Reynaud's because my fingers were cold, purple and swollen the whole time I was talking to him and we were inside. Go figure.

Taken about 5 minutes after onset of symptoms in 65 degree weather

Taken about 10 minutes after onset of symptoms in 65 degree weather

I moved to California not long before I went completely vegan, so I'm sure the control of my condition is due to a combination of the two lifestyle changes converging. For one, I'm rarely in very cold weather anymore without being ready for it. That said, I had a terrible foot injury a few years back where a doctor again confirmed my diagnosis. On top of wearing more supportive shoes, she suggested I started wearing warm socks again. Until that point, it simply had never occurred to me that by ignoring the condition, I could be doing real damage. I love walking around barefoot, even outside, and even when I know my toes are too cold. If persistent and ignored, Reynaud's can cause gangrene and ulceration of the fingers and toes. The lack of blood can lead to chronic infection under or around the finger or toenails.  Southern California's warm weather definitely keeps me out of year round mittens, but I still have to often wear a fleece headband on runs - no matter the temperature - so that my ears won't ache, and always wear socks and a sweatshirt around the house when its anything less than 60 degrees.

While thought hereditary, people with Primary Reynaud's have seen relief by avoiding the cold (duh), eating a healthy diet with regular exercise, and avoid things like caffeine and smoking, which affect blood vessels. There is a hormonal component, and some people report birth control swaying it's affect on them. I personally haven't noticed, and I am on a low dose IUD. As someone who follows a clean, organic, vegan diet, I also avoid sugar, caffeine, and preservatives, and try to take in plenty of fresh, raw veggies. I workout regularly, including lots of yoga to help improve blood circulation and prevent numbness and tingling sensations. Even though I do my best to counteract it, sometime it just hits and your hands are tingling and number before you can do anything about it. On a recent trip we ended up having to take a pretty lengthy midday break because I had lost a glove and done a single run with no gloves; that was a big mistake. I was miserable and in pain while I worked the blood back into my hands swollen hands in the lodge. I won't be doing that again!

Even in photos, most especially our initial engagement photos, I'll notice that my hands are swollen and red - especially if we've been outside. We were snowshoeing in Mammoth when Alex proposed, so I had my gloves off in the snow for photos and kisses. My hands were getting super red and swollen - so much so that I thought the ring was going to be a tight fit, when it actually ended up being about a size and a half too big when my fingers went back to their normal size that night. I still look at those pictures and notice how red and puffy my fingers looked. Since I have Primary Reynauds, things like that are something I'll need to deal with and be aware of. I'll stay warm and eat healthily to combat any triggers within my control. And maybe keep my creepy hands out of photos. 

It is suggested that a diet rich in Omega-3's, Vitamin B, and Calcium + Magnesium to your diet can help to increase circulatory blood flow and reduce stress within the body, thus counteracting some of the effects of Reynauds. I also read an interesting article about how a raw food diet could help in several ways; first, that eating raw foods forces the body to work harder to break them down, thus increasing internal heat and blood flow within the body. Second, that certain raw foods are loaded with beneficial vitamins and minerals and have the ability to improve oxygenation and overall circulation within the body. While I agree that this is probably true, and I'm all for working more raw foods into my diet, I also love cooked foods and am definitely not afflicted badly enough to need to go completely raw. Otherwise, all I can do is stay warm and keep eating well and working out! As I get older it will probably get a bit worse, but I just hope it doesn't work it's way to my nose too - my fingers, toes, and ears are PLENTY, thanks! 😝 Do you have Reynauds Primary or Secondary? How do you deal with it? Are there triggers for you I didn't list here? Let me know! ​