With the Pacific NW winters come the damp, cold rains and anyone with lupus (or other autoimmune diseases such as Scleroderma, Fibromyalgia or Rheumatoid Arthritis) knows how aggravating those weather conditions can be for us. Especially Raynaud’s (Disease or Phenomenon) which might be one of the crossover conditions that occur with lupus.
According to NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases):
”Raynaud’s phenomenon is a condition that affects the blood vessels in the extremities—generally, the fingers and toes. It is characterized by episodic attacks, called vasospastic attacks, in which the blood vessels in the digits (fingers and toes) constrict (narrow), usually in response to cold temperatures and/or emotional stress. When this condition occurs on its own, it is called primary Raynaud’s phenomenon.
When it occurs with another condition such as scleroderma or lupus, it is called secondary Raynaud’s phenomenon.”
The attacks are just another way in which our hyper-drive bodily systems react to something and, in the case of Raynauds, our bodies are overly responding to cold. There are about three different phases of the attacks that are identified by the color of the digits (fingers or toes). Although I didn’t notice the blueish color (Phase 2) in my fingers until about five years ago, I most commonly get the whiteish tinge (Phase 1) along with numbness eventually followed by the red (Phase 3) , hot and painful ‘return’ of the blood supply. (You can find some illustrations of these phases at the MedlinePlus website)
Shortly after my lupus diagnosis, I had my first episode while driving home one damp night from a night class. All it took was me holding the cold steering wheel and I noticed a couple of my fingers were white and numb. I don’t mind saying that, when it happend, I panicked. Usually, it happens when I’m walking outside holding the umbrella during a cold rain. Add onto the fact that I’m usually in a hurry, already chilled and stressing out about whatever has me out there in the first place – and bingo, there it comes.
If you have Raynauds or are concerned about dealing with it, there is one thing I can recommend to you right away: be calm. I can guarantee that if you relax, the attack will resolve much more quickly,… which is true with any of our lupus-related symptoms.
Our bodies are already in hyper-mode, so it only makes sense that we treat ourselves with calmness and self-care to help us counteract our systems toward balance.
If you want to know what an attack will feel like, imagine going outside in the snow and getting your hands good and chilled. Then, come inside and, as your hands thaw, the pain you feel when the blood returns is just like a Raynauds attack. The colors of your fingers and toes are opposite, however, with the initial numbness associated with a white or blue tint rather that the immediate redness you find when you’ve been in the snow too long.
So, here are some tips to minimize an attack (mainly for mild or those new to Raynuads):
- Ensure that your body is kept warm – although the fingers and toes are where the Raynauds presents itself, it’s caused by you being cold and begins with the chill ‘in your bones’.
- Wear mittens (gloves separate your fingers) and be sure that your shoes aren’t too tight allowing for some room to surround your hands and feet with warmer air.
- Invest into the small hand-warming packets that you can find in a sporting goods or drug store. I get mine (Little Hotties, of course) at REI for $8.95 for a box of ten. They also have Adhesive Toe warmers, which I’ve never tried – I just wear wool socks. These packets take up to twenty minutes to get warm, don’t get as warm as some other brands and last about 5-7 hours. [Note: Be sure to monitor your progress, as these packets may get too warm and burning the skin can occur]
- Don’t smoke – it adds to the trouble and isn’t good for you anyway. Also, limit the alcohol if outside in the cold, because it causes your blood to pool away from your extremities and into your core.
- Minimize your stress levels - It also constricts your blood flow and adding cold anything is going to really set the attack into motion.
- Exercise to keep your blood flowing – even if it’s raising your arms and flexing your muscles. Moving a little will go a long way.
- Avoid refrigerator compartments (especially at the grocery stores) until you have to reach in. You may even have an attack being in a cold store if it’s especially warm outside during the summer.
Here are some suggestions for what to do when you notice an attack coming on (again, mainly for mild cases or for those new to Raynauds):
- Take a deep breath and consciously relax - You need to stop the ‘spasm’ by relaxing your muscles – everywhere and not just in your hands and feet. Start with your jaw and shoulders…
- Remove yourself from the cold by stepping into the store or buying a cup of coffee to hold (and drink – caffeine opens up the blood vessels, too).
- If possible, place your hands under some warm water, just as you would to dethaw after being in the snow. This will only be effective, however, if you are still getting yourself in a relaxed state. Stressing while running that water isn’t going to help much. Or,
- As weird as this sounds, place them against your skin in a warm place (small of your back, in the waistband of your pants, in your arm pit) to gain that body heat. You’ll be surprised (after the initial shock of the cold) how quickly those fingers begin to warm up.
- Finally, and a good thing to do once you get somewhere warm to relax at the start, is biofeedback. There are a lot of skeptics, but this tool has been a life-saver for me. It takes practice and visualizing, although not usually my cup of tea, and really does gives you an actual ‘result’ you can see. My quickie, layman’s course on biofeedback is:
When you first notice your fingers numbing or turning white, take a look at your hand and target a finger of choice (mine is almost always just the ‘bird’ finger – no surprise there). What you want to do is find a point to focus on so you can watch your progress.
Secondly, as you continue to calm down, concentrate on that finger and think about letting the ‘blood’ gates open. I actually tell myself “okay, let it flow”. Focus on looking at the finger, imagining the blood moving through it and try to feel the warmth in that area. What you’re doing is ‘guiding’ your focus towards the physical part of you and away from the emotional or thinking part of you where your stress is coming from.
When you begin to feel and see the whiteness disappear, keep going – don’t start thinking its done because that stress and panic will come back if you haven’t taken enough time to switch it off.
Obviously, there are more severe conditions that do require medication and can lead to serious problems. The hope is to keep the condition managed and it takes swift, yet calm, action. If you suspect you have Raynauds, or have had some episodes, let your doctor know since it could be coming on due to particular medications known to affect vascular processes. I haven’t received an actual diagnosis, because I am able to manage it and have very few occurances anymore now that I’ve figured out the biofeedback. Experiment and trust yourself – no matter what technique or medication you use, it will all depend greatly on your ablity to relax.
Be kind to yourself – and keep warm. We have about six months of this weather ahead of us…
