Here in Southern Texas, we almost never get snow. Our winter is cold rain mixed with wind and dampness. A typical day is 45 to 50 degrees or so; it can even get down into the 30s when it is really cold. But that’s just cold enough to aggravate my fibromyalgia and symptoms from my other chronic illnesses.
Cold rain and erratic temperature swings spell fatigue, swollen joints, more intense pain spikes, and even worse episodes of brain fog. It is almost like the version of my healthy body — which is already far from a typical definition of healthy — goes into a kind of hibernation every year for about four to six months starting in November.
Winter Is My Nemesis
During this period, I am constantly cold. Some portion of my fingers or my toes (or both) turn ghostly white because the blood withdraws from them due to Raynaud’s syndrome. I am stiff and sore much longer than normal. I wake up like the Tin Man from the Wizard of Oz. My joints crack and squeak and limit my movement for a while. Even if the biologic medication I take for my rheumatoid arthritis or spondyloarthritis really helps me during the rest of the year, I still feel like this during the winter.
Then there is the fatigue — oh, the fatigue. This symptom is wrapped up tightly with pain, flares, weather, and not sleeping. I struggle more with painsomnia at night. Even if I do manage to get into a rhythm and get six hours of sleep, it feels like I got four at most. I struggle all day as though I haven’t slept.
My body is heavy and worn out. My muscles feel like they’re strapped with weights, and I’ve been thrown back into the river just as I am trying to get out of the water.
The flares increase. The fibro flares, rheumatoid arthritis flares, spondyloarthritis flares. They all bounce off each other like ping pong balls.
On top of all this, going outside regularly in the winter is more difficult. Being cooped up tends to increase my anxiety and depression. It is a more difficult time of year for my mental health, and I struggle more with nighttime anxiety and panic attacks related to my pain flares.
But I have been at this a little more than 10 years now. I have a few tricks up my sleeve for coping.
Over the years I have gathered tips from other patients, advice from good doctors, techniques from my own trial and error, information from CreakyJoints, medical conferences, and more.
Here is what gets me and my beleaguered body through the winter.
Start my day with stretching
I try to stretch for a few minutes after I wake up. It helps me work out the cracking joints. I also stretch at least once during the day and at night before bed if needed. It helps get my joints lubricated and moving and supports the muscles around my joints.
Create reminders on my phone
I use my phone to create reminders for everything. If there’s a task I need to do at night, I set an alarm for it in my phone on my calendar at a time I think I can get it done. If not, I will forget about it. I put all doctor visits, meetings, and even phone calls in my phone’s calendar. I have learned that if I do not do this, I will not remember or follow up.
Another trick: If I don’t feel well, I can easily move the reminder for a task to another time or day. It makes keeping track of tasks more flexible than a written reminder (and it’s easier on my aching hands).
Record meetings
If my brain fog is really bad and I cannot reschedule a meeting, I will either take notes or record the conversation (with permission) on my phone so I can listen to it later if I need to jog my memory. Or if it is available to me, I try to record on Zoom or Teams when on conference calls. In those instances, I may also lean on someone in the meeting that I can trust to share notes or provide a summary. It helps to have an ally who knows about my health issues and is willing to help.
Wear layers, layers, and more layers
I rely on layers of clothing to stay warm. Layers trap warm air in between the garments, which keeps you warmer than wearing one thick garment. This also allows me to peel off layers if I happen to go into a location that is really warm. I might wear a shirt, a sweatshirt, and a jacket to go out in the cold. This helps keep out the damp and cold.
Raynaud’s, which is a condition that causes poor circulation, pulls blood away from fingers, toes and sometimes nose. It is important to keep those appendages warm. If they do get cold, I must warm them up as quickly as possible because of the lack of blood flow. I focus on keeping my midsection as warm as possible — wearing layers helps with this. If my core is warm, it helps trick my body into thinking it is okay to warm up my appendages faster if they get cold. I focus extra layers on my chest, trunk, and hips.
Stay warm with gloves
On top of this, I love to wear fingerless gloves, especially when I’m at my computer working. I keep a pair of compression gloves at my desk and tend to wear them year-round. (In the summertime the air conditioning can make my fingers cold.) The compression also help with circulation in my hands and fingers. I try to have different kinds of gloves for different needs, moods, and temperatures. I have fabric, knitted, and am making some crocheted gloves for the winter that will be a bit warmer than just the compression gloves themselves. If necessary, I also run warm water over my fingers and/or toes to warm them up. My doctor has said I am not supposed to run hot water because it will be too much of a shock to my system.
Do exercise that’s safe and soothing for my body
I need exercise every day because of my fibro. Movement helps lower pain levels and strengthens my joints. But some days the flares are so bad that I just can’t, so I honor my body and listen to that. I know I cannot move or exercise as much as I can when it is warmer outside. But I still walk and try to get outside as I am able. I will do chair yoga or modified yoga inside if I cannot get outside because of the weather. Sometimes cleaning is the most activity I can manage, but if that makes me sweat or gets my joints moving, I accept that. As long as I keep moving daily.
Watch my mental health
I know my mental health will automatically be more difficult in the winter. Being stuck inside, not being in nature, and not seeing the sun for days really affects me. I open the shades or the curtains daily to let light in. I try to get outside, even if that means just stepping onto the patio for a little bit. Walking helps — if it is safe (not slick or icy in any way).
I reach out to friends because I know I need the support more than usual. I also try to lean into my creative outlets because that definitely helps. I crochet and sketch — even if it is just for a few minutes, it helps. And I discuss all of my issues with my therapist.
Accept the moment
I have come to accept that this is a cycle for me. No matter the medication, the techniques I try, or the weather, the pattern is the same. I struggle more at this time of year.
So, I give myself more compassion. I understand I will need more time to do things. I say no to commitments and make more time for rest. I make space for my body to be what it is. I cannot change it. And I cannot fight it. I work with the tide of what it needs.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
