Today’s weather was warm but not overly-warm, at least by most peoples’ standards. Unfortunately, my legs have very different standards, due to CRPS/RSD. The only 10-degree temperature range at which I’m comfortable is between 68 and 78 degrees Fahrenheit. Outside of that tiny window of wiggle room, I’m miserable in both directions.
Temperatures lower than 68 degrees cause my leg to become a dark blue or even purple or gray in color. The swelling may increase, but not necessarily. Burning pain is greatly increased, however, as the blood vessels constrict in my legs, drawing the blood up toward my heart and viscera. If I were in the arctic tundra and about to freeze to death, I suppose I’d understand this bodily response which can be life-saving. When it’s 63 degrees and I’m experiencing the same level of vasoconstriction as an arctic wanderer in sub-zero temperatures, however, the result can be intense frustration. My legs become cyanotic because they lack oxygen and the tissues and nerves scream in unrest. Then, my legs get COLD. Not just a little cold, but very deeply cold, and if you were to touch my legs (which you wouldn’t do unless you had a death wish), they would be death-cold. Sometimes they even feel colder than the air in the room around me.
During the winter, this is almost always the case. Since high school I’ve wondered why I am so painfully sensitive to cold. I remember being in the marching band and when other folks were just really cold, I had tears of unbearable pain rolling down my face. Sometimes I couldn’t hide the fact that I was crying and eventually I begged to go inside to warm up; I’d sit in a band parent’s car with the heat on full blast to try to warm my body, especially my hands and legs.
In more recent years, I’ve spent lots of money on winter survival. I live under the heating blanket on my bed and often retreat there during winter days even when I’ve not left the house because the bloodflow has still left my legs and arms and getting warm is the only way to make it return that I’ve found. At night, I lay in bed for up to three hours before my legs and hands will warm up to the point where I can get comfortable enough to sleep…and that’s three hours laying in bed with the electric blanket cranked up on High and a total of three blankets on top of me including a down filled throw. I also drop dough on those HotHands hand warmers without second guessing. The year I got a big bag of those in my stocking I thought I’d hit the lottery; you’ve never seen someone so excited about getting hand warmers. 🙂 Whenever I leave the house, if the temp is 65 degrees or below, I wear ugly bootie leg warmers or at least a blanket over my legs to hold in as much heat as possible. My bootie leg warmers wrap around my shoes and clothing. I am so grateful for these booties because even though they don’t stop the pain or the vasoconstriction, they do help keep a bit more heat in and I’ll take all I can get. Once my legs get cold even once during the day, I cannot get the circulation back myself.
During certain times of the year I’ll get cold inside and outside, but if the sun is shining brightly I’ll find that inside my car is the warmest place to which I can retreat, so I’ll go out to my car and quickly get inside then sit in the sun to warm myself like a lizard tanning on a rock. I really do feel like an amphibian. Once I’m warmed through, which can take 30 minutes to an hour, I get out of my car and go about my day. Neighbors often wonder why I’m resting in my car in the parking lot, and they may come to see if I’m okay, but I won’t roll the windows down to chat with them because I don’t want to lose my precious heat inside the car!
When I work my part-time job at my desk sitting in my wheelchair for 4.5 hours each day, it becomes very difficult to stay warm so I dress warmly and then I wrap my body in a blanket and sit in my chair, legs covered as much as possible to preserve precious circulation. I’m in my heated apartment with the temperature around 67 degrees, and I’ve got a hand warmer resting between my computer mouse and my hand because my fingers cramp up if they get too cold and then I cannot type. It’s a good thing I work from home where nobody can see me because I must look really odd all bundled up like that! The colder I get, the achier I get with that deep bone ache. This is what begins happening at 67 degrees! Any temperature below this is even more uncomfortable.
Temperatures above 78 cause my leg to swell and often become red, though today it turned both red and blue as it became more swollen (at 81 degrees). Sometimes I can literally WATCH it swell. As it does, my pain swells too and again, I burn. Even a little bit of swelling is greatly magnified when you have CRPS – it feels like my legs are going to suddenly explode. (In fact just last week I asked one of my pregnant friends if her very swollen feet bothered her. She said it was uncomfortable and she was keeping her legs up during the day, but clearly she could still walk on her very puffy feet, which is something I couldn’t do if my legs were as swollen as hers were. In fact, if my legs swelled as much as hers did, I think I’d be in the ER begging for pain medication. With CRPS, the body feels things differently.) My orthotist/prosthetist asked why my leg was so much more swollen today and I told him it was because it was 81 degrees outside and my leg got too hot. “Wow!” he said.
I do not sweat much even when I get very hot, and my legs sweat even less so it’s hard to cool off. I use a dorky little necklace fan to blow on my face when I’m desperate to cool down. I can’t wear shoes in the summer; I have to wear sandals to let the heat out from my legs. Lately I’ve been trying to find ways to keep my legs cool, but this seems even more difficult than keeping them warm in the winter.
I’m thinking about carrying around a spray bottle with me because I can spray some water on my hand, then gently pat it on my leg. I’ve done this with a water bottle before. This only works well if I’m not wearing my compression stockings. Wet compression stockings plus a breeze or wind becomes unspeakably painful, however, and therefore I’m dreadfully afraid of getting caught in a rain storm while I’m outside of my house, especially if I’m out of the house wearing sandals – there’s no protection from the rain! Rain itself is often quite cold and therefore it hurts, plus the tapping of the rain on my skin hurts due to allodynia. The water, if it’s within my a comfortable temperature, isn’t so bad itself, but any movement of air around my legs when they’re wet is problematic.
Even though everything in me wants to rip my compression stockings off when I get hot, I’ve learned this is often the worst thing I can do because it allows even more swelling to enter my legs and get trapped there, up to my knees. By the time I get pitting edema, there’s definitely no hope of getting rid of it anytime soon, and pitting edema can settle in within 3-4 hours if it’s hot and I’m not wearing my stockings. I haven’t worked out a system yet that will allow me to cool off my legs while wearing the compression stockings, but I’m going to keep thinking about it. There’s got to be a way.
Making it from my apartment to my car and then getting the car either cooled down or heated up (while also breaking down my wheelchair and getting it inside) is very difficult. If I stay outside too long when the temperature isn’t between 68 and 78 degrees, my legs respond most painfully, and it only takes 10 minutes or less for these changes to set in. Once they do, I may have increased symptoms for hours, sometimes for more than a full day, even if I can miraculously get my leg back to the temperature it should be. Worse, I’m learning that if I stay out too long in uncomfortable temperatures, it can trigger a bad flare that may last weeks, and that’s scary.
I really wish I had one of those remote car starters so I could start the car from my apartment and then let it heat up or cool down and I’d just have to huff it from my apartment to the car to seek temperature sanctuary from the elements. I use window shades in the windshield to try to keep the direct sun from warming my car too much. This is one thing I do think it might be worth spending money to invest in – a remote car starter sounds delicious to me 85% of the days out of the year. If I could just keep my body from reacting between my apartment and my car, I might be able to arrive at my destinations with more energy and less pain, and also not to dread the drive back home so badly. Maybe I will actually look into that this week, as I have a friend who knows a few things about cars and may be able to help me find a good price on such a remote car starter thingy…I sure hope they aren’t too $$$$.
Unfortunately, though cooler air on my legs can occasionally be relieving, I CANNOT tolerate the air conditioner in the car blowing on my legs. I haven’t been able to tolerate that for years. Gratefully, I CAN tolerate the heat warming my legs directly in the winter, and that’s a treat. So I just blast the AC from the upper vents and keep the lower vents blocked (sorry passengers). On the rare occasion that I forget to block the lower vents, I experience a very rude awakening with a shot of cold air on my legs and I remember for another few months not to do that again.
Whether I get too hot or too cold, it impacts my dystonia – my ability to control my leg’s movements and postures. With dystonia acting up, my muscles get VERY TIGHT and that feels like a charlie horse on steroids. My toes tend to curl down and I cannot straighten them, the bottom of my foot is hard, and my foot points down and turns in a little bit. The dystonia makes walking much more difficult, even though I take baclofen (a muscle relaxer) in high doses, and it great affects my balance and coordination, making it much more likely that I’ll trip or fall. I also get tremors, and these are made worse by temperatures outside of my comfort zone too. The tremors wake me up at night and annoy me during the day.
Taking a shower can be taken for granted. Showers are exhausting. Some days I can tolerate spraying my legs with the showerhead, other times I can’t even think about it without feeling nauseous. Most days fall into this later category. I’m still trying to figure out my perfect water temp for showers. I’d say a shower takes me 10-15 minutes, but that’s long enough for things to go very wrong with my legs. Many folks who have CRPS have noted extreme skin color changes, swelling, and an increase in other symptoms during and following a shower. There is no such thing as a relaxing shower anymore. If I get the water just a bit too hot or too cold, I’m in trouble. I need to take a digital thermometer into the shower with me so that I can test the water from the showerhead so I can figure out for sure what is the best temperature. But then there’s the issue of getting out of the shower. The tiles on my bathroom floor are cold and the surface can feel like a burning hot block of dry ice. Ironic, I know. But true. So then I’m left trying to dance around the bathroom with my wheelchair and/or balancing on the sink to get my legs covered with socks again before they touch the tiles or get wet.
Grocery shopping can be very difficult due to temperatures. It’s not just getting in and out of the car with those temp changes but also dealing with temp fluctuations within a store. In the grocery stores, aisles with refrigeration (especially those open-air refrigerators without doors) tend to be significantly colder than non-refrigerated aisles. I often divide my trip so that I may go to a refrigerated aisle first thing, then leave that aisle to go to a warmer one next and after a little more shopping I may return to the refrigerated aisles to finish the rest of my shopping there, dividing my cold time into two smaller blocks. Getting food out of the closed-door freezers is very painful – that blast of cold air is intense and if I can’t reach what I’m digging through the freezer for in the first place (I’ve got to really NEED that item for me to go digging in there to begin with), the pain sets in quickly. It’s such a shock to my system that I sometimes stagger and nearly black out. I no longer feel guilty asking for help in getting foods out of the freezers even when I can reach it on my own.
Cooking can be difficult for the same reason – going into my fridge or freezer to get foods out. Touching cold foods with my hands is very painful. I cannot easily handle raw meat either. I often run my hands under warm water while working in the kitchen. I’m lucky that my hands seem to regain the retain the heat much more easily than my legs, especially when I can warm them under the water. But there’s also opening the door to the hot oven and the clothes dryer. I tolerate this heat better in the winter, but during the summer it’s enough to trigger more symptoms.
These are just a few examples of the many temperature-related problems I face daily, things most people don’t think about or have to avoid.
Where I live, we have had two weeks of weather nearly within my comfort zone and for that I’ve been happy. In the last few weeks, I’ve narrowed down my happy zone temperatures and I’ve come to realize that my body is only at rest within a 10-degree range and SUMMER IS COMING. I’ve had the gift of pain levels around 4, occasionally 3, during the last two weeks (some days higher but let’s look on the bright side). I’m not sure, however, how much longer this happy zone temperature weather will last. I’m trying not to worry away my “feel better days”. Each day I’ve been outside when it’s above 78 has brought additional suffering. If my leg is going to swell and become so painful each time I leave my house this summer, I might as well hole myself in and seal the door with duct tape during both summer and winter.
I’d like to be positive and say this could get better, but this temperature sensitivity problem has only gotten worse for the last 10 years. The only time I had relief was with a nerve block, and that relief lasted only a few hours. At least I got one good shower! 😀
After writing this, I decided to check in with my favorite support group about their experiences with temperature hypersensitivity. For better or worse, I’m not alone. Those who responded said their comfort zone temps were between 63 and 75 degrees Fahrenheit. They too can’t seem to get warmed up after they get cold, but most appreciate the comfort of the warm water therapy pool and one person said if they had a mobile personal therapy pool attached to their leg, they might be able to function more normally! I concur! Showers were generally tough for temperature’s sake, touch aside. And most everyone mentioned humid weather and rain being a major pain instigator.
My Mom has RSD/CRPS, and she seems to be more sensitive to humidity while I’m more sensitive to temperature. In my case, humidity makes me ache deeply (more like the fibromyalgia and arthritis type pains) but I’m not sure it increases the burning pain a whole lot.
When I have a nerve block that makes it easier for me to appropriately discriminate temperatures and not feel so much burning and symptoms from temps outside of my 10 degree range, that’s a big thing! I’d say my most top three most bothersome symptoms are 1) burning and stabbing pains, 2) temperature hypersensitivity, and 3) allodynia, or hypersensitivity to touch. So if we could knock out number 2, I’d be quite happy about that. In the meantime, here’s hoping that I can continue to cope and have more lower pain days ahead regardless of temperature.