It’s starting to feel more like pre-summer here, and with the heat comes an added challenge in managing my CRPS.

After being out in hot weather, the safest way for me to cool down is to warm up.
(yes, you read that right)

CRPS & Temperature Regulation

One of the many problematic ways CRPS affects you is how it interferes with your nervous system’s ability to correctly identify temperature, correctly regulate your own body temperature, and correctly relay all this information back to other systems that kick on when your body needs protecting and/or is in distress.
With regards to identifying temperature, I have trouble telling:

  • ​If something I touch is hot or cold
  • If water is too hot or just right for showers, washing dishes, or washing hands
  • If a room or outdoor area is warm, too hot, or the right temperature. I might feel the warmth but not be able to tell if it’s real or if I’m having a hot flare where the world feels super hot. Alternatively, I might feel extremely cold, even though the room temp is 70 or 71 degree F. If I’m outside and it’s humid, an 80F evening can feel like 60F.
  • The difference when I go from someplace warm to cold or cold to warm.
  • The warmth when I go outside into a hot day. I’ve walked out with hoodies on and not realized it until I felt incredibly weird because a CRPS heat stress episode was starting.

Typically, I respond more dramatically to cold than I do hot. Cold rooms, drinks, water on me, etc. I can’t go swimming anymore because regular pool temp causes my body to react as if I’ve jumped into an icy pond. My flare kit on the go includes a blanket, hoodie, hand warmers, fingerless gloves, and can/bottle koozies, no matter the season. And, helping with cold flares is a task my SD does.

In the summer, though, things get extra weird, in 3 primary ways.

  1. If I’ve been out in the heat, exercising or existing, and am sweating, it’s vital that I cool down very slowly. If this means eating cucumber slices instead of drinking water immediately, that’s what I do. In addition to this, I have to cool down while also wearing a hoodie, being under a blanket, and possibly drinking something warm. My body, as part of the CRPS, reads my sweating as my body being enveloped in cold and tries to drop my body temp way too fast. If I don’t cool down properly, or I’m in the heat too long, I go into low level shock during the cool down process. And, to be clear, by “be in the heat too long”, that becomes a possibility for me, with the CRPS, starting at 75F and 45 minutes. It changes day to day what the threshold for trouble is.
  2. If it’s hot and humid, I don’t sweat at all. I reach a certain point where I’m sweating and feeling the warmth of outside, and then I don’t feel any temperatures. When I don’t feel anything, I know I need to start cooling down safely as soon as possible.
  3. If I’m wearing sunscreen inside, it worsens my chilled feeling. I perceive the presence of the sunscreen as feeling cold. When a breeze passes over me, I get chills. This can also happen outside, and sometimes I notice areas that have sunscreen don’t sweat when they should be. And so, then, too, sweaty areas and sunscreen areas feel like I’m trapped in a thin layer of wet, coldness.

Healthy people get heat stress and heat exhaustion from 30 minutes in extreme heat, or long periods of time in moderate heat, if they aren’t properly conditioned to it.

  • In the 80Fs, I may or may not get a CRPS version of it within 45 minutes.
  • In the 90Fs, I start feeling weird in 30 minutes.
  • Over 100F, I start feeling exceptionally weird/off in less than 5 minutes.

What It Feels Like/How I Know

  • My hands swell & look mottled in color
  • I feel lightheaded and dizzy
  • I feel chills washing over me like ocean waves pulling at me
  • I may or may not stop feeling the heat of the day at all
  • I may or may not be sweating normally
  • If I am sweating, it feels like cold water is being poured on me
  • I start having a harder time thinking clearly or answering questions promptly
  • I struggle with my balance more
  • My breathing gets more shallow
  • It feels like my life is being drained out of me; it’s hard to hold things or use my limbs
  • I feel prickly sensations in my hands
  • I get sleepy

How I Manage It

To prevent problems:

  • I walk in cooler times of the day.
  • I make an effort to heat condition myself as spring ramps up.
  • When I get back from a walk, I change my clothes and get under a blanket
  • I either drink water slowly or eat something with a high-water content like cucumbers or fruit
  • I listen to my body and try to respond before I reach my limit
  • I wear lightweight hoodies on town days for going from cold truck to hot outside to cold inside store to create some stability
  • If we know it’s going to be over 100, we greatly limit my time outside, even if it means having someone else come over to take my service dog out for potty breaks
  • If I have to be outside, I try to stay in the shade, alternate water & Gatorade, don’t take meds, focus on what needs to get done and how to best take care of myself
  • If we’re going to an evening event in the hot, humid summer, we take a hoodie, a blanket, and buy a caffeinated drink for me. Sometimes, we have to leave early.

If low-level shock/a deep cold flare happens:

  • I change clothes. If I can’t, I get under a blanket and try to slow down the rapid cooling process with the blanket.
  • I drink hot coffee to trigger an adrenaline flare, which will break me out of feeling shocky. It doesn’t always work, and often I need a combo of coffee + blankets + hoodie + dog + time. Sometimes it takes hours.
  • I have my service dog lay on me or near me to share his body warmth & feel the pressure of him. This also works to cause a pain flare, which will raise my adrenaline, also. If my pain is getting worse, it’s actually a sign I’m out of danger.
  • I slowly hydrate with fruits and veggies.

Is This Something a SD Can Help?

Yes and no.

Service dogs aren’t going to be able to fix our bodies’ ability to regulate or recognize temperature. They can be trained in tasks to help you in the moment, though, and after. These may include:

  • Laying on you to stabilize your temp (Austin does this)
  • Bringing you a blanket (Austin does this)
  • Drawing up or pulling off a blanket (Austin does this)
  • Bringing you a drink
  • Guiding you to someplace to sit & rest (Austin does this)
  • Helping you steady yourself through dizziness, balance issues, and tremors (Austin does this)
  • Alert when a timer goes off to remind you it’s time to stop and go inside
  • Brace to help you after you’ve normalized – shock tends to suck the energy right out of me, and I often feel an extra full body flare after a deep cold flare, making it hard to stand up and move around safely. (Austin does this)
  • Get a person to help you (Austin does this)

I am not a doctor or a medical professional. I don’t have access to doctors who are well-versed in CRPS, so we haven’t been able to definitively confirm with a doctor what is happening in me and if how we respond is the exact right way, but it works. I’m alive, I know how to handle myself in heat and after, and what we’re doing continues to be helpful.

I’ve been living with CRPS for 10+ years. In the last few years, my husband & I have gotten much more vigilant about trying to understand what triggers flares, and understanding similar lines of logic on how healthy bodies respond to heat, stress, etc, to help us try to understand how to help me be okay. Like, reading up on what being in a cold room does to a healthy body or what heat stress does to a healthy body, to better understand how my nervous system is supposed to be working, and seeing the info through the lens of “CRPS messes with what is supposed to be going on & takes it to the extremes.”

Your experience with CRPS may be completely different. This is one aspect of mine.

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