My Struggle With AS and Heat Intolerance

By Steff Di Pardo

2 min read

I used to absolutely love summer. I would tan, go out for day trips a lot, and spend days on the beach. Summer is still my favorite season, but I’ve found more recently that I’ve been having to enjoy it more from my air-conditioned house.

I knew something was off when I was traveling

I was traveling in Lisbon last year when I noticed something. I would get overwhelmed very quickly by the heat of the day, and it would get worse with any activity I did. Traveling with my brother and my best friend, and neither of them would break a sweat while I was drenched doing the same things they did.

I wanted to spend the entire day at the beach, and I pushed everyone to get up early because I was so excited. As soon as we got there and picked our spot for the day, I knew something was wrong.

At the beach, I couldn't regulate my body temperature

I felt as if I was baking in the sun. It became hard to breathe and I quickly felt like I was melting. I needed cover but didn’t have an umbrella or even a hat. Panic set in as I ran to the water to try and cool off. Of course, the water was absolutely freezing, which was a different kind of overstimulation.

Neither the beach nor the ocean was regulating my body temperature. I didn’t know what to do. My brother and friend were getting frustrated with me because I kept saying it was too hot and couldn’t handle it. I wanted to come here, this was my idea.

So how could this be going so wrong?

I ended up needing to go stand by the beach bar in the shade of the building while they took a dip in the ocean and dried off. I apologized and told them I didn’t know what was going on, and they accepted my apology while being confused.

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Even after coming home, my heat intolerance with AS stayed

After the vacation, I thought maybe this was just something that happened in the heat of Portugal, but it turns out, it followed me home.

Every time it’s humid now, I get overwhelmed. I break a sweat almost instantly and within 5 minutes have to seek shade or air conditioning.

I don't have any explanation for this

I’ve never gotten an explanation for this. When I talked to my rheumatologist not long ago, he stated he was unsure of why this happens but that it could be because of a number of medications I’m on.

This is derailing my favorite season, and it's frustrating

It’s definitely frustrating that my favorite season makes me feel like I’m burning up and melting. I still haven’t fully accepted that I can’t tan for long or be out in the sun without becoming overwhelmed and needing shade or lots of water.

I miss enjoying my favorite season. I plan to ask my family doctor about this heat intolerance, and I'm determined to find out why this happens to so many of us.

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AmelieMember
This has always happened with me, but I never understood it was part of my disease until this year after reading so many suffering with the same on forum after forum. The thing that's frustrating is when, as the writer said, there's no relief even in the air conditioning sometimes. I used to feel really good in the summer, and now when it's hot and humid I'm stuck inside. It's really a buzz kill since I love gardening, but it's been too hot for me to do much this year. I don't take any meds other than ibuprofen because I'm still not officially diagnosed, despite having nearly all the symptoms and a family history. Swimming has really been a great thing for me - it really helps loosen up my stiff joints and it's a great way to manage the heat too. Win-win. One of the few I've experienced with this disease.
CommunityMember6e17ffMember
I have the same intolerance of heat. It started as a teenager and I’m now 77 and have learned to not go out if it is above 80 without some sort of cooling items with me. I literally don’t have a way to cool off without having to seek air conditioning and lots of cool water. No mater how hydrated I am I will pass out when I get hot! Even just a mild walk can send me into panic for a cooling off very quickly. No matter what is going on, I have to stay in tune with my body temperature or I’m down on the ground or the floor.
kizmazzMember
<inline-mention username="Ldwh40" user-id="4137405"/> - In my case anyway as soon as I get cold the pain isn’t far behind. My nerves are messed up tells me my feet are wet and sloshing in socks. lol one of the best ones I was at my pain med Doc who I’ve see for 15 years, told him my nerves say my butt cheeks are wet we both were laughing because they weren’t. It can be 95 degrees outside and I’m inside my feet get very cold and I start sliding on floor which irritates my wife, oh well. lol 🤷‍♂️ in Winter if cold outside & im in bed have to wrap towels or small blanket around feet to get them warm, they get so cold I’m miserable. Get yourself a throw electric blanket and wrap up you will soon be warmer, I have one in bedroom and family room. Give it a try my feet are getting very cold and it’s at least 95 outside. Ron
Latoya.JunielCommunity Admin
<inline-mention username="kizmazz" user-id="2395500"/> I totally get that. Hot showers can be really painful with AS. Swimming early sounds like the perfect alternative, plus it’s a great low-impact way to stay active. How often do you get to swim? -Latoya (Team Member)
MarshmallowChickenCatMember
I have had heat intolerance for the last 12 years. I always attributed it to taking lithium as that can be a side effect, but like my AxSpA symptoms the intolerance gets worse every year. I already drink 400oz of water + other liquids daily; but during the warm months, and especially if I’m somewhere humid, I add electrolytes to at least 200oz. My favorite is a brand called Ionic Lytes. It’s a liquid that is flavorless and can be added to any other liquid. I went to Bali last year and it took a lot of thought and care while packing. I made sure that all of my clothing was lightweight breathable natural fabrics. I brought a very wide brim sun hat, and an umbrella for shade. My travel companion was very understanding and we did activities together in the early morning or evening hours after the heat of the day wore off. During the heat of the day we often chose to do separate activities so that I could mitigate my symptoms without disturbing her plans. I’ve also found FrogTogg brand cooling towels and battery operated fans, especially the ones you can wear around your neck, are really helpful when trying to regulate body temp outside.