What Happened to my Heat Tolerance?

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.

Feeling the hot weather

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.

The day we went to the beach is when I really noticed something was wrong. I was the one that 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.

What I experienced

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 I 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 over-stimulation.

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 I 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.

It never went away

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 very quickly. I break a sweat almost instantly and within 5 minutes have to be in either the shade or air conditioning. Sometimes if it’s really humid, not even the AC helps.

I have no explanation for it

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, and that it could be any number of my medications that I’m on.

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’ve yet to ask my family doctor about this heat problem, but I’m determined to find out why this happens to me and many others. I miss enjoying my favorite season.

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CommunityMember23698e Member
I live in southern California. We had a straight weeks of temperatures near over 100 to 110°. I thought I was just being a weenie. I got so I couldn't even stand open the door. I've always been a person who burns easily but enjoyed the breeze and the shade and the summertime. I hate this summer has just decimated me. I am in the house it's like I have no brain functionality to even be motivated. I have read a lot Us I found your article thank you for sharing. It was very helpful.
1. Doreen H Community Admin
 <inline-mention username="CommunityMember23698e" user-id="6684175"/>, I'm glad the article resonated with you, and I truly hope you get a break in the weather out there real soon! Always know you are not alone, this community understands and is here for you. My best, Doreen (Team Member)
CommunityMember86e8c3 Member
Our disease is inflammatory and since we are already inflamed doesn't it make sense, we would experience more intolerance to heat?
1. Rebecca C Moderator & Contributor
 <inline-mention username="CommunityMember86e8c3" user-id="8851939"/> Good question. Thanks for sharing. You would think it is a factor in experiencing more intolerance to heat. Heat intolerance has been noted to increase inflammation possibly making us more susceptible to infection, disease, and/or acceleration of our disease process. I wish there were more studies on this topic. With regard, Rebecca (team member)
Susana Member
Feel the same since I was 15. I just tolerate the sun of the beach until 10 a.m. I think it is a symptom of autoimmune disorders, and we should have to respect this warning of our body, because sometimes the exposition to the sun activate to much our autoimmune sistem
1. Rebecca C Moderator & Contributor
 <inline-mention username="Susana" user-id="4124682"/> thanks for sharing your experience here in the community. We certainly should listen to our body's warnings and be vigilant in managing exposure to the sun and heat. It has terrible effects on our organs, causes dehydration, and confounds our thinking processes. Add this to autoimmune system dysfunction or illnesses, it can be detrimental to our health and well-being. Thanks for sharing. Regards, Rebecca (team member)
BajaArizona Member
I have it as well, which is very tough living in Arizona. Talk to your doc about dysautonomia, or autonomic disfunction. It's a broad category of issues, one of which is inability to regulate temperature. You might recognize some other symptoms as well. Best wishes!
1. Rebecca C Moderator & Contributor
 <inline-mention username="BajaArizona" user-id="8676223"/> Thanks so much for sharing. Living in Arizona certainly makes it much more difficult to manage to regulate one's body temperature. I've been here 20 years and I still find heat intolerance can be challenging to manage, especially with spondyloarthritis. Thanks for your view and for dropping off this information. It certainly could help. Regards, Rebecca (team member)
Ouch Member
I have been having heat intolerance for about 15 years with no known reason. Maybe this is another weird thing that could possibly be attributed to AS. This post is validating but I wish you didn’t experience this. 
1. Rebecca C Moderator & Contributor
 <inline-mention username="Ouch" user-id="9760174"/> Thanks so much for sharing. I'm sorry to hear you are also affected by heat. AS more than likely is a culprit of heat intolerance as well as other factors. I found this affected me once I hit menopause. It may also be a culmination of factors as well. There is an article that I found that may help those with AS/SpA understand - <a href='https://www.verywellhealth.com/ankylosing-spondylitis-and-weather-6828080' target='_blank' rel='noopener noreferrer ugc'>https://www.verywellhealth.com/ankylosing-spondylitis-and-weather-6828080</a> It seems spot on - wishing you the best. Rebecca (team member)
crbusman Member
Oh my goodness, this has been happening to me for the past 4-5 years and I had no idea what was going on, or why. I am post-menopausal, so hot flashes are not a "thing" for me anymore. Florida used to be my favorite place, but now I am having a difficult time tolerating even the summer heat in Maryland for any length of time, and moving to Florida is completely out of the question now. I have had AS since my early 20's, but only been on medication for it for 7-8 years since my diagnosis. My first guess would be medication-related because of the time frame, but I also wonder if it is more related to aging somehow? It's probably a combination of several different things, and in my case, I also have Ehlers-Danlos Syndrome, so it could be due to thermo dysregulation. It's so hard to know! At any rate, I completely empathize and sympathize with the author, and hope they will find us some answers!
1. Rebecca C Moderator & Contributor
 <inline-mention username="crbusman" user-id="2107228"/> Sorry to hear that you are dealing with the heated-up issue as well. Understandably, you're considering various factors, including medication and aging, as potential contributors to your challenges. It's not uncommon for individuals with spondyloarthritis to face different aspects of the condition over time. I get this occasionally as well and thought I was having low blood sugar crash (hypoglycemia), and would grab a carb to eat. It helps most of the time but can take a good 10-15 minutes. I also thought these symptoms could be from medication, but fail to identify which. Definitely frustrating! As I researched thermal dysregulation, I did find a great article explaining it - <a href='https://www.medicalnewstoday.com/articles/thermoregulation' target='_blank' rel='noopener noreferrer ugc'>https://www.medicalnewstoday.com/articles/thermoregulation</a> I have ice packs in the fridge to put on the back of my neck, a cold drink in the fridge ready to go, and usually find a comfortable place to plant myself until the "wave" is over. How do you cope? Hoping others chime in and give some good options. With regards, Rebecca (Community moderator)
CommunityMember770 Member
This could possibly be caused by medications making our systems susceptible to heat.
Cher D Member
Dear <inline-mention username="Amrita Bhowmick" user-id="2378898"/> <inline-mention username="CommunityMemberfb95c8" user-id="5529938"/>CommunityMemberfb95c8, <inline-mention username="Amrita Bhowmick" user-id="2378898"/> Gosh, I thought it was just me! Before my AS diagnosis, my husband and I loved visiting Florida, so much so that we sold our house in PA and moved to Florida. I still love the beauty here but my internal thermostat always runs on high heat. My husband and I settled on the air conditioner being set to 77 degrees. Still too hot for me , but I need to consider him. I buy lightweight clothes and that works somewhat. I'm just never really comfortable. I try to adapt for him because he's so supportive. I learned two years ago, after being a good swimmer all my life, that my legs and back do not support me in our pool. I managed to hold onto the side and make my way to the shallow end. It was quite an awakening! My heart goes out to you with the heat issue. We love our home here, so there's no going back north. All I can do is adapt. I truly understand your issue with heat.
CommunityMemberfb95c8 Member
Finally, I have found two people to raise this issue of low heat tolerance. I thought it was because I lived in Ecuador for three years soon after being diagnosed with AS. I don’t enjoy doing outdoor activities when it is over 28 degrees and warm poolside holidays, though enjoyable are hard for me to enjoy because of my body’s inability to regulate my body temperature optimally. Something I have also noticed is before going to bed and upon rising in the morning I will have a full body heat flush that lasts for a minute or two. It is similar to a hot flash, but much more whole body and intense. I am not sure if that is my AS/inflammation or high levels of cortisol release? Do any of you have similar symptoms? Thanks for sharing.
sheila Member
I have had this same problem for many years. I have Sjogrens, OA and RA. I have always just assumed that having no tolerance forI heat was part of these problems. I live in central Florida and the humidity is horrible for at least 6 months a year.
Jessica Gama Moderator & Contributor
I'm so glad to read of your experience, though not glad to hear that you also have heat/humidity intolerance! Honestly, it's hard to find solid information about how weather affects AS symptoms, but I've had the same issue with humidity. When I was living in Houston (with at least 90% humidity most days of the year), I just felt utterly exhausted all the time. For me, I think the humidity increased my fatigue levels for some reason. It seems similar to the way some people experienced increased arthritis pain when it's raining. Even though there's little scientific evidence to support the effects of rain on joint pain, or the effects of humidity on AS (or at least none that I've found), it doesn't change the fact that we experience a difference! Thanks for sharing!
1. Beverley Member
 <inline-mention username="Jessica Gama" user-id="2107572"/> My thermo regulation is shot to bits. Under 20 degrees I am virtually hypothermic and Raynaud's kicks in, over about 26 I cannot cool down and pass out! Absolutely ridiculous and very difficult to manage.
2. Doreen H Community Admin
 <inline-mention username="Beverley" user-id="4199991"/>, Oh my goodness that must be challenging. Has your healthcare provider offered any tips or suggestions on how to manage this? ~Doreen (Team Member)