Heat, Fibromyalgia, & Central Sensitivity Syndrome (or, why I can’t handle being hot!).

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Favorite spot: right in front of the AC :)

Hi!  So.. I try to keep the posts on my blog mostly cheerful.   I always want my blog to be a place that reflects a sense of hope and healing, where people can come to feel uplifted.

But… I also blog to share my truth with people, and to connect.

And the truth is that I have central sensitization syndrome, or fibromyalgia (still working out which term I think is best).

I’ve been concentrating so much on writing my SI joint blog recently that I haven’t been writing so much about pain science, in general.

But the past few weeks, it’s been hot.  Really hot.

And now I’m reminded, on a personal level, how central sensitization really isn’t just about pain.  Instead, it’s about everything our central nervous system is responsible for regulating… and the fact that our ability to regulate it has been thrown off.

Something that should be so small, for another person… for people with central sensitization, it can be huge.

I’m about to tell you why I’ve been so miserable, and why, so far, I’ve spent most of the weekend just lying on my bed.

As I write this, I feel like what I’m going to say sounds so silly, so benign.  But this is the reality of struggling with central sensitization– our symptoms can sound ridiculous to other people.  They can even sound ridiculous to us.  But they are still happening.

So I will tell you that my apartment is too hot.  

I should spare you the boring details, but this post won’t make sense if I don’t explain that this is my first summer in this new apartment.  I don’t have central AC in this place, as I have in summers past.  I’ve been trying to get away with one small window air conditioner for my whole place, and it’s been an epic fail.

I know what I’m saying might sound ridiculous to the average person.  Because it’s not really a big deal, right?   Just buy another air conditioner and move on.

But for me, this situation is reminding me, so strongly, that I really do have a problem with central sensitization.

Because sometimes, my body doesn’t let me just “move on.”  It’s not just like I just noticed that I felt hot.  I’ve been exhausted.

I feel like I didn’t get any warning.  I didn’t just have some mild discomfort and then think “oh, I should probably do something about the fact that my apartment is so hot.”

Instead, it hit me like a ton of bricks.  Like a virus.

Originally, I’d wanted to wait and see if one AC was enough, before buying a second.  When it first started to get hot a few weeks ago, I thought I could just spend most of my time in the bedroom (my air conditioned room) and limit my time in the rest of the place.

But no.

As the summer’s gotten hotter, I’ve found that I don’t just get hot.  I get exhausted, quickly: I can’t think clearly.  I go on anxiety spirals.

I’ve constantly felt like I’ve been coming down with something… but I haven’t actually gotten sick.

If I leave my air conditioned bedroom and walk into the 82-degree living room for 5 minutes, I get dizzy.

This is crazy, right?  I know it sounds crazy.  It doesn’t make sense!   

But that doesn’t mean I’m not also experiencing it.

I noticed that if I retreat back to my 74-degree bedroom, after about 20 minutes, I’ll start to feel calm again.  My anxiety will go away, and my thoughts will become rational again.

But apparently, I really can’t handle even the back and forth to the rest of the apartment, even if I have my cool bedroom to go back to.

I know plenty of people who live this way, no problem.

And I know a few people who barely use their air conditioners at all.

I know that what I’m experiencing sounds extreme.  And yet, it’s happening.

I think it’s a heightened version of the way everyone gets tired, when they’re overheated.  It’s how our body protects us, by forcing us to stay still and keep cool.

Only my body is perceiving the walk from my bedroom to the kitchen as a threat to homeostasis– or, in other words, its ability to keep things regulated.

Research

Honestly, I was getting pretty upset, when I remembered to do what I always do, in the end: slow down.  Take a deep breath.  And do some reading.  Remember that there is a name for what I’m experiencing, and that I always feel better when I try to learn about it.

So I went back and watched my favorite video from Dr. Sletten at the Mayo Clinic:

I shared this video in my last post too…  I guess I probably can’t share it in every post (or can I?!).  But it really pulled me out of the depths of despair right now, so of course I had to share it again.  (Thank you, Dr. Sletten!  I’ve never met you but I feel like I’m your biggest Internet fan!).

This video is really the most reassuring thing I’ve found out there.

In the first screenshot, which I took at the 2:30 mark, Dr. Sletten outlines some of the various systems our body uses to maintain homeostasis:

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He explains, “If you’re too hot, you might to go to a place to cool off.  If you’re thirsty, you might drink some water.  If you have to go the bathroom, you go to the bathroom.”  These are all ways in which we respond to the input that our peripheral nervous system gives us, in order to take care of our body.

As he says, “The signal itself is not abnormal.”

The problem sets in when these signals get upregulated– meaning a stronger and stronger signal gets sent to the brain.

The somatosensory cortex is the part of our brain that processes all of these sensations coming from our body.  When these signals are upregulated, that means they’re stronger and more uncomfortable.

In the red marker below, you can see where he wrote a list of some of the sensations and triggers that can arise when the nervous system has been sensitized.  He included temperature as a potential trigger, as well as a change in barometric pressure (which I, personally, haven’t experienced, but I would imagine this would make people feel as crazy as I feel right now).

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So, honestly.. I don’t really know how to fix this.

I’ve come a long way in managing the chronic musculoskeletal pain aspect of this, using an awesome approach called pain neurophysiology education.   But that doesn’t mean that central sensitization is completely reversible (although new treatments are being researched every day!).

For now, I personally feel better if I can just learn about it.

To know there are other people out there going through the same thing, and that there are doctors and researchers out there who won’t think I’m crazy.  To know that it’s not “in my head,” although it is in my nervous system.

I just need to know this about myself.  I have symptoms of central sensitization, and one of them is that I don’t handle heat well.   Temperature is not something I can be too flexible with.

Does anyone else out there experience this?

I know this post was not my normal cheerful, upbeat post.  I’m genuinely curious if anyone else out there goes through this.

Dr. Sletten’s video helped me a lot, but if anyone else out there feels the same way, please let me know!

And, whether or not heat is a factor for you, I hope you’re enjoying the summer!

Me… I’ll be off to buy another air conditioner now.  :)

Related:

9 thoughts on “Heat, Fibromyalgia, & Central Sensitivity Syndrome (or, why I can’t handle being hot!).

  1. geomickb says:

    I’m only just starting to manage my CS. What does everyone else do when they have a flare-up? Rest, or keep moving?

  2. BEV TOLER says:

    Going to watch the video after I leave this comment. Thank you for your articles! I can definitely relate on several levels. First, so many people judge by how THEY feel (their health) and how we appear to them on the OUTSIDE! If we APPEAR healthy then we CAN’T possibly be sick or nearly as sick as we say that we are. No way! Not to them. And especially the younger you are, and how much younger you are than them. Then they make into a contest of how many more ailments they have than you do or how if they can cope with SIMILAR problems then you should be able to also. Huh!!!! And of course, then that leads to the inevitable INCORRECT conclusion that either A: you’re a hypochondriac, B: you’re EXTREMELY lazy, C: you’re crazy, nuts, etc., D: some of the previous reasons or E: ALL of the above! Usually, I’ve found that they conclude that it’s most or all of the above. I should know. I’ve been through EVERY scenario I just listed and then numerous others. And don’t let me get started on all of the plethora or well meaning forcefully given SUGGESTIONS and cure all treatments they highly recommend despite not having any of the same health issues or a PHD .
    I have fibromyalgia and a very lengthy list of a whole host of other medical issues. It’s so long that I sometimes miss listing a few when I fill out the initial forms when I have to go to a new clinic.
    Today I had to undergo the second round of numbing injections for my si joints. The one on the left side has fused together all on it’s own. Try getting a needle into that!!!!! The third step is nerve ablation. The injections are extremely painful and if it wasn’t for the pain relief later I would never go through with the treatments!!! Ever! The nerve ablation (nerve burning) treatments are great for shorting out the pain but you still have to remember that it doesn’t nullify or fix the problem itself. Such as for the 6 of 7 worn discs with a herniated one at C4-C5 location. The discs are so worn that they pop, crackle, grind, shift out of place and still cause severe migraines. I just don’t feel the pain around the discs themselves. The gain: I don’t get the migraines quite as often and at least with that particular area not hurting my sleep has improved some. With regard to my fibromyalgia, the discs, and several areas in my body that have severe arthritis, let me tell you, BAROMETRIC pressure changes DO hurt!
    We had severe thunderstorms several days in a row here this past weekend. The first day I woke up in excruciating pain from head to toe. Severe body aches, exhaustion, mind fog, depression, severe sinus pressure, the discs acting up far more than usual and blinding migraines among other things.
    Once the last severe thunderstorms finished up on Sunday and the barometric pressure started dropping the symptoms started easing up. By late Monday evening I finally managed to push myself into dressing to go out to Food Lion which is only 4-5 minutes from my house. Even then, I was pretty worn out and ready for the recliner. I didn’t even do a full shopping trip. Only bought 6 things.
    Anyway, the best answer to my very long post is to make sure that you know your own body, research online and search out competent doctors who will actually treat you with dignity and as a real person, not just another dime or dollar bill into their pocket. And even though it’s often difficult, try to be patient with those around you who don’t understand what you’re going through. Ask them for their emotional support instead of trying to explain in detail since they get lost in the first sentence or two. Tell them that you’re well preserved on the outside and about a 1000 on the inside but that you’re receiving qualified medical treatment(s) for health issues. Usually that tends to work better. Also, find a true friend, especially one that is in a similar health situation if possible, and support each through good times and bad. You’ll both feel better for it.

    • Sunlight in Winter says:

      Hi Bev, thank you so much for sharing your story! I’m sorry to hear you’re going through all this. Wow… I definitely see what you mean about barometric pressure. I’m really fortunate that that doesn’t seem to be an issue for me at this time. I remember my exercise physiology professor telling our class that he absolutely believed people when they said they experienced this, since the pressure really can affect what’s going on with your joints. It’s definitely 100% real.

      I’m really glad my blog has been helpful. Sometimes I can’t believe the amount of personal info I put online, but ultimately, I want people to know they’re not alone (and it really helps me to hear back, and know that I am not alone!).

      And yes, you’re totally right about seeking out doctors who will treat you with respect. They *are* out there. In my experience, you really have to believe in yourself, in order to believe that you WILL find answers and keep looking.

  3. Anonymous says:

    Hi Christy. Thank you so much for sharing this video! It brought to tears. For the first time in way too many years, I feel like I may be understanding a little about what is going on with my body. It helps! Every little bit helps. And yes, I too am incredibly intolerant of heat, though I love being outside in the sun and doing things like mowing the yard. Again, thank you for sharing this video and givng hope by way of knowledge.

    • Sunlight in Winter says:

      Hi there! The video totally made me cry the first time I watched it, too. It can set off a lot of emotions, when we feel like someone *finally* understands us after so long. Really glad you found my post!

  4. Kelly says:

    I am glad to know that I am not a lone in this! I am very young and none of my friends and family get it. They just think I’m lazy. It hurts! This was great for me thank you!

  5. Sandra says:

    Hello Christy, just come across your site whilst trawling around fibromyalgia stuff.
    Yes, my partner has it too, cant stand the heat, cant stand heavy, cloudy weather either, we laugh and say his barometer is twitching but in reality theres nothing funny about the amount of pain and discomfort he experiences.
    Sending you best wishes. X

    • Sunlight in Winter says:

      Hi Sandra, thank you for letting me know I’m not alone! Sorry to hear your partner struggles in this way. I like the barometer twitching metaphor– that is a great way to think of it. Best wishes to you both as well!

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