Multiple Sclerosis & Temperature Sensitivity

Well played MS!  Well played!

I think I might go live in a bubble….

From the very start of this journey, from the very first symptoms that eventually led to my diagnosis, heat has always been my nemesis.  

HEAT = MESSED UP

My vision goes to crap and my mind gets completely foggy (like have had a few shots.)  Any time my body temperature rises, these things happen.  Even having a hot cup of coffee or tea can bring it on.  

Given that I am someone that loves being outside, that loves going to the beach, that loves sunshine, this has not been easy to accept.  But that’s the thing about this disease.  I don’t have a choice, I don’t have a say in the matter.  It’s going to happen, whether I like it or not.  So I have outfitted my life with “back-up” plans.  Cooling vests, hand held fans and things that can provide me with shade have become a “thing.”  I’ve adapted and it’s now just a part of my life.  Don’t get me wrong – it is as annoying as hell – but it is simply my reality these days.

So, imagine my surprise when I discovered a NEW MS symptom.  One that I haven’t experienced before.  Apparently now I have issues with cold temperatures!  I’ve never enjoyed feeling cold – and it drives me absolutely nuts that my feet ALWAYS feel like they are cold (even on a 100-degree day, they FEEL cold.)  But colder temperatures have never been an issue as far as this disease goes…until now that is.  

While we were out fishing this past weekend, it was a fairly cool morning.  Add in a bit of wind, and the layers I had piled on when the alarm went off at some un-godly hour did little to keep me warm.  I started shivering and shaking – and then it’s like it went into overdrive.  It felt as if my actual muscles where to shaking inside my body.  And it hurt!  It was a combination of aching and muscle spasms.  The shaking continued throughout the morning.  More warm clothes, an extra pair of socks, a fleece blanket and the portable heater we have on board did nothing to stop the weird/painful sensations.  It didn’t stop until the temperature began to warm up.  As the day got warmer, the shakes and shivers and the pain that came along with them, went away.  

 

I wasn’t too cold and I wasn’t too hot.  

I was JUST right…  

 

But the day continued to heat up and I quickly found myself using the washout hose on the side of the boat to cool my feet off and try and stave off the vision and mind issues that come with being overheated.  It was more than a bit ironic that I was actually TRYING to make myself COLD – after what I had just been through earlier in the day.  I had about 30 minutes of “just right” between having MS issues because of being cold and the MS issues that arise when my body temperature goes up.  

When the hell did I become so picky?  When did my body decide that it was going to be so damn high maintenance? 

As we were driving home it struck me – now instead of saying I have HEAT SENSITIVITY, I am going to have to say that I have TEMPERATURE SENSITIVITY.  

I am thinking that maybe I should think about becoming a “bubble girl” – live inside of a bubble where temperature, sounds, and lights are all controlled.  It might be a bit inconvenient, to try and go about life inside of a bubble – but if I could put myself in an environment that avoided all these issues, it might be worth it!

It seems the sole objective of this disease is to fuck with me.  Each time I think that I have a handle on how I feel, every time I think I am familiar with the symptoms, just when I think I got this – something new pops up.  Not knowing what tomorrow will be like, not knowing when the disease is going to decide to mess with me again is exhausting.

 

**This is my personal blog and all opinions are my own.  I am not a doctor, nor do I play one here on my blog. The content here is for informational and entertainment purposes only and is not intended to replace the advice of medical professionals.  Be sure to contact your doctor before trying any new medications/vitamins/supplements, physical activities or therapies **

10 Replies to “Multiple Sclerosis & Temperature Sensitivity”

  1. Wow. I just learned alot! I didn’t know it was an MS thing! I’ve had problems with temperatures for a while now. Maybe a year. I can be freezing and my body feels hot to the touch or I’ll be flushed and ‘healthy’ looking. I’m usually very pale. Thank you so much for sharing your story of your life and experience with this M.ore S. – – -. Pardon my language. I’m going to follow you regularly. I learned so much and I used to be an OTR! Thanks again and God bless you!!!

  2. The heat thing destroys me. My normal ways of comforting myself were to take a hot bubble bath, go to the beach (my happy place) and walk. For ages the bath was OK. About 5 years ago, I literally collapsed on the beach in Montauk. We discovered that I had to be careful in the subway if it was over 85 outside, I literally lost the ability to walk. Forget walking to think things through. Last year I noticed walking from the handicapped spot in the parking lot or walking into the library which has an incredibly small lot in sun and heat DESTROYED me. Early this summer, while I was still working, I was teased abot La Dolce Vita as I would leave the office in my glamourous Italian straw hat and Audrey Hepburnesque sunglasses. Cold has never agreed with me, child of a tropical mother. I have always had cold feet. The challenge for me with cold is I can’t wear boots due to the spectral leg. If I was commuting, I couldn’t take the chance on the railroad being disrupted. Snow? A coating disrupts my balance.
    Oh, and for me, melatonin for heat does zip.
    My new wrinke? If it’s windy I can’t go out by myself. If the walking stick blows, I am done for. Luckily, at my last job, I worked near a guy who was literally 6’7 and built like a tree

    1. HAHAHA! I’m sure “tree guy” was happy to lend a hand:) Thanks so much for sharing! It’s all so damn weird, confusing and annoying and it really IS so hard to try and explain it to anyone that doesn’t live with it:)

      Cheers,
      Meg

    1. HAHAHA! I Totally get it! And often times feel as if I should follow a like up with a similar message. Feels pretty shitty to be “liking” someone else’s crap:)

      I get it – and thanks for “liking” me!!!!:)

      Cheers!
      Meg

  3. I have had this problem for years. This is actually called temperature disregulation. I like this term because it covers all the bases when people don’t get it.

    1. Hey Janet…
      Huh…I learn something new every day:) I’ll have to google it – although I don’t really NEED to read about it- I’ve lived it:)

      Thanks so much for sharing!

      Cheers!
      Meg

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