Heat intolerance?

Does anyone suffer from heat intolerance with hughes syndrome? I haven't actually been diagnosed with this but had antiphospholipid antibodies a couple years ago that was blown off by my rheumy and never rechecked. I ask this because I am supposed to see a neurologist for suspected MS. Symptoms include weakness in my lower body, muscle spasms in my thigh area, tight calves, muscle twitching, stuttering, loss of words, balance issues, tripping over my right foot, and headache behind my right eye... the one that concerns me the most is the heat intolerance lately has gotten really bad and I don't seem to sweat as I should to cool off.... basically I have to stop what I am doing and take a cool shower to feel better.

I would appreciate any questions or suggestions.


10 Replies

  • Hello Theresa. The symptoms you describe are quite similar to those I experienced in my early twenties. At the time, they thought I might have MS. However, it turned out I have APS and don't have MS.

    My understanding is that the symptoms of these diseases can be similar depending on what portion of your brain is affected by either TIA (common to persons with APS) or de-myelenation of the nerves (common to those with MS).

    - Jeanette

  • Oh, and I forgot to mention the heat intolerance. I live in a moderate climate (California), but when the temperature gets above eighty degrees, I feel really out of sorts...I'm not sure if this is something related to APS or just that I'm a person who doesn't like to get too warm. - Jeanette

  • Hi there, hopefully somebody on here will be able to give you a specialist with APS knowledge not to far from you - as your rheumatologistist is obviously not up to speed. I do hope you can access something more user friendly.

    Mary F x

  • I find that I am ok in the shade but really feel awful in the sun I also seem to like my shower a lot cooler than anyone else.Karen xx

  • I have similar heat issues - I feel like I overheat and can't cool down. Sometimes I can actually faint if I don't get to a cool dark space in time! I've got acute post thrombotic syndrome in my legs from some extensive clotting and the heat does make me very sore and swell too. In summer I more often than not stay in the house and have the air con machine in the room with me - find that does the job!

  • Heat dilates blood vessels, and this can effect blood sugar levels. And hypoglycemia aggravates heat intolerance. The heat makes the low blood sugar worse and the low blood sugar makes the heat issues worse. When the temp goes up I have to be much more strict with myself about avoiding high glycemic foods.


  • Hi Teresa.....I cannot tolerate heating...especially humidity....If I begin to experience "getting hot" my body goes into overdrive..."feels like a hot flash"(it is not related to menopause)..this also happens when I experience stress......I need to go into air conditioning asap.....

  • Teresa where do you live......US/UK???

  • US

  • Hi everyone,

    I have had heat intolerance for as long as I can remember. If I play tennis too long in the sun, I get a sunstroke (dizziness to the point of almost fainting, headache)....I can feel when it is about to happen and I stop. Just today I was playing golf in the sun and felt weak and faint and had to stop. I never until now thought it could be related to APS. Thanks for sharing!

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