HEAT INTOLERANCE IN NMO
Did you know that for years, the “hot bath” test was used to diagnose multiple sclerosis? And while NMO is NOT MS, we share similar issues when it comes to heat intolerance. So, when I talk about the “hot bath test”, what happened is that doctors would immerse patients that they thought had MS in a tub of hot water and if their symptoms worsened the doctors would take that as a diagnosis of MS. So, it stands to reason that the same could be said of NMO, right?
Many NMO patients experience a temporary worsening of symptoms when the weather is hot or humid, even when they run a fever. It comes from an elevation in our bodies core temperature, which impairs the ability of demyelinated nerves to conduct electrical impulses.
What this means for NMO patients is that if you’ve had Optic Neuritis in the past, and have demyelination on the optic nerve, your vision may become blurry. It may even become painful. If you have had Transverse Myelitis in the past, and have demyelination in those areas, you may find yourself getting wobbly on your feet, tingly, or even loose sensation to areas you have been affected in the past.
What you need to know is that these heat-related symptoms are TEMPORARY! The heat generally only produces temporary worsening of symptoms. It does NOT mean that you are having more disease activity. These symptoms will generally reverse themselves quickly when the source of increased temperature is removed.
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What are some strategies you can use to ease the effects of heat intolerance?
• Stay in air-conditioned environments during periods of extreme heat and humidity.
• Use cooling products such as vests, neck wraps, and bandana during exercise or outdoor activity.
• Wear lightweight, loose, breathable clothing.
• Drink cold drinks, chew on ice, or eat popsicles.
• Use an oscillating fan or air conditioning during indoor exercise.
• Exercise in a cool pool (<85*) or a cool environment. If you are exercising outside, pick cooler times of the day, usually early morning or evening.
• Try pre and post cooling to decrease your core temperature. An idea of this is getting into a bathtub of cool water and continue to add cooler water over a period of 20-30 minutes. This will decrease your core temperature.
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For those of you with NMO or if you know someone with it, the fact that plans can suddenly get canceled is nothing new. I think most NMO patients have done this on more than one occasion. It is a prevalent problem in the NMO community. Bottom line is, canceling plants isn’t pleasant. Missing out on something, whether it be something big like a wedding or small like meeting friends out, can stick with us for a while. The more and more we have to cancel plans the more easily it can take its toll emotionally. Mentally, many of us get worn out by it. We start to feel like we should never make plans because of the high probability that we may need to break them. Sometimes those we have to cancel on understand and sometimes they do not. Often, as patients, we are the ones that have difficulty accepting it. It’s very easy to say, well, “I’ll just be a hermit, why even bother trying to maintain a semi-normal life?”.
This issue becomes even harder during warmer months. While our friends and family are celebrating or having fun outdoors, often we can’t, even if we really want to. If we try to go out and ‘pretend’ to be normal we often pay for it. Whether it is this day or the next week! There are times we just have to take care of ourselves, and instead of going to that outdoor party, choose to instead stay indoors in the air conditioning and have a movie day. Don’t let it depress you, but find something that can keep you busy in cooler atmospheres, whether its reading a book or watching a movie, or keeping an indoor garden. You can have a life, even if you can’t always get to enjoy the things you wish you could. Your friends and family will understand, and if they don’t that is their loss. NMO doesn’t own you and you shouldn’t allow it to. Find ways to live your life and it may help to look at the suggestions above to help combat heat intolerance.