Temperature Regulation is supposed to happen naturally. Unfortunately many people with complex health conditions find that this simply doesn’t work.
As many of you may know I have Postural Orthostatic Tachycardia Syndrome (PoTS). Basically, because of my Ehlers Danlos my autonomic system is a bit wonky. I struggle to adjust to postural changes and experience a range of symptoms when upright like racing heart rate, dizziness, breathlessness and fatigue. You can find out more about PoTS from PoTS UK.
The Autonomic System controls a number of bodily functions like blood pressure and heart rate, your breathing, your temperature, how much you sweat, digestion and metabolism, the amount of salts in your body, getting rid of waste (pee and poop) as well as some hormonal responses (like arousal or ‘fight and flight’).
In some people, their body’s ability to do some or all of this is compromised. In my case the fault lies with PoTS but there are lots of other medical conditions that can cause similar symptoms such as Multiple Sclerosis, Diabetes, Peripheral Neuropathies, Fibromyalgia and of course other Autonomic Dysfunctions to name a few.
Some people may have issues with many or all of the autonomic aspects, others just a few.
My main issue is temperature regulation. I can feel too hot at relatively low temperatures. I sometimes look and feel drunk, I struggle to string sentences together if I can speak at all, I get dizzy and my heart rate shoots up. Add in the cold sweats, tremors, muscle spasms and headaches and its generally not a pleasant experience. Along side PoTS my EDS has also caused Raynaud’s, the circulation in my extremities cuts off at the first hint of cold and tends not to return for a few hours, this leads to very cold hands and feet that turn white, blue or purple and burn like a #*&$%£ when the circulation finally returns. For many people this is annoying and uncomfortable but for some people this can be more serious leading to more complex problems.
So my PoTS makes me intolerant to heat and my Raynauds makes me intolerant to cold…how do I cope?
When trying to stay cool its important not to drift into cold territory. If you get cold your body’s natural response is to try to warm you up again. You can easily slip into a cycle of too hot and too cold. If you’re shivering then you’ve gone too far and you’re cold.
Tips for staying cool
Stay hydrated – especially if you’re prone to dizziness or fainting. Isotonic drinks like Powerade, Gatorade or Lucosade sport are great but can be high in sugar, for a slightly healthier option there are isotonic drink tablets you can just mix with water, I use Nuun Tablets.
Pacing – Try to avoid getting too hot by taking regular breaks especially when exercising.
Layers – lots of thin layers of clothing, I try to avoid big chunky jumpers and synthetic fabrics. Thin layers give you more options about how much clothing you want to wear without it being bulky and restrictive.
Bamboo – Natural fibre (like Bamboo & cotton) fabrics are becoming more popular and I love them. I have a couple of tops, leggings, hoodies and socks from BAM. According to them Bamboo is warm but highly breathable so its suitable for all temperatures. If that wasn’t enough it also has anti-fungal properties, is incredibly soft, anti-static, great for sensitive skin, offers UV protection and is moisture wicking so its perfect for exercise or for those who sweat a lot.
Evaporation Cooling – Our body does this naturally as we sweat, as the sweat evaporates it uses energy (heat) to turn from a liquid to a gas, if the sweat doesn’t have enough energy to evaporate it steals heat from your skin to finish evaporating the end effect is that the sweat evaporates and you are left cooler. Now take this a step further, any liquid evaporating from your skin will cool you down so to cool yourself further you simply need more liquid on your skin. You can buy little water spray bottles from high street chemists or off the internet, they are usually used by hairdressers but you can just as easily pop one in your handbag to carry around on hot days. Simply spray it on your skin to cool down. Just make sure it has a spray lock or every time you jostle your handbag its contents get a little bit wetter!! If you’re using this method and you still aren’t cooling down enough you can use handheld electric travel fans or folding fans to speed up the evaporation process.
Miracle cool sprays – these work in much the same way as evaporation cooling but with fancy labels and fresh summer smells. The evaporant chemicals make them evaporate faster (and thus cool you down faster) but with any added chemicals there’s always someone who will be allergic so be careful and check the labels. If you’re not sure then maybe stick with water sprays instead.
Phase Change Material – this is a pretty high-tech fancy material that can be used in cooling clothing. I have a Phase change cooling vest. I especially love my cooling vest for sport but during the hot summer months it’s a life saver. You can also get abdominal wraps, cooling hats and neck wraps too.
Adjust to temperatures gradually – This is actually much more important during the winter, the outside temperature is really cold so you wrap up warm but when you reach your destination the heating is on full blast and the windows are shut tight. I try to start taking off my winter layers before entering the hot building, by the time I get where I’m going I’ve usually warmed up from the walking/wheeling so I might unzip my coat a minute before I get to the destination or take off a scarf and hat before I get there. This way I’ve started to cool down a little before enter the hot indoors of my destination. This is much easier if you’re wearing layers.
I carry it with me pretty much everywhere! I recommend you check it out, especially if your speech is affected by over heating.
Tips for staying warm
Layers – great for staying warm and keeping control over your temperature. Synthetic fibres are great at retaining heat but aren’t especially breathable so if you’re worried about getting sweaty then stick with natural fibres.
Pashmina scarves – these are really popular and easy to get hold of. You can either wear it as a scarf or wrap it around your shoulders, drape it over your lap or wrap your hands/feet up in it. If you’re desperate they also work well as improvised slings for un-expected shoulder dislocations!
Gloves, wrist warmers and arm warmers – great for keeping heat in your hands and fingers. With cold toes check out camping shops for hardcore trekking socks or try layering socks and slippers. For those with Raynauds, gloves and wrist warmers can be worn with sleeveless tops. Keep the warmth in your hands but avoid over-heating the rest of you. Compression gloves are brilliant if regular gloves aren’t working well enough, you might find the seams irritate your hands, if that’s the case then try turning them inside out. Compression gloves are usually thin enough that you can layer warmer gloves over the top.
Keep moving – the more you move the warmer you’ll be, movement gets your circulation pumping. Even just moving your fingers regularly can help.
Avoid freezing temperatures – I almost always ask other people to handle frozen food for me (including asking strangers in shops to put frozen food in the trolley). If I’m holding a bowl of ice cream I’ll wrap the bowl in a kitchen towel to create a barrier between the cold and my hands. Double layer ‘insulated’ cups and mugs are a great way to have cold drinks without cold hands.
Moisturiser – Poor circulation can lead to dry skin and this is certainly the case for me, I try to moisture my hands about 3 times a day, the act of rubbing in the moisturiser actually helps warm up my hands as well as keeping my skin in good condition.
Supplements – Some people have had good results with supplements and certain foods like omega 3, ginger and pineapple.
Hand warmers – these come in a few different types, you can get electric ones or the chemical ones where you click the metal disk to activate them. Click heat packs also come in much bigger sizes and there’s always the electric blanket option.
If you’re doing your best to manage your symptoms and still having problems it might be worth speaking to your doctor. I hope some of these tips come in handy, if you are reading this and you have any tips to add please let me know. As always I’d love to hear any feedback! If you decided to try any tips then let me know how you get on!