Heat Sensitivity, Cold Sensitivity & Infrared Sauna Therapy
After diagnosis there were many things I thought I’d have to kiss good bye from my life for good. But one thing I struggled with the most was giving up heat and suffering with heat sensitivity.
I thought I’d never be able to travel to warm countries again OR spend days on the beach bathing in the warm sun like I use to. Ben and I were both bought up by the ocean and it’s the reason we moved to Sydney so we could be by the ocean again after 2 years living in London. During that time all I could see was my old life crumbling away as things like wheelchairs, disability aids, prism glasses, physio appointments and speech therapists took over.
Back then I couldn’t see how much better I was going to get if at all, I literally thought my old life was over and a grim new chapter had begun. A new chapter had definitely begun but instead of getting worse from that point I’ve actually gotten better, month by month, year over year and I’ve seen massive improvements in my heat sensitivity. So I thought I'd let you know in this post how heat sensitivity and cold sensitivity has affected me and improved over the years to the point I can actually sunbath and handle infrared saunas again.
Then, in a follow up post I want to share all the wonderful benefits I notice from doing infrared saunas that I think you'll love! including some that have directly improved my symptoms, elevated healing and leave me feeling amazing!
heat sensitivity over the years
I first noticed signs of being heat sensitive just before my big episode. I remember I was constantly pulling my jumper off and putting it back on with temperature fluctuations and remember thinking - this is so strange. I then had moments where I thought I’d pass out in the hospital showers, sometimes I would just sit on the floor of the bathroom as the steam was enough to bring me to my knees. Back at that time I had no idea that it was actually a symptom. Then after my massive episode just taking a shower became physically exhausting, the effort and heat combined would make me feel so deeply fatigued that I'd be forced to rest or nap afterwards. My full story is here if you want to see how things unravelled during that time.
Once I returned home and we became more educated about heat aggravating symptoms we became cautious with EVERYTHING. Shade quickly became essential and planning my day around the shade and cooler parts of the day became our focus. We always parked our car in the shade and took our shade sail to every beach plus lots of water, snacks, sunscreen and a hat otherwise there was no way I would survive on the beach while Ben surfed. On the hottest days I wouldn’t be able to do much at all accept rest, Ben would sometimes drive me to the rock pool for a quick swim then whisk me home for more rest.
When I started swimming regularly I'd aim to get to the pool early to get a good spot under the rocks out of the sun and would always walk home in wet togs to help keep my body cool. If I accidentally got burnt or caught in the heat for too long my symptoms would flare causing a worsening in my double vision, balance, dehydration and fatigue. I quickly learnt getting burnt was an absolute no no back then. The heat raging on my skin would make me feel miserable.
Once I was able to do bigger walks these were also planned for early in the day before the sun was at it's hottest so I could be home by the fan for the hottest part of the day. These afternoons were mostly spent doing nothing more than resting on my bed on the cooler side of our apartment with deep fatigue. I'd also have cooling headbands in the freezer that I would tie around my head and neck on the super hot days. Temps in Sydney can get up in to the 40's so it can be pretty draining even for Ben.
Each Summer I’ve noticed my fatigue improve, infact I notice my fatigue constantly improving even now. It’s the slow and steady win you get from being on OMS.
When I started working again mid last year I noticed the heat affect me mostly with cognitive fog and fatigue. I’ve found that I’m faster on my feet and faster thinking in Winter. To help me through a hot day at work I start the day by drinking plenty of water to make sure I’m hydrated and energised as dehydration just makes everything worse. I also have a little USB desk fan that is an absolute saviour. I highly recommend getting one if you work in an office, mines from Muji. Plus water in a little spray bottle to mist on the face and body is also great!
But all of the above was/is only ever in Summer. In Winter I suffer more with cold sensitivity which I talk about further down this post. I also don’t seem to struggle with heat sensitivity when I exercise, as I’ve never noticed an exasperation in my symptoms. Even now that I'm running again, a 20 minute run is enough to get my body temp up and heart pumping but I feel energised afterwards. The fatigue only kicks in the next day when my muscles are a little sore which I expect.
For the first 6 months to a year after diagnosis I was so sick I didn’t have the strength or brain power to put the following into action. But now that I’m much better I’ve tuned in to what helps me survive the warmer months. At this stage in my healing the biggest thing I notice in the Summer heat is fatigue but it’s nothing on what it use to be, plus a little brain fog here and there.
In terms of things that help me get through Summer with more ease and comfort. Cold and hydrating foods are essential - water melon, rockmelon, papaya, paw paw, cucumber, mangos, coconut water for electrolytes, smoothie bowls, ice in everything and keep filtered water in the fridge always. Anything cold and hydrating I give myself permission to eat as much as my body needs as well as drinking plenty of water all day. I also learnt (this is a game-changer) to do cold showers or a quick dive in the sea first thing in the morning to bring my body temp down. This totally wipes away the fog and snaps me into action. Cold sea swims and/or cold showers throughout a hot day are also hugely energising, otherwise I can easily fade out with fatigue and brain fog and struggle to keep going even now.
I've also learnt that hot food on a hot day does very little to energise me, in fact it can send me straight back to bed. However hot food and drinks on a cold day I'm completely fine with. And as mentioned above - cooling head bands (you can get these from outdoor stores), water in a spray bottle to mist over the body (I use an old toner bottle) and fans, fans are also a necessity!
So after 2 and a half years on OMS and wondering if I’d ever be able to lay on the beach in the sun like I use to, I had a breakthrough. Last Summer was the very first Summer where I sun bathed for hours and swam in the ocean like I use to before diagnosis without suffering nausea, feeling weak or dizzy or suffering a symptom flare, which had happened to me the previous Summer. Don’t get me wrong I took food, water, a hat and sunscreen, and I also went for many swims to cool off plus I only stayed for a few hours at a time but it felt much more comfortable and tolerable this year.
Since diagnosis we’ve also spent a month living in Singapore, a few days in Bali and a week in Byron Bay. These places are all notorious for their heat and humidity but with a little management I was completely fine.
I found this article on www.brainblogger.com which I thought was interesting as it may offer an explanation as to why my heat sensitivity is healing.
Earlier this year my neurologist told me that I seem to have healed my brain 100% and that I’ll continue to get better which was amazing news. I currently have no plaques and have had no new plaques since my initial episode and diagnosis. This is definitely a combination of Tysabri and The OMS program working their magic! thank goodness!! I've had gradual yet continual healing on the OMS program and Tysabri has also been amazing.
So, don't give up!! hang in there! healing is slow and gradual but it's happening for me so it can happen for you!
On the flip side I am completely intolerant to the cold. This is more of a personal biological thing with my body and not related directly to MS because I’ve always been like this. But I’ve heard from others who can relate to me, that the cold tends to aggravate their symptoms too. I get cold hands and feet even with multiple layers on which only amplifies feeling colder, my muscles tense up more causing more aches and stiffness, my nystagmus worsens and my bladder use to go into over-drive. Also when I was suffering with freezing episodes the cold would aggravate them causing me to freeze-up more often which was really enjoyable as you can imagine! did I ever mention MS is glamorous?
So given my intolerance for the cold and feeling more confident that I could function better in the heat, I decided to push forward and start doing saunas again to help with my recovery. I use to do them regularly before diagnosis and absolutely LOVED them.
enter infrared sauna Therapy
During my research months when I discovered OMS I also learnt that sweating is hugely beneficial for autoimmune disease and healing because it’s detoxifying. I had read that Dr Terry Wahls was able to do infrared sauna again due to her recovery on her Wahls Protocol and she now has an infrared sauna in her home so she can do them regularly which I found really inspiring. So I set myself a goal to get well enough to do them again as I knew it would benefit my recovery.
So as soon as I felt well enough I booked an appointment (about a year and a half after diagnosis) to do my very first infrared sauna post diagnosis. I reasoned that...
1. I could always jump out if I felt unwell
2. I would do a cold shower straight after especially over my head to help bring my body temp down
3. I would drink plenty of water both before, during and after to avoid dehydration
I was a little anxious for my first appointment but I was completely fine. I withstood the whole 30 minutes and the heat got up to 67 degrees celsius by the end, I sweated it out then jumped straight in to a cold shower. I felt a little wobbly walking home but I kept drinking water and nothing else flared that alarmed me, so I took that as a success!
After doing them regularly and feeling the benefits I got chatting to Clearlight about home saunas and they kindly sent me one of their Infrared Sauna Dome’s to trial for 6 months and I am completely IN LOVE. I've been doing 2-3 a week for the last 3 months and again began to notice all the beautiful benefits including some that have directly benefitted symptoms, which I want to share with you in my next post!
I’m not sure if i’m your classic heat sensitivity sufferer but I guess that’s the nature of MS, we’re all so different. I’m interested to hear how you guys go in the heat, how does it affect you? can any of you relate to my sensitivity or is mine somewhat mild compared to yours? also, has anyone else had a healing breakthrough on OMS with their heat sensitivity? I would love to hear your stories too.
Much Love! x