Dysautonomia and other symptoms
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@Coggles77 oh interesting - I'm not sure if I have problems with the seasons but I've noticed that most of major deterioriations have occurred over the summer. I wonder how much the heat and fluid loss has contributed to that.
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@Coggles77 said in Managing the change of seasons:
I'm not sure my issue is change of season quite so much as simply a season. I've always struggled with the heat of summer so that's been one issue. But I think with warmer weather and longer days, it's easier to push more than I can manage, which then leads to a decline in winter. I just always thought winter was a worse season for me, but I don't think that anymore.
Summer is definitely hard for me in terms of OI, and winter is harder for me in terms of fibro pain.
I find the change in seasons hard too because my body struggles to adjust to the change in temperature and humidity.
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I told about 6 different Doctors including 4 Specialists that I kept having to lie on the floor or I would faint before one Neurologist listened to me and said “tell me more about this”. Had a tilt table test and my BP dropped to 40 systolic. Finally, I could prove that I wasn’t exaggerating- “ That was a bit dramatic “ they said
. Although on medication, I find dysautonomia one of my most debilitating symptoms. That is a great article and makes sense that the brain stem is involved. -
@Loulou , I’m glad you finally crossed paths with a specialist who took the time to listen and then act. The common story so often shared of multiple medical professionals dismissing symptoms is incredibly frustrating. Patient centred care is often unfortunately hard to find.... and when you’re unwell being your own advocate is beyond exhausting
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Personally I have experienced a lot of trouble with extreme heat sickness causing major tummy/bowel upsets and nausea. Also I can't seem to get warm on really cold days and suffer from very poor blood circulation and earache. I really rug up in winter and because of the earache wear a beanie. And in the case of my poor blood circulation I always keep a pair of compression stockings (knee highs) in my hand bag. These are good in summer also for when the fluid pools in my feet. It helps the fluid to drain. I am wondering what measures are the rest of the me/cfs community using to combat extreme weather conditions affecting their me/cfs symptoms?!
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Also I would highly recommend keeping water with when travelling to avoid dehydration. I have a bottle of water with me on the bus and keep a water caddy in my car at all times because of the extreme heat in the Riverland. I got caught out a few times with out it and felt very faint!
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Hi @donnamarie and all...
I also notice heat and cold has a big impact on me.
I find it hard to breath as well in very hot humid weather.
I tend to stay out of the direct sun because of the impact it has on me. So because I do this, I am always careful to make sure I keep my vitamin D uptake!
When I was first getting tests done after falling very ill, my vit D levels were very very low. So it’s good for us to keep an eye on these things.
If my head gets to hot I get migraines, so I am very careful to keep my head cool on hot days.
If I don’t have an ice gel cold pack in the freezer. Which I usually wrap in a tea towel as it’s a tad to frozen! 🥶
I wet a face washer and stick that in the freezer for awhile, it helps. Especially if placed on the back of the neck.
Another tip for migraine sufferers is to use cold packs on the head/ neck and heat packs on the feet....Also on the cold days I wear soooo many socks, my circulation is also bad and I find it hard to get my feet and hands warm ... they go from one extreme to the other
I also use clay heat packs they are soooooo good! They are flat so no painful lumpy bags and easy to zap in the microwave and stay warm for hours!
Plus I invested in good woollen gloves that have the thumb and first finger tip free so I can still read or use phone ect without taking them off!!These are priceless items to have when you want to be comfy and cool or warm.
Plus my ugg boots! And my fluffy dressing gown over my clothes lol
not to mention my rugs...I could ramble on.... -
I can totally relate to you. I also have very low vitamin D and during winter have to take up to 4 Vitamin D capsules a day to put me back in the normal range. I have a woolly beanie, gloves and a jacket lined with thick wool as well and up to 2 pairs of socks on and like you the Ugg boots. For heat I also use a face washer dipped in cool water. Apparently placing it on the back of the neck helps to cool the body down more quickly! I also sleep with a wet towel on me when I need to. Don't laugh but I also suck on ice cubes or an icy pole when the heat is extreme.
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@donnamarie Oh my .. temperature extremes are the worse. It's just awful, especially when your body suffers temp control. It can be zero degrees and I can be feeling overheated or 45 degrees and I'm in a cold sweat, yet check my temp and I'm normal ??? I tend to dress in layers so I can peel off and put on again. I use my dressing gown over clothes inside when I'm feeling cold. I'm usually the only one with long sleeves on when it's hot. I have to cover up all over from the sun due to vitiligo and I burn within a minute or so. I like the dry heat where I live but I overheat faster than normal and dehydrate quickly as well. I carry a water bottle if outside and I have a water spray bottle handy just to get some relief. Hats are your best friend no matter which extreme. Throws are the best when cold, especially pure wool. I always take one when travelling as sometimes the car heater is too suffocating. For a quick cooldown, the frozen bricks used for keeping food cool when travelling is a good thing to take with you if you suffer heat exhaustion on top of ME/CFS exhaustion; wrapped in a soft hand towel and placed over your feet, thighs or back of neck can help in feeling better. I suppose we all have to be prepared as our symptoms are prone to flare ups under extreme conditions. It's a battle to live in a constant state of needing to do something about your health and your symptoms just to get through the day; it is constantly on your mind and your body won't let you forget.
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@Tess Must get some ugg boots, I haven't worn them for years ... just read your reply to @donnamarie after I posted and I chuckled at the dressing gown ... I'm proud to say I wear mine over clothes as well.
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@crashdummy Great advice, layering up! I love the dressing gown tip!
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I do the layering as well - singlet, then long sleeve tshirt, then 1 or more cosy jackets. That's the top half.. Layering bottoms is something I still haven't totally figured out - can't exactly strip off pants when you overheat
I do have a large collection of long socks though (varying from calf length to knee length to above the knee), which I can take on and off as needed for varying amounts of extra warmth underneath whatever else I'm wearing. I have no qualms about wearing long socks with shorts and sandals, either. What can I say, I'm a fashion icon... -
One of the things not yet mentioned in terms of extremes of temperature that really impacts me is showering. The temperature change going into a hot shower seems to throw my body out of whack and I'll feel horrible for the rest of the day (it's not the exertion as I can manage more physically difficult things than showering). I've now resorted to only showering every other day (or less) which is the only way I can manage any other activity. I've tried lower temp showers but somehow just get cold so quickly, I'm definitely very sensitive to a very narrow range. Quick showers not every day is the only way my body can cope with the temperature impacts. Anyone else affected by this too?
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@Katt Definitely can relate to showering affecting me. I always heat up the room in winter first and if I overheat in the shower, the door is left open, to try find a balance in air temp. It is tricky showering yet I have my carer helping. The change in body temp makes me very dizzy. I have found that a hand shower works best as I can direct the water easier and sometimes I need to sit down to get the job done. I usually have a sweating saga for a least 2 hours after showering and it makes me feel like I haven't showered at all. I've given up on using the hairdryer. It is too heavy to hold up high for the length of time required. Even sitting whilst my carer dries my hair, just makes me feel nauseous as the direct heat on my head makes me overheat. Having wet hair, actually makes me feel ok when the after showering sweating begins. It must be awful for something that's meant to be relaxing and refreshing, ends up making you feel horrible for the rest of the day. So sorry you are robbed of this simple life pleasure.
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@Katt ugh yeah, I can only shower about once a fortnight because the heat of the shower dilates my blood vessels resulting in a very high heart rate which then uses all my energy and gives me PEM. My heart rate will remain high with lots of sweating for the rest of the day after showering. I've tried cooler showers and not been able to stand it - can really relate to having a very narrow comfortable temperature range. I know that if I alternate the hot water with bursts of cooler water it brings my heart rate down and helps conserve energy but I hate cold water so much I usually can't bring myself to do this!
Oh and I also leave both the shower door and bathroom door open to let out as much steam as possible and have a fan blasting cold air on me the whole time.. But it only helps so much -
Re: Managing the change of seasons This is a huge problem for me. with rapid change of temperature I fall more ill. My body temp gets out of control, usually getting colder. Often I have to take to my bed (if not already in it) fully dressed and even with the electric blanket on. It's the change. Rather than the season.
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I live in the tropics and only use fans not aircon . I really like open doors and windows. Here it is either really hot or hotter the humidity is extremely high so I spend my days in my jocks, I live alone by choice so it makes it easy to jump into a cold shower many times a day after I do small things around the place. I cant see me doing that in a workplace...
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@donnamarie said in How does extreme heat or cold affect your me/cfs symptoms?:
I can totally relate to you. I also have very low vitamin D and during winter have to take up to 4 Vitamin D capsules a day to put me back in the normal range. I have a woolly beanie, gloves and a jacket lined with thick wool as well and up to 2 pairs of socks on and like you the Ugg boots. For heat I also use a face washer dipped in cool water. Apparently placing it on the back of the neck helps to cool the body down more quickly! I also sleep with a wet towel on me when I need to. Don't laugh but I also suck on ice cubes or an icy pole when the heat is extreme.
Ooo that’s a good idea with the ice cubes ... I might make them into ice chips, so I don’t get a frozen mouth lol
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@crashdummy said in How does extreme heat or cold affect your me/cfs symptoms?:
@Tess Must get some ugg boots, I haven't worn them for years ... just read your reply to @donnamarie after I posted and I chuckled at the dressing gown ... I'm proud to say I wear mine over clothes as well.
Yes @crashdummy i have completely changed how I shop for my pjs and nightwear.... I make sure I have the comfiest and nicest feeling clothes for me as ...we end up in them so much we have to feel good in our pjs and dressing gowns ect....
I just wait for the specials on my favourite things! I love coming home and getting straight into my pjs or lounging about wear....
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@Katt said in How does extreme heat or cold affect your me/cfs symptoms?:
One of the things not yet mentioned in terms of extremes of temperature that really impacts me is showering. The temperature change going into a hot shower seems to throw my body out of whack and I'll feel horrible for the rest of the day (it's not the exertion as I can manage more physically difficult things than showering). I've now resorted to only showering every other day (or less) which is the only way I can manage any other activity. I've tried lower temp showers but somehow just get cold so quickly, I'm definitely very sensitive to a very narrow range. Quick showers not every day is the only way my body can cope with the temperature impacts. Anyone else affected by this too?
@katt I find I can’t have baths too hot... if I have one, I have to keep it coolish as otherwise I end up quite ill as in nearly passing out ill.
I definitely cannot do the to hot of a shower either 🥵We are certainly sensitive souls! We are extraordinarily special too though, I say!
