Dysautonomia and other symptoms
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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!
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@crashdummy said in How does extreme heat or cold affect your me/cfs symptoms?:
@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.
@crashdummy I’m the same! What is with the dam sweating after a shower
frustrating stuff... I always walk around in light clothing for awhile until my body settles... -
Hi everyone,
Belinda here, 11yrs with ME.
During the more severe early years, if the wind blew cold I would get a surge of adrenaline, shake, get a racing heart and then crash for days.
Whilst still with severe ME but not quite as severe my husband and I took a cruise holiday with our little kids. Took a room without a window and it was very dark and silent. Interestingly, I went to the sauna in the quiet time alone as my once a day activity which was normally laundry. At first I felt very unwell, but for some reason I persisted and after 3 times of sweating I was used to it and my bodyaches reduced significantly. Whilst I am not advocating to everyone to 'persist' at an activity at all: we all know that it's not a case of just practicing an activity will make us be better with CFS/ME. I just thought to mention that I consider sweating in a sauna one of two activities in my whole 11 years I got used to with practise and benefited and I chose to do it. I chose it over even some friendships, tv...everything but my family. (The other activities was weightlifting about 6 years later). Definitely deal with heat and cold in our own way though but I thought my story might offer some contrasting perspectives in the discussion. -
Thanks for sharing that information with us, Belinda!
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@bel Heat is my nemesis because of autonomic dysfunction and not being able to perspire normally. But once when I had a fever (maybe a touch of the flu) I broke a sweat and felt better. I think using one of those home saunas has helped quite a few people.
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@Aur Thanks for sharing that with us!
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@donnamarie No worries. I feel it's an important topic for discussion.
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@donnamarie Before I got the flu that began my ME, I had an episode just shy of heat stroke. It seems to be called heat intolerance. It was during a heat wave and I drove with some friends to a store where we thought the air con would be working. It wasn't. Suffice it to say that everything left my body from both ends. Once I got home, they threw me in a cold shower and I finished the vomiting, etc. So it's nothing to play around with, in my opinion. You have to kind of create your own perspiration if you don't perspire normally. I have no problems with cold weather unless my clothes are wet and it is below freezing. People with MS have similar problems with heat intolerance.
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Iron deficiency is quite common (especially in people who menstruate, vegetarians, and anyone with digestive issues that make it hard to eat meat and/or absorb nutrients). I recently saw something that said poor iron absorption is common in POTS as well.
As it's known to cause fatigue, it's not surprising that iron levels are often one of the first things investigated in our condition.
How many of you have had the entirety of your disease attributed to iron deficiency? Do you think it plays any role? If you've had low iron levels, did you manage to get them back up to normal?
Oral iron supplements can be hard on the stomach and IV iron infusions can have side effects remarkably similar to our existing symptoms. I've had low iron for much longer than I've had ME/CFS, but had trouble tolerating supplements and am terrified of infusions. I'm trying again now a variety of different supplements slowly building up the dosage, and going ok, but who knows if I'm absorbing them. I wonder how long I should wait before getting my levels checked again.
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@river Interesting post: Having blood tests for iron levels, can show it's ok but that's all relative to the time of the test. If I suspect or feel I am lacking in iron, I do try to eat iron enriched foods. I tend to feel a little better but only after a day or so. Juggling and balancing nutrient levels for a body with ME/CFS is always hit or miss with me. I haven't had ME/CFS attributed to iron deficiency but I had a hemochromatosis gene test done. It is a mutation in my family. One family member has the mutation and stores too much iron, ( has to give blood to get rid of the excess iron) I have the two faulty genes for hemochromatosis but a different type. I am a carrier of the faulty gene and my iron levels can fluctuate dramatically. Another family member cannot store or maintain iron levels and has regular infusions. If I can recall, in the very early days of my illness, I was often told that my iron levels must be low, or it is my thyroid. Testing soon dismissed these as possible causes along with a barrage of other tests. I'm wondering if there is any research on iron deficiency in ME/CFS patients. It would be interesting to see if there is data to support a correlation. Emphasis here on correlation, not cause. (effect not cause). How do we distinguish whether iron deficiency can trigger or exasperate PEM? Is it even related? soooo many questions ...
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Just a quick (and very sorry if this is stating the obvious, but just-in-case, better safer than sorry and all that) mention that iron is one of those things that I'm fairly sure it's possible to have too much of as well (and that the consequences of having too much can be quite serious), so if people are taking iron supplements it might be an idea to make sure they don't overdo it.
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This is what they call it when you have low T3, high rT3 but otherwise normal thyroid results. Wondering if anyone has had this particular anomaly turn up in blood results. It's possibly the only objective evidence I've ever gotten from medical investigations that I am in fact extremely ill.
