How Do You Handle the Summer?

July 4, 2013

by Jody Smith

pixabay-sunFor most years in the last two decades, summer has been my best season. My serious crashes always took place between September and April. And every year, beginning in May, I would begin my slow climb back toward something resembling health.

Laying outside in the sun for 20 minutes or so in the mornings seemed to make a difference surprisingly quickly. Being able to go for walks, being out in the summer weather, increased my mood and seemed to be one of the factors decreasing my ME/CFS symptoms.
 
By mid-summer I usually had advanced to being a dull/normal. Not bursting with energy, but I was no longer a staggering, shaking vegetable either. By the end of the summer I would usually be able to go for half hour walks and enjoy basic activities every day. My cognitive abilities also improved during these months.

By the end of the summer I would be telling myself that it seemed like I was getting better. Nobody was more shocked than I when every September I would find my energy diminished, my mental faculties shutting down and my physical stamina trampled by parasthesia and muscle weakness once more.

Vitamin D

I cannot prove that my discovery of vitamin D in the fall of 2007 prevented the major crashes that first winter, and most winters thereafter. It is the only thing that changed though and I am convinced that vitamin D has been a superhero in my life.

I take a lot of it, 10,000 IUs a day, year round. This is not to say that you should be doing this, everyone’s vitamin D needs are unique to them. I tried taking less at a time and found that the fewer tablets I took, the more my ME/CFS symptoms would re-emerge.
 
All this makes me think that my summer resurgences were and are linked with my own personal tendency to be vitamin D deficient. Do I know this for sure? No, I don’t. But I like feeling better, and I prefer that this not be limited to a few months in the summer.

Photophobia

But summer is not a panacea for everyone with ME/CFS. And in fact, there were a few summers when I couldn’t handle being in the full-bore sunlight. I learned later this could be called photophobia, which is not a fear of anything, rather it is a physical intolerance for bright or even moderate light. If I was outside for more than a few minutes, I would experience an amazing visual grab bag of symptoms.
 
What I was seeing was washed with a white light, rendering my vision blurry. I’d see quick little light zaps, and floaters of light in my line of vision. It was hard to track or focus my eyes on anything. This situation would often trigger renewed vertigo, and left me with a cognitive lag, as my brain tried to process what I was trying to see.

The only remedy was to get into a darker location, and not try to do anything till the phenomenon would pass. Sometimes it would correct itself within 20 minutes, other times the after-effects stayed with me through much of the day. Those summers, I avoided being outside very long.

Jesse

My son Jesse, 23, has been sick for seven years. He spent the first of those years in a darkened room, away from the light. When I persuaded him to try my method of lying in the sun, it made him worse. He would feel sick and light-headed afterward, and his vision was negatively affected. So that was a lesson for me.
 
He has gradually been improving the last couple of years, and is now able to spend some time in the sunshine. But he would never willingly spend a day outside in the sun because too much of it is still a bad thing for him. The heat makes him feel unwell, rather than revitalized as it does for me.

He prefers to be cold, while my muscles start to ache when the temperatures are too cool. I need temperatures to be in the low 70s, so no keeping the thermostat turned down in the winter to save money for me. He lives in this warm environment by keeping his window open a good deal of the winter, and a fan on in his room when it’s too cold out for open windows.
 
Some of us embrace the return of the sun each summer. Some of us dread its effects.
 
What is summer like for you?

Further Reading 

Visual Symptoms
http://www.neurosymptoms.org/#/visual-symptoms/4539525685
 
Visual Dysfunction in Chronic Fatigue Syndrome
http://www.cfids.org/archives/2001rr/2001-rr3-article02.asp
 
When Chronic Fatigue Syndrome Harms Vision
http://www.everydayhealth.com/chronic-fatigue-syndrome/vision-problems.aspx

 

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58 comments

{ 58 comments… read them below or add one }

HowToEscape? July 4, 2013 at 2:35 pm

Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
I'd love to be outside more, but I have to consider the consequences.

HowToEscape? July 4, 2013 at 2:36 pm

Er, that was poorly written. By 'afterwards' I meant after becoming sick and also after heat exposure. Two logically separated elements collapsed into one sentence.

Sushi July 4, 2013 at 3:03 pm

HowToEscape?

Ever try a cooling vest? It saves me in the summer. ;)

Sushi

SOC July 4, 2013 at 3:23 pm
HowToEscape?

Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
I'd love to be outside more, but I have to consider the consequences.

My experience is similar, although I also get a rash from any sun exposure. I'd love to be out in the summer, but the consequences aren't worth it. I tend to dive from one air-conditioned space to another.

Now that I'm feeling a lot better, I'm experimenting with the heat and sun to see if I'm less sensitive now. My short experiments with being out in the heat suggest that that symptom is less severe. I haven't tried exposing my skin to the sun yet. Now that I finally don't have red pinpoint specks all over my arms, I'm not eager to risk a rash right away. Maybe next month. ;)

PNR2008 July 4, 2013 at 3:36 pm

I can go out on overcast days that aren't too humid but the last 5yrs, I'm always better after 7pm in the summer. Even though I love the outdoors and love living on porch and patio, the summer months zap me of any energy. I usually ride the bike with dog or walk right before dusk. I actually feel faint in heat and lie on wicker swing or loveseat with my feet up. It's the most normal acting thing I do. People go past and say "that's the life", I laugh and think if you only knew. Most of the time I'm sorry to say I'm in A/C and it getting worse every year.

Jody July 4, 2013 at 5:56 pm
HowToEscape?

Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
I'd love to be outside more, but I have to consider the consequences.

HowToEscape,

I feel your pain. Used to be the same way. Perhaps in time this will change for you as well.

Jody July 4, 2013 at 5:57 pm
SOC

My experience is similar, although I also get a rash from any sun exposure. I'd love to be out in the summer, but the consequences aren't worth it. I tend to dive from one air-conditioned space to another.

Now that I'm feeling a lot better, I'm experimenting with the heat and sun to see if I'm less sensitive now. My short experiments with being out in the heat suggest that that symptom is less severe. I haven't tried exposing my skin to the sun yet. Now that I finally don't have red pinpoint specks all over my arms, I'm not eager to risk a rash right away. Maybe next month. ;)

SOC,

Sounds like some of the symptoms I've read about for photosensitivity. My understanding is that this is a bit different from "mere" photophobia. Photosensitivity can cause the symptoms on your skin that you describe. It is known to happen to many people with ME/CFS.

Jody July 4, 2013 at 5:59 pm
PNR2008

I can go out on overcast days that aren't too humid but the last 5yrs, I'm always better after 7pm in the summer. Even though I love the outdoors and love living on porch and patio, the summer months zap me of any energy. I usually ride the bike with dog or walk right before dusk. I actually feel faint in heat and lie on wicker swing or loveseat with my feet up. It's the most normal acting thing I do. People go past and say "that's the life", I laugh and think if you only knew. Most of the time I'm sorry to say I'm in A/C and it getting worse every year.

PNR2008,

I understand. It is a miserable thing to deal with. I can relate to people thinking I was "lucky" in my "laidback" lifestyle. To some casual observers I must have seemed like I was just on vacation all the time. If that were the case, I had the worst vacations of anyone I knew.

HowToEscape? July 4, 2013 at 6:13 pm
Sushi

HowToEscape?

Ever try a cooling vest? It saves me in the summer. ;)

Sushi

Never thought of that! I thought that was exotic gear only used by swat teams and such. You can buy them? How much, and how long can they work at a stretch?

Sushi July 4, 2013 at 6:19 pm
HowToEscape?

Never thought of that! I thought that was exotic gear only used by swat teams and such. You can buy them? How much, and how long can they work at a stretch?

Look here: http://activemsers.org/gear/testcoolingvests.html

An MS site tests different ones and also offers a discount. Quite a few of us here have used them. I have the Arctic Heat though there are better ones now that can last about 4 hours.

Sushi

rosie26 July 4, 2013 at 7:47 pm

I love summer, where I live the temperature usually only goes as high as 30degrees C, it's mainly in the 20- 28 range.
I find though that I have to wear shorts, as being overheated can be a problem. But found the shorts work well with that problem. I don't have a problem with the photosensitivity anymore, thank goodness!

I can't handle the cold in winter, my ME always deteriorates . I think because I shiver and shake a lot, and takes a lot of energy. Also the cold stirs up my sinus symptoms and I feel weaker overall. I get feelings of dread as winter approaches.

Jody July 4, 2013 at 7:52 pm
rosie26

I love summer, where I live the temperature usually only goes as high as 30degrees C, it's mainly in the 20- 28 range.
I find though that I have to wear shorts, as being overheated can be a problem. But found the shorts work well with that problem. I don't have a problem with the photosensitivity anymore, thank goodness!

I can't handle the cold in winter, my ME always deteriorates . I think because I shiver and shake a lot, and takes a lot of energy. Also the cold stirs up my sinus symptoms and I feel weaker overall. I get feelings of dread as winter approaches.

Rosie26,

That sounds alot like me. I don't handle our hot humid weather like I did before I was sick, but it is preferable to what cold does to me. I feel cold before anybody around me does, and am prone to muscle pain, tendinitis, swelling from inflammation — just from being a bit cold. Our floors are never quite warm, except for a month or so in the middle of the summer. And if I go barefoot in the house most of the year, I will end up with pain in my feet, swelling and may be rendered unable to walk for weeks on end. So even when it's 90 degrees outside, I make sure to wear sandals to protect my feet from the "cold" floor.

rosie26 July 4, 2013 at 8:05 pm

Jody

It doesn't seem fair that you only get one month or so of being able to walk comfortably in bare feet in the house. The cold causes inflammation to start up alright, it feels like the nerves/neural pain starts intensifying.

If I had a big house, and the money, I'd invite you here to spend the summer !! :) :)

Jody July 4, 2013 at 8:26 pm
rosie26

Jody

It doesn't seem fair that you only get one month or so of being able to walk comfortably in bare feet in the house. The cold causes inflammation to start up alright, it feels like the nerves/neural pain starts intensifying.

If I had a big house, and the money, I'd invite you here to spend the summer !! :) :)

lol

What a great offer. What part of the country do you live in? :D

Misfit Toy July 4, 2013 at 8:27 pm

For years, summer was a bad time for me. I dreaded it. It's like the same as winter; you can't go out without dying of humidity and heat…just as winter you can't go out without feeling ill from the cold. So, for a long time I preferred winter and liked the quiet that it brought. People are hibernating and that fits in with my CFS.

Then, suddenly I started having SAD during the winter. Winter started bringing me to my knees, I would catch everything that came around, etc. Also, I have extremely low vitamin D. I feel so depressed now in the winter and I feel like my CFS just caves.

Today, I went to a pool. I do this as much as this illness allows because I feel so much better after a day outside and with the sun hitting my face and body. Plus, the pool helps with my pain. But even without the pool, I love to be outside. Of course, if it's too hot, that's not going to happen but even just seeing the beautiful sunshine outside just brightens my mood so much.

I now want to move where there is sun all year round and it's warmer. Where as before, I wanted to live where I could be close to mountains, freezing temps and snow.

rosie26 July 4, 2013 at 8:31 pm

Jody

New Zealand x ( need to win a lotto) ! :)

Jody July 4, 2013 at 8:51 pm
Misfit Toy

For years, summer was a bad time for me. I dreaded it. It's like the same as winter; you can't go out without dying of humidity and heat…just as winter you can't go out without feeling ill from the cold. So, for a long time I preferred winter and liked the quiet that it brought. People are hibernating and that fits in with my CFS.

Then, suddenly I started having SAD during the winter. Winter started bringing me to my knees, I would catch everything that came around, etc. Also, I have extremely low vitamin D. I feel so depressed now in the winter and I feel like my CFS just caves.

Today, I went to a pool. I do this as much as this illness allows because I feel so much better after a day outside and with the sun hitting my face and body. Plus, the pool helps with my pain. But even without the pool, I love to be outside. Of course, if it's too hot, that's not going to happen but even just seeing the beautiful sunshine outside just brightens my mood so much.

I now want to move where there is sun all year round and it's warmer. Where as before, I wanted to live where I could be close to mountains, freezing temps and snow.

Misfit Toy,

I'd crash like clockwork every fall … weather was still summer weather, but once the days started getting a bit shorter … I'd start to slide.

The pool sounds lovely, soothing. I think all of us who can't take the extremes of temperature should live somewhere where it's 72 degrees all year, with low humidity. And plenty of pools.:)

Jody July 4, 2013 at 8:52 pm
rosie26

Jody

New Zealand x ( need to win a lotto) ! :)

New Zealand? I've always wanted to go there.:)

SOC July 4, 2013 at 8:57 pm

I had SAD, too, for a while. High dose vitamin D helped me a lot — liquid under the tongue, not pills. I still take it because I don't get sun on my skin these days.

Jody July 4, 2013 at 8:58 pm
SOC

I had SAD, too, for a while. High dose vitamin D helped me a lot — liquid under the tongue, not pills. I still take it because I don't get sun on my skin these days.

SOC.

I don't know where I'd be without vitamin D supplements. Well, I do have a fair idea where I'd be. On my face, 9 months of the year.

rosie26 July 4, 2013 at 9:00 pm

Jody

ha ha well you never know, you might make it one day :)

Sean July 4, 2013 at 9:09 pm

Hot humid weather is the worst for me. Which makes living in the monsoon tropics a problem. Hence air conditioning for about 6 months of the year.

Cool-warm, dry-ish weather is best for me.

I get SAD during the long overcast monsoon spells during the rainy season. Going to try light therapy next season, I think.

rosie26 July 4, 2013 at 9:27 pm

Misfit Toy

I have struggled with SAD too, big time. Hate being shut up indoors all the time.

Even in my severe years I would feebly go for walks outside, it helped to have someone walk with me. It made me feel more secure, as so dizzy and out of balance. I appreciate flowers a lot more now, they do cheer. x

Misfit Toy July 4, 2013 at 10:40 pm

SAD is a hard one. The lamp didn't work for me. It has to be sun. In your face, sun. The light for SAD actually hurt my eyes and I felt anxious. It's not the same. I am on 5,000 IU of Vitamin D. Perhaps I need to go to 10,000. I know my doc keeps saying how low it is. Again, hormones and the beginning of the change. ; /

Jody July 5, 2013 at 10:28 am
Sean

Hot humid weather is the worst for me. Which makes living in the monsoon tropics a problem. Hence air conditioning for about 6 months of the year.

Cool-warm, dry-ish weather is best for me.

I get SAD during the long overcast monsoon spells during the rainy season. Going to try light therapy next season, I think.

Sean,

I can't imagine what it would be like handling tropical weather with this thing.

I have read about light therapy, and apparently some people have good results from it. Good luck!

Jody July 5, 2013 at 10:31 am
Misfit Toy

SAD is a hard one. The lamp didn't work for me. It has to be sun. In your face, sun. The light for SAD actually hurt my eyes and I felt anxious. It's not the same. I am on 5,000 IU of Vitamin D. Perhaps I need to go to 10,000. I know my doc keeps saying how low it is. Again, hormones and the beginning of the change. ; /

Misfit Toy,

I started out on 5,000 IUs and found that it helped somewhat. I increased by 1,000 IUs at a time, and for me, 8,000 IUs helped alot. But 10,000 made the biggest difference. If your doctor is telling you it's low, then an increase might make a real difference.

peggy-sue July 5, 2013 at 10:56 am

What is summer?
What is air conditioning?
;)

Jody July 5, 2013 at 11:00 am
peggy-sue

What is summer?
What is air conditioning?
;)

Peggy-Sue,

I notice under your avatar, it says you're from Scotland. That being the case, perhaps no definition or description would help you to envision what summer is like. Or any reason to need air conditioning.:)

peggy-sue July 5, 2013 at 11:29 am

I've just been wondering Jody… it is good to find out what life is like from different perspectives though.
I've always believed strongly in cross-cultural research – the only way to exclude a cultural bias from a biological investigation. :lol:

Jody July 5, 2013 at 11:35 am
peggy-sue

I've just been wondering Jody… it is good to find out what life is like from different perspectives though.
I've always believed strongly in cross-cultural research – the only way to exclude a cultural bias from a biological investigation. :lol:

Peggy-Sue,

You've found a good place to do that, here. In this thread alone, we've got people in the tropics, in Arizona and New Mexico, in southwestern Ontario, and New Zealand (their weather is VERY different during our summer) just looking at people's avators in the thread. None of them are indicating a climate I'd like to live in. Give me gentle temps without humidity anytime.

My mother-in-law was from Scotland, I've always been fascinated with the place. Not sure I could hack the weather though.

peggy-sue July 5, 2013 at 12:24 pm

This is the most cross-cultural forum I'm on Jody.
(but I do have very limited "existence" in a microscopicically small section of the internet).

(shoving my research-y hat on again)
One has to remember that some things do co-evolve, they still cannot be considered to be proven biological on the basis of being in all cultures.
There's been an interesting historical programme on here, about all the culture "bequeathed to humanity" by the ancient Greeks. The narrator seems to think they, and they alone are responsible for theatre. The Chinese invented theatre too.

Jody, it's not the weather you need to worry about here. It's the midges. Thankfully, mostly on the other side from me!
ps. Did you know that Canada and Scotland belong to the same original land mass?

MeSci July 5, 2013 at 12:41 pm

I'm a bit concerned about one of the links given in the initial article – neurosymptoms.org. This is a psychoquackery site that I referred to in another recent posting.

Re summer, it makes me feel better as long as it isn't too hot. I bought a UVB lamp last year for winter use, as there is evidence that we absorb nutrients poorly from the gut, but I suspect that it wasn't enough to combat the lack of real sunshine. I don't know whether feeling worse in the winter is due to lack of Vitamin D for me – maybe. I don't get actual SAD, just don't feel as good physically. I wouldn't be surprised if sunshine gives us some as-yet-undiscovered benefits as well as Vitamin D. I certainly find that it lifts my mood, which isn't too bad generally but a bit better is welcome!

Hot weather saps my strength, makes me sweat buckets and my legs go weak and heavy.

peggy-sue July 5, 2013 at 1:23 pm

I get everything in your last statement too, MeSci. Yuk, isn't it?

You need to remember that it takes a whole load of effort for our bodies just to keep going and maintain homeostasis, including our body temperature. (we are known to have trouble with temperature regulation).

(80% of the calories consumed by a fit and well person who is of consistent "normal" weight goes to keep the body going – they only use 20% on daily activities, including keeping fit.)

So for us, extremes of temperature put a huge strain on our basic functioning.

Temperature seems to be the only area in life where I am actually fond of being temperate….:rolleyes:

Jody July 5, 2013 at 2:02 pm
peggy-sue

This is the most cross-cultural forum I'm on Jody.
(but I do have very limited "existence" in a microscopicically small section of the internet).

(shoving my research-y hat on again)
One has to remember that some things do co-evolve, they still cannot be considered to be proven biological on the basis of being in all cultures.
There's been an interesting historical programme on here, about all the culture "bequeathed to humanity" by the ancient Greeks. The narrator seems to think they, and they alone are responsible for theatre. The Chinese invented theatre too.

Jody, it's not the weather you need to worry about here. It's the midges. Thankfully, mostly on the other side from me!
ps. Did you know that Canada and Scotland belong to the same original land mass?

Peggy-Sue,

Midges! I have heard of them. They sound awful.

I didn't know that about the original land mass. I just know you're alot further north than where I am in Ontario.

rosie26 July 5, 2013 at 2:20 pm

How are those of you coping with the heat in America ? I heard on the news about 3/4 nights ago about the terrible fires I think it was Nevada ? I don't know how you cope with those extreme temperatures.

The closest I have experienced is 45 degrees C. And that was about 35 years ago on my OE (overseas experience) in Australia. I was so hot, my feet were burning, skin felt like it was burning. I couldn't get off to sleep and had to go and wrap wet towels around me. But I can't believe I had to go to those measures. Wet towels !!! In bed !!

HowToEscape? July 5, 2013 at 8:40 pm
Sushi

Look here: http://activemsers.org/gear/testcoolingvests.html

An MS site tests different ones and also offers a discount. Quite a few of us here have used them. I have the Arctic Heat though there are better ones now that can last about 4 hours.

Sushi

Thanks, I'm going to try that asap!

Helle Nielsen July 6, 2013 at 3:21 pm

I also feel a lot better in the summer, when I get a tan. But since vitamin D didn't help me, I wondered if it could be something else. I think it could be immune system regulation through Photoimmunology: http://followmeindenmark.blogspot.dk/2012/11/photoimmunology.html

Desdinova July 6, 2013 at 5:20 pm

For me the Heat of summer makes my symptoms intensify. Living in the South eastern US I used to love the summer used to love the heat. Folks used to ask how I could stand it being so hot with no air condition and often no fans turned on. I miss things being like that. Not to mention my power bill being a lot less.

GracieJ July 6, 2013 at 8:57 pm

Summer used to be my enemy, for many years. I just wilted with the heat. Air conditioning meant more symptoms, probably with the boost in mold, unknown to me. Swimming pools meant chlorine, which wore me out, so forget swimming. I absolutely dreaded the end of May here in Utah, knowing I would not feel too good until about October. On the flip side, my winters were just as hard. If I got cold, I stayed cold… took hours to stop shivering. I often became ill around Thanksgiving or Christmas and stayed ill with colds/bronchitis then migraines, sometimes well into July…

It's a miracle we survive for years like this!

Happy to report — a full summer last summer of NO HEAT INTOLERANCE whatsoever, and this year is looking the same. Love it!

rosie26 July 6, 2013 at 9:11 pm

GracieJ

Enjoy summer, Gracie, put your shorts on if you do start to feel hot. :) x

Eucalypta July 7, 2013 at 4:36 am

I HATE the summer with a passion.

I used to be a beach girl when I was 17. Than I became ill and with that heat intolerance, photosensitivity which is different from photo phobia. In photosensitivity the immune system sees the rays as invaders and attacks them. Causing an autoimmune reaction leaving me violently ill.
If the sun is out I only can go and sit in the yard when the sun has go down. I'm mostly bedridden now but the years I was still able to walk it was tough. And still is. I send hubby away to go to the park swimming with the dogs and have fun. But the ugly green eyed monster sometimes rears his head. Luckily no one can hear me scream at that point. :-)

I'm a fall and winter gal. I love the crisp air the beautiful colors of the leaves. On a good day I can sit on my front porch. Ahhhhh, can't wait! :-)

MeSci July 8, 2013 at 6:43 am
Helle Nielsen

I also feel a lot better in the summer, when I get a tan. But since vitamin D didn't help me, I wondered if it could be something else. I think it could be immune system regulation through Photoimmunology: http://followmeindenmark.blogspot.dk/2012/11/photoimmunology.html

That's very interesting, Helle – I hadn't heard of photoimmunology. Shame about all the poor mice though…

MeSci July 8, 2013 at 11:18 am

I walked into town today and the weather is too hot for me. When it's like this, the slightest exertion brings me out in a sweat and exhausts me. It seems consistent with producing heat instead of ATP, which can happen if there is uncoupling of ATP production from oxidative phosphorylation.

Wondering whether this could be related to acidosis, I just did a search and found this paper which looks very interesting and potentially relevant:

http://jasn.asnjournals.org/content/12/suppl_1/S15.full

Firestormm July 9, 2013 at 4:18 am

It is like a heatwave in Cornwall this week! Reminded me how I can no longer tolerate it. Spent Sunday afternoon with my niece and nephew and their parents and my own, sat mainly in the garden under a shade. After a couple of hours they drove me home. It was too much. Yesterday was crap. All day was unproductive. Today isn't much better.

Is it all down to the heat? Well I don't know. Am carrying extra baggage these days; but hot temperatures have always caused me to 'flare' since getting this wonderful diagnosis whereas before they definitely did not. Also, I am 43 years ancient now compared to 29 when I began my journey.

I think heat is exhausting. I think humidity is worse. I function far better in the cold or cool. Temperature regulation is of course a common issue associated with our condition; and excessive sweating especially – most noticeably – at night: is typical for me and disgusting.

At least I can now tolerate the sun's brightness. I can draw back my curtains. So I am pleased so see the sun at least :)

MeSci July 9, 2013 at 4:58 am
Firestormm

Is it all down to the heat? Well I don't know. Am carrying extra baggage these days; but hot temperatures have always caused me to 'flare' since getting this wonderful diagnosis whereas before they definitely did not. Also, I am 43 years ancient now compared to 29 when I began my journey.

If 43 is ancient I must be prehistoric! :lol:

Despite my venerable age, I lost my 'extra baggage' with ease and improved many symptoms dramatically with my gluten-free, low-sugar/low-grain diet.

I trust you have tried this, young man. If not, why not?!:D

Firestormm July 9, 2013 at 5:06 am

MeSci the flippant 'male on a safa beligerant' response is: I have lost too much already; did the diet crap; and can't be arsed to lose anymore of especially the small things that remain. I don't eat much as it is. My extra pounds are due to lack of ability to exercise. Nothing more. And with knobs on :D

MeSci July 9, 2013 at 7:07 am
Firestormm

MeSci the flippant 'male on a safa beligerant' response is: I have lost too much already; did the diet crap; and can't be arsed to lose anymore of especially the small things that remain. I don't eat much as it is. My extra pounds are due to lack of ability to exercise. Nothing more. And with knobs on :D

I think you're wrong, and I bet I recover before you. :p

Shell July 10, 2013 at 1:14 am

I have the body of a spoilt brat. If it gets too cold it turns purple and blue like a toddler having a major tantrum and refuses to function. It insists on overly dramatic uncontrollable shivering just to make a point.
Then it gets warmer and the spoilt brat body behaves reasonably well – with occasional attacks of refusing to breathe just to keep me on my toes.
Then it get's too hot and it likes to get flaky and have over dramatic black outs and battles with gravity. Then for some completely unknown reason it will go from way too hot and complaining about the heat to shivering in the same heat.

A lot of the extra weight we folks lug around is drug fat; I've been on enough steroids over the years to make me the size of an elephant and with added amitrip it's a wonder I'm not a whale.

Firestormm July 10, 2013 at 1:52 am

Many of my forebears would take a jolly off to Egypt for the winter months to avoid the English weather. I'd love to do that – or did.

Now I think the heat would do for me. I last had a trip to Turkey and that was tough going, but tougher than hot dry heat is hot humidity. Now that IS energy sapping.

I often wonder when on the forum and checking out where others hail from how those who live in the southern states manage with the humidity. I have been to Florida twice when well and I still remember that unique damp heat. Phew!

Looking back I reckon I have sweated 10 years of even my current body weight (OK I am not huge – just bordering on overweight according to the quack but it's too much in relation to historic norms and I hate it).

I also hate waking wrapped in wet sheets. Not a very nice way to start the day – and that's regardless of the external temperature.

I used to tote around a large fan wherever I lived. Fortunately, I seem able to manage better in my current old house with it's nice thick walls. Stays pretty cool most of the day.

Unfortunately, it means when the weather is like this I tend to hibernate and venture out even less than I am normally able; or at least I am far more cautious – early morning walks and late evening soirees :)

MeSci July 10, 2013 at 3:20 am
Shell

I have the body of a spoilt brat. If it gets too cold it turns purple and blue like a toddler having a major tantrum and refuses to function. It insists on overly dramatic uncontrollable shivering just to make a point.
Then it gets warmer and the spoilt brat body behaves reasonably well – with occasional attacks of refusing to breathe just to keep me on my toes.
Then it get's too hot and it likes to get flaky and have over dramatic black outs and battles with gravity. Then for some completely unknown reason it will go from way too hot and complaining about the heat to shivering in the same heat.

Great description! :)

Shell

A lot of the extra weight we folks lug around is drug fat; I've been on enough steroids over the years to make me the size of an elephant and with added amitrip it's a wonder I'm not a whale.

I have never taken any drugs specifically for ME, and was only on desmopressin and an ACE inhibitor when I put on a lot of weight. I was under a lot of stress though, and eating a lot of carbs. I'm still on those drugs, but lost the excess weight after cutting out gluten and going low-carb. It was so easy. No hunger. The fat loss and muscle gain have made it much easier to do everything, improving my balance, strength and co-ordination.

valentinelynx July 14, 2013 at 11:35 pm

Used to love heat. Especially hot nights. But now heat kills me. And for the past 4 years we've been living in Arizona! Before that, we lived at 7,000 feet near Park City, UT, where it snowed 10 months out of the year, and I loved it! Turns out that when the mercury drops, it makes me want to be more active. A couple winters ago we had a hard freeze (15 deg F) here in Tucson, and I really wanted to go out and walk (and did and enjoyed it). In the summer, it rarely drops much below 90 even at night, and walks, which I occasionally take at night, just don't feel good.

I also don't tolerate sun well. I tend to get a rash instead of burning, and my eyes squint and run. No, Arizona is not the best place for me!

Rrrr July 19, 2013 at 9:23 am

Recommended: cooling vests for ME/CFS patients

We are having a heatwave on the east coast of the USA. And we don't have air conditioning! So I want to recommend something for those who can't tolerate the heat, like me. I just bought this "cooling vest" and love it. It really works. It comes with ice packs that you freeze and then slip into these pockets all over the vest. Cost $119. Well worth it.
http://www.polarproducts.com/polarshop/pc/Kool-Max®-Cooling-c14.htm

(I have no financial interest in this product, I just found that it works for me and thought others might like it, too.)

Rrrr July 19, 2013 at 9:34 am

oh, i see sushi already recommended cooling vests on page 1 of this thread (she is always 10 steps ahead of me!!!). duh. anyway, the one i bought (see above link) is a bit cheaper than some others i found, and seems to be working well. i'm wearing it as i type this. and it is a sweltering 92 degrees already here, and it is still morning! yikes. expected to get up to 100 today. very very rare for here.

Rrrr July 19, 2013 at 10:27 am

A FRIEND JUST SENT ME THIS ADDITIONAL NOTE:

Hi, I don't know if you get the xxx newsletters, but xxx was promoting a neckscarf variant of this. I did some research and got this one at Amazon for $10.10:
http://www.amazon.com/gp/product/B001B5I57I/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1

It's terrific! Yesterday I wore it to get to and from xxxxx, and it really made a difference! You just wet it and it holds a ton of moisture without dripping and stays damp and cool for a couple hours.

The people who made your vest also make a neckscarf with cooling packs for $27.95:
http://www.amazon.com/gp/product/B001B5I57I/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1

These might be good options to let people know about. The vest is insanely out of my price range, and I suspect that applies to many others as well.

Oh, and it's also recommended for OI patients.

Little Bluestem July 20, 2013 at 1:48 am

My best seasons are spring and fall. Winter is generally worse than summer. When it is really hot, I say indoors as much as I can. I have a special 'skimpy' wardrobe that I wear only in my apartment. I use the refreezable ice packs for sprains and such to help keep me cool.

I have two air conditioner that are not meant for as many square feet as my apartment is. They keep it liveable most of the the time. Right now is not that time. We have had hot weather for the past 4 days. I don't cook. I eat cold food, use the microwave and toaster, and get food out. My computer room is small. If I turn the air conditioner toward it, I am comfortable here.

Yesterday afternoon is was 90F in my living room and bedroom and 92F in my kitchen. Last night I put my (seldom used) exercise mat down in front of an air conditioner. I folded a couple of blankets on top of it, then added a sheet. It was still sort of hard, so I got a body pillow I do not like to use on the bed and found l liked it on my pallet. I slept there last night and will again tonight. The heat is supposed to break tomorrow, but it may take my solid brick building a few days to cool down.

MeSci July 20, 2013 at 2:21 am
Little Bluestem

My best seasons are spring and fall. Winter is generally worse than summer. When it is really hot, I say indoors as much as I can. I have a special 'skimpy' wardrobe that I wear only in my apartment. I use the refreezable ice packs for sprains and such to help keep me cool.

I have two air conditioner that are not meant for as many square feet as my apartment is. They keep it liveable most of the the time. Right now is not that time. We have had hot weather for the past 4 days. I don't cook. I eat cold food, use the microwave and toaster, and get food out. My computer room is small. If I turn the air conditioner toward it, I am comfortable here.

Yesterday afternoon is was 90F in my living room and bedroom and 92F in my kitchen. Last night I put my (seldom used) exercise mat down in front of an air conditioner. I folded a couple of blankets on top of it, then added a sheet. It was still sort of hard, so I got a body pillow I do not like to use on the bed and found l liked it on my pallet. I slept there last night and will again tonight. The heat is supposed to break tomorrow, but it may take my solid brick building a few days to cool down.

I'm sleeping in my (unfinished) conservatory for the first part of the night at the moment, as it's too hot upstairs until the early morning. It also saves having to drag myself upstairs when I'm feeling tired and weak. I'm usually feeling stronger after lying down for a few hours.

GracieJ July 21, 2013 at 8:29 am
MeSci

Despite my venerable age, I lost my 'extra baggage' with ease and improved many symptoms dramatically with my gluten-free, low-sugar/low-grain diet.

I wish my "extra baggage" would drop off on any diet. Just doesn't happen.

MeSci July 21, 2013 at 12:18 pm
GracieJ

I wish my "extra baggage" would drop off on any diet. Just doesn't happen.

Have you tried palaeo or low-carb or leaky-gut and/or gluten-free? They seem to work for a lot of people.

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