Blog Classic: June 22, 2010
It's sad that I now look at a change of seasons through the lens of "what symptoms I have to worry about now," but that's they way it goes with fibromyalgia and chronic fatigue syndrome. To stay on top of our symptoms, we need to anticipate the ones we can, and head them off as much as possible.
Summer has officially begun, and while it's unseasonably cool in my corner of the U.S., I know that's not the case for everyone. With temperatures rising, we need to be especially aware of and prepared for heat sensitivity.
Not all of us are heat sensitive, but among the people who took my poll in June 2009, about 20% are always hot, 25% fluctuate with the weather, and 40% fluctuate randomly. Nearly 1,300 people took the poll, and a whole 7 folks said they don't have temperature issues at all. Wow.
My biggest problem with heat is that my hands and feet puff up like crazy, ache, and refuse to cool down. The only thing that really helps is soaking them in cold water, so I spend a good bit of the summer sitting with my feet in the bathtub. Other overheating symptoms I get include a really red face, excessive sweat on my head, headaches, nausea, and dizziness. Like pretty much all of my symptom triggers, overheating can cause pain that ricochets around my abdomen.
That sounds crazy to anyone but us, but it's a real, medically recognized phenomenon. When heat (or cold) that doesn't actually damage your tissues causes pain, it's called thermal allodynia. You can learn more about allodynia here: 7 Types of Fibromyalgia Pain.
If I keep my body from getting overheated, though, I don't have those problems. It's not always possible to keep cool, but I've learned several things that can help. There's the basics -- lightweight natural fibers, staying hydrated, sticking to the shade -- but when those things aren't enough, cooling products can really help. About.com Multiple Sclerosis Guide Julie Stachowiak has put together a great list: Top 10 MS Cooling Products.
What are your heat-related symptoms? What helps relieve or prevent them? Do you have more problems with heat or cold? Leave your comments below!
Learn more or join the conversation!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
- Fibromyalgia Symptoms List
- Chronic Fatigue Syndrome Symptoms List
- Complementary/Alternative Treatments
Photo © Darryl Leniuk/Getty Images
A common misconception is that fibromyalgics feel fine once warmer weather comes. At least that’s what I often hear from people. In my neck of the woods, we have had sweltering humidity (above normal temps since March) and the weather has been very unsettled. Believe me, I can feel every thunderstorm coming. So, it’s hard to win; if it’s cloudy, it’s usually because of approaching rain, and if it’s sunny, the sun and heat are unrelenting. There probably is a greater temptation to overexert in the summer too.
I have a neat little thing called a chillo…or maybe chillow.
It is a water-bag with i suppose a sponge in it…you fill it with water, let the sponge absorb all the water it can, burp out the air and excess water, seal up and put inside your pillow case on top of your pillow. Absorbs the heat from your head and dissipates the heat slowly thru the sponge over night.
Works pretty well, but you need to top it off with water once a month. And they will not take a return for a torn chillow…so keep your cat away from it!
Do you know if and where you can still get those.
I sweat behind my neck at night.
Appreciate it.
Tammy
I sweat when I think about hot, even warm weather. Where can I get the water bag? Thanks so much!
Can you tell me where to get the water pillow? I wake up in the middle of the night with sweat running down my neck! I had my hair straightened with Keratin and it only lasted 3 weeks instead of 6 months because of the salt!!!
From Your Guide: Here’s a link to my review — Mediflow Waterbase Pillow. Just click on compare prices to see where you can buy it. I hope it works for you! ~Adrienne
I have been trying to get a cool vest….researched several types and decided on one that seems the best….only problem is that I have a couple of questions that I need to know in order to be able to place an order…..and though I have emailed the company twice, they cannot even be bothered in answering
so now I guess I have to figure out a different one to go with…..am really not happy about this, though – cannot afford the vests in the first place, but really, really need one ( I pass out when overheated, as well as getting other symptom flares)
so anyway, if someone is thinking about spending the type of money they want for a vest, you would think that they would at least answer their email
terrible service from cool sport
I’d say I have more trouble with the cold than the heat. I think I generally have more trouble with the cold because I live in Canada where it’s cold for most of the year.
In the mid-to-late fall, winter, and spring, I have to wear layers and socks, sometimes several pairs. I have to wear a wool hat, even indoors and especially to bed, or else too much head escapes from my body. For 9 months out of the year, I’m chronically cold. And when I have been going too hard and I finally run out of energy altogether, I get this horrible internal chill that doesn’t go away until I give my body some time to regenerate a bit of energy.
Once we finally reach summer (often in July!) I’m finally warm from head to toe, and it’s glorious! But, it’s glorious only if it’s within a certain very narrow temperature range. Above that, and my hands and feet swell up and ache and make walking even more difficult than it already is, and it’s even worse if it’s humid. I also can’t seem to get cool no matter what I do so I get the headaches.
I’m pretty sure there are other things that happen depending on the weather fronts, but I haven’t been able to figure the patterns yet.
I thought I was crazy!! I didn’t know others felt heat as pain too! I kept telling my husband and kids, IT IS NOT A HOT FLASH!! I just become so very hot and when I do the heat I feel is so overwhelming, wipes me out completely and IT HURTS!! I don’t have the same problem with cold. It bothers me some, but NOTHING like heat! THANK YOU FOR LETTING ME KNOW I’M NOT CRAZY!! Funny, my doctor has NEVER told me about this!
I have used the Chillow and found it helpful. Read directions before filling with the water or using. Some people use for the head,some use for feet etc. I bought through the medco store from United Health Care. drugstore.com also sells this product. It comes in various sizes.
Thank you Rhonda. I will check out the website.
My problem is with heat and cold.. but heat is harder to deal with. I try to make sure the car is in the shade ahead of time when I need to go someplace. I get severe headache after breathing hot air even for 5 minutes and then diarrhea.My thinking is also affected by getting hot. We have had many 102′ days this year.
Our house air conditioning was out for few hours
before repair. I put on some wet socks and wore
my plastic yard shoes. I dunked my head in water to wet my hair. A wet towel helped also by draping it around my neck and shoulders. I am retired and can do some of these things at will now.
I have had a major problem with heat all of my life. Have suffered heat stroke and have a naturally warm meatbolism anyway. I am what is called a high pitta fire type in Ayurvedic medicine. I always try and avoid extreme heat and where possible get my exercise at night walking on the beach and in nature.
Being menopausal it is often difficult to tell what type of warmth is what! I do sleep with a thermometer and often have one of those small gel freezer packs on my head.
In Indian medicine there are foods which have a cooling effect and I suggest taking in some of those.
Winter is a beautiful time for me and I always have better energy levels then. I have found that if I let myself dress in short sleeves and cooler than appropriate clothes that the chill factor greatly improves my cfs.
Summer, with the extreme heat really kicks in my fibro symptoms, as does the extreme cold in the winter time. It is safe to say that the changes in the atmosphere have a lot to do with the way a lot of us feel in these particular seasons. I have found nothing to help ease the pain and fatigue. Spring and Fall are what keep me going!!
Make sure to sleep on a silk or satin pillowcase. Silk preferably because it is hypo allergenic & anti-fungal. EssenceofSilk.com has alot of info on it!
Non-lethal Biological Weapons causing Fibromyalgia & Chronic Fatigue Syndrome Free documentaries linked into the New video link as well as peer reviewed medical journal articles posted in the “Treatment Considerations” section at the Institute of Molecular Medicine http://www.immed.org
Garth Nicolson PhD has written and published hundreds of
peer reviewed medical journal articles In this posted video
he states that the medical institutions have not taught
doctors about infectious agents (such as mycoplasma’s) for
decades. And that he know the curriculum well because he
has taught it to doctors for decades.
Mention is also made of “Project Paper Clip”.
Also recommend this free documentary>
New Emerging Infections:
Their Development, Testing and Resulting
Chronic Illnesses, with Garth Nicolson Ph.D.
By Snowshoe Films, Documentary about
non-lethal biological weapons known as
“Incapacitating Agents”. Their development
and association with numerous chronic illness
and the interactions with toxic chemicals,
radiation, and nutritional influences.
(About 88 minutes) Presentation at
The Common Cause Medical Research
9th Conference August 29-31 2008 Sudbury, Ontario
Posted at:
http://video.google.com/videoplay?docid=5412136843859172148#
Another video:
Biological Warfare Experiments on the American People
video with Garth Nicolson Ph.D.
by Snowshoe Films about 53 minutes
Posted at the Toxic Reverend Myspace profile as:
Chronic Illnesses and Biological War on the American Public
http://www.myspace.com/video/vid/57306629
and / or
http://www.myspace.com/toxicreverend/videos
I have st the profile controls so that you do not need
a Myspace profile to watch them. Though I have had
some censorship at Myspace, too. Some links will not
work from that profile.
Non-lethal Biological Weapons causing Fibromyalgia & Chronic Fatigue Syndrome Free documentaries linked into the New video link as well as peer reviewed medical journal articles posted in the “Treatment Considerations” section at the Institute of Molecular Medicine http://www.immed.org
Also recommend this free documentary>
New Emerging Infections:
Their Development, Testing and Resulting
Chronic Illnesses, with Garth Nicolson Ph.D.
By Snowshoe Films, Documentary about
non-lethal biological weapons known as
“Incapacitating Agents”. Their development
and association with numerous chronic illness
and the interactions with toxic chemicals,
radiation, and nutritional influences.
(About 88 minutes) Presentation at
The Common Cause Medical Research
9th Conference August 29-31 2008 Sudbury, Ontario
Posted at:
http://video.google.com/videoplay?docid=5412136843859172148#
Another video:
Biological Warfare Experiments on the American People
video with Garth Nicolson Ph.D.
by Snowshoe Films about 53 minutes
Posted at the Toxic Reverend Myspace profile as:
Chronic Illnesses and Biological War on the American Public
http://www.myspace.com/video/vid/57306629
and / or
http://www.myspace.com/toxicreverend/videos
I have st the profile controls so that you do not need
a Myspace profile to watch them. Though I have had
some censorship at Myspace, too. Some links will not
work from that profile.
Heat is making me miserable this year. I’ve been avoiding outdoors between 10-4 and taking ice packs with me. Seems to help! Going to check out the links you shared though!
I am really miserable in the heat and humidity. Even AC does not help…the sweat just soaks my hair and clothing and i cannot cool off. If the AC is set too low then I ache from the cold-but anything higher will not cool me off and i ache and sweat profusely. Worse, my thought processes seem to slow down to the point that i cannot think clearly at all.
At work it is not too bad as they keep it at close to my ideal temp and are very accomodating about lowering the temp if i need it. But we have only bedroom AC and so being home is awful…so hot!!! And husband does not like AC and so he turns it off in the middle of the night…
The chillow helps but central air would be better.
Heat kills me. My head sweats profusely… altho this can happen in cold weather, too. I feel weak, occasionally feel faint, usually feel overwhelming fatigue, especially if a storm is coming. Mild activity causes huge muscle aches, and exertion can cause me to feel like staying in bed for days, altho I can’t due to bills and the job.
I moved out of the Midwest last year because of the sudden and dramatic barometric changes. Here in Tucson last winter was chillier than I expected but nothing like Kansas! I had some minor (compared to previous winters) issues like tight muscles, hard to get warm, stuff like that.
So far so good this summer. The heat hasn’t bothered me perhaps due to the lower humidity. I’m not sure. Monsoons are supposed to start in the next couple of weeks so I’ll have to see how that goes.
I stay hot constantly. I live in the south and the temperature here has been in the upper 90′s and over 100 a few times already. I am glad you mentioned redness in your face. Anytime I get outside, even going from a building to my care, I get red faced and perspire like crazy. It is embarrassing when you have to always keep something on hand to wipe your face. However, I get so hot, it is very hard to cool down. I take cool water showers, about 2 or 3 a day and try to stay in as much as possible.
So glad I saw this article. Had FMS/CFS about 4 yrs now so still learning. Living in NE I only thought I had more pain, flares & fatigue in the winter. Now this week it is just starting to get hot outside (first 90-temp today..over 100 tomorrow) and I’ve had a migraine for 3 days now and since my drive home from work today my skin feels sunburnt, yet I wasn’t really in direct sunlight just the heat. I’m wondering if the gradual temp increases are leading to all the “stuff” I’m feeling this week? I honestly have never heard of heat sensitivity with FMS other than with skin & some medications. I am always hot and have a fan in every room (or just sweat a lot) but this is different.
Also, glad to see some info on the Chillow. I’ve seen these at Walgreens and almost bought one several times, but wasn’t sure if it really helped. And like most of you, I don’t want to spend money on another gimmick that doesn’t really help. I already get hot instantly when I lay down in bed…it’s like everything I’m touching is heated and I have to have the fan on or I can’t get to sleep. Luckily hubby is hot-blooded and my dogs are adjusting. I keep mini fleece blankets on the bed and around the house for them. I’m wondering if the chillow would help me stay cool when I lay down and not be quite so soaked when I wake up. Although I know menopause can happen at any age, I am only 40 and even my doctor says he doesn’t think the change is setting it for me yet (even though I’ve got a laundry list of female health issues too). I just want to stop sweating! Would be nice if the pain and all the other “stuff” would go away too, but I think you all know what I mean!
Thanks for the info and all the support. I hate that any of us have to deal with all this unknown, but glad to know I’m not alone (or crazy) at the same time.
I have ra but during the summer months my fatigue increases at least ten fold…If I do something like shopping or go to my grandson’s ball game I have to stay in bed for 3 days…was wondering if anyone else had this sympton..
Yes!! I have RA and usually am much worse in hot weather. Of course the overwhelming fatigue is part of RA, but summer is unbearable — especially this summer of record-setting heat here in Dallas. I could barely take care of my hygiene and feeding myself without being totally exhausted. If I had to do anything further, I, like you, had to recuperate for at least 3 days — sometimes a week.
I grew up in Florida. Used to love the sun & water. As I got older, I grew less tolerant to the heat. So much so that at 14, I started dropping from the heat after physical education. By the time I was 28 I had my diagnosis of Fibromyalgia with signs of autoimmune but neg Ana. I stopped being able to sweat normally by this point. Now at 43, I don’t sweat ever. I’ve been mocked that I’m going through the change. It’s become abusive where I work now. I can’t prove I’m sick since I’m neg Ana & fibro & cfs are looked as pill junkies, not really sick or disabled. Overheating has caused me to drop & have seizures before. I’m fighting heat sickness right now from work. I’m falling into a nightmare slowly daily, waiting for the day the heat wins at work & I lose my job. I won’t be able to return to work, I won’t be able to leave my apt. Just walking to my car with the sun searing my skin & the heat from the blacktop will knock me out.
Florida is not the state to live in if your sick & have no insurance or money for legal representation. Can’t even get validation from drs since I’ve been targeted as a drug seeker, even when refusing pain meds. If the heat doesn’t kill me, then the lack of medical care will.