Heat & Humidity Affect My CFS & Fibromyalgia

I have been feeling pretty good here lately but on the days that are really hot and humid I am reminded of my enemies –  CFS & Fibromyalgia.   Yesterday and today have been a couple of really rough days for me as far as the major fatigue and pain.  It reminds me somewhat of the cold, wintery days when I can wake up and know that it is either snowing or really cold out because my body feels the temperature – it’s the same with the heat and the humidity.  I woke up yesterday and this morning with a bad headache and in a lot of leg pain and I knew instantly that it was hot and humid outside. 

This is what sucks about CFS & Fibromyalgia – it doesn’t seem to matter what time of year it is, what season it is – there is always something about the weather that affects our bodies and makes these illnesses flare up.  Temperature sensitivity is a common problem among ME/CFS & Fibromyalgia patients.  Some of us can’t tolerate the cold weather, some of us can’t tolerate the hot weather, and others of us (like me) can’t tolerate either.  My fingers, ankles and legs will swell up like crazy in the heat and that just makes the pain that much worse.  In the winter, I feel like the cold goes right to my bones.

I do not only feel more of the CFS exhaustion in the heat, but I also feel more of an overall sluggishness and tiredness that is different from the CFS exhaustion and fatigue we normally experience.  I want to sleep more also.  I have been having a lot of problems staying awake the past two days.  The only thing that I have found that helps is to get a massage or take a dip in the pool at my sister-in-law’s house once the hottest part of the day is over.  Today I was too tired to do even that.  I keep the air-conditioner on and the house very cool but on days like this it doesn’t seem to cool as well. 

I drink a lot of water but I always feel dehydrated on these really hot and humid days also.  So in addition to being extra tired and wanting to sleep more, I then am constantly running to the bathroom because I’m drinking extra water and I end up wearing myself out more because I don’t get the rest I need because I’m up every 10 – 15 minutes.  It’s a mess. 

I would love to hear some suggestions as to what others do to keep their bodies cool and if you have found ways to keep your symptoms minimal during the summer heat.

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  1. No suggestions unfortunately. However, I am absolutely dying in the heat in this summer, and absolutely could feel the cold this winter, so unfortunately I think I’m like you – effected by both. My doctor did warn me that he has had patients pass out in parking lots due to the heat, so I’m always looking for the closest to the building spot, and avoid going out (if possible) when the humidity is unbearable.

    I’m personally looking forward to the fall – but then my allergies will ramp up…..yeah, no season appears to be good. :-)

  2. I have been battling Fibromyalgia since April 2007. I am only 26 years old and I feel like I am in my 70’s or older. I am constantly in pain, I have no energy. I am terribly exhausted. It seems the more I do or move around the more I hurt. Just doing regular household chores makes me feel like Im about to die. The weather drives me crazy. I hurt when its hot out and I hurt even more when its cold and raining outside. It has tooken me four years to finally find a doctor that is willing to listen to me and help me out. I have tried every single medicine out on the market for fibro. And ABSOLUTELY nothing helps give me any relief except narcotics. I know they are not good medicines but I would rather take them and get a little relief from all my pain then to be in pain and agony each day. I have done physical therapy once and that doesnt help. And now my doctor is having me do it again. Every one that has fibro feels pain but not one person is the same. I would really like to hear other peoples stories that have fibromyalgia, so please send me an e-mail a tell me what you have done for yours and what helps you. I know what you are going through. I pray for each one of you. I hope one day there will be a cure for this awful disease.

    • What I FINALLY found that works (for me & is also suggested) is MSM. (methyl sulfonal methane). The ONLY one that I suggest is “Kala Health Opti MSM”. All natural. (check Amazon or EBay) 1 pound around $25.00 shipped. It tastes HORRID so I make my capsules here at home. I use 1 tbsp. every day. Comes out to 12 #000 capsules. Let your body adjust to it.

      It’s a Miracle in my book!


  3. Well, fibromyaliga, started about 15 years ago,and it is bad. I have to work, so that makes it harder. It has been stuck on the left side of my neck,jaw, down on top of my left breast and under my arm, swelling, big time.

    I thought i was having a heart, cancer, but i guess it is the DEVIL FIBROMYALIGA. i do not take any meds, i take a deep massage twice a month, and gives me a little relief, but now enough.

    note: summer, winter or raining days, doesn’t matter. It is a year round PAIN. very tough.

    Take care and may GOD BLESS ALL OF US that has this pain.

  4. things that will help me w/the heat, humidity:
    1. air temp in house needs to stay at 69 or 70 degrees i want to know what the circulating air is registering at….so i use my instant read battery powered digital read meat thermometer
    2. when i go out in car, i fill up a big thermos type cup (really huge ones) with ice, and i take with me 2 or 3 water bottles,or a half frozen medium size Gatorade
    3..wet your finger tip…stick it in sea salt, then in your mouth before, during, after going out
    4. wet a bandana, put it around your neck, or put it in a ziplock bag, and carry it in a lunchbox with ice paks great to revive you you can do the same with like those Wet Wipes some of us carry in our cars those are terrific cold
    5. i have something i bought long long ago at the drugstore, i no longer see it out there: Thera-Med Cold Pack 1-800-327-7845 these are for headaches
    they have a powerful velcro strap to stay in place…and they do this could also be wrapped up in bandana and lay this around the neck

    somewhere out there are hats, visors, and bandanas that have this gel inside…you immerse the item for a bit, and they help cool you down

    Can you tell I lived in Florida??

  5. hello Sandy thankfully it’s not been a hot summer this year back in the uk, June was very pleasent but since then its frequently been poor with plenty of rain and only a few brief warmer days. Last weekend my husband took me to the coast because the weather was fine but i really struggled in the heat and coudln’t wait to get back in the car and put the air con on. What i try to do is drink at least 3 litres of filtered water a day,dress in thin cotton clothing and keep out the sun during the warmest part of the day. I think a damp bandana suggested my another blogger is a excellent idea. I find sharing my experiences with others helps me feel less isolated and gives me something positive to focus on and meet new friends. To this end, with my family’s assistance, we have started our own site. If you visit on the attatched link http://dld.bz/mBZq and like what we are trying to achieve, you might consider exchanging your HTML banner code or your URL so we can advertise on each others sites and hopefully spread the word to a greater audience.
    Julie x

  6. I have the same issues as most of you. I did see a ramp up of my symptoms when I moved from the dry desert heat of Nevada to the hot humid weather of St Louis MO. I also have found my self having shaky spells when I am outside and it is hot almost like I will pass out. My fibro is so extremely bad that I have trouble if someone even bumps me. I feel like such a baby but I look back and realize I have had this since childhood. I could not go barefoot like other kids because it hurt my feet so bad. I was always heat sensitive as far as water etc went. My mother used to complain that I did not get the water hot enough to get the dishes clean. I had such a fear of falling down etc because I knew how horrifically painful it would be.
    I no longer know what to do. I wish I could quit work because I know it is affecting it. I have also had 4 back surgeries.
    I have a therafoam mattress which helps but still toss and turn all night from the leg pain.
    I know here I sound very pessimistic but I am not. All of my friends will tell you I have such a positive attitude. Here people understand me. So only place I can vent.
    The gentleman in my life does not understand but he does try somewhat. It seems the fibro is actually one of the two issues that we have.
    I pray that you are all getting through this time when the temps are high and humidity is just as high.

  7. I also feel worse with either the hot, humid days or the cold of winter. Seems many of us are affected by both. Living in the midwest we get the worst of both worlds! This summer has been horribly hot. On the worst days, I stay inside if at all possible with the air conditioning cranked up. If I go out, I take a small cooler with a bottle or two of cold, cold water and a wet washcloth or bandana staying cool in there, too. Laying the cloth around the back of my neck seems to help, just as Ann has suggested.
    My husband and I have also been going to a family member’s home to get in the pool in the evening for an hour or so. Just gentle, easy swimming or floating in the warm water feels so good and sometimes I feel better for a couple of days. Something for us to do together, too.

  8. Hello fibro fellow friends,

    I have been living with this stuff and worse for at least three quarters of a decade to a decade or longer. I have been in remission from hyper-thyroid which was so severe they said I was nearly suicidal. I would go out in my driveway even walk in the snow in winter wearing my bathrobe at night just do get relief. Doctors kept saying I am postmenopausal…that would be a breeze compared to this Vitamin D deficiency I learned about when my test results came back just 3 days ago at a low level. Now I learned at this website about an IBS connection and I also googled fibromyalgia after learning that my grandmother has a form of polymyalgia arturitis. I learned about this symptom when reading several revealing blogs on the subject.Now at least I am not alone in knowing that I am not losing m mind. Who knew that all these 13 years since first giving child birth I was unraveling from what I thought was carpal tunnel. I would get a lot of leg cramps that I thought were from swimming a lot at the YMCA. I do get so tired in morning from all the pain and especially exhausted doing simple mundane chores. It is a miracle, 3 children later that I managed to graduate with honors this year from college, at the age of 48. Thanks people for helping me see the light and by the grace of God and my children’s sake, help me to live again!

  9. This past week I was in for a check up with my fibro doctor and told him that with weather changes (it went from 100 to 60 within a day then back to the 90’s) I was feeling a lot of pain. He said although all of his patients told him this, he didn’t believe weather had anything to do with pain levels because there was no scientific proof! He also said the only reason we notice a difference in how we feel is because severe weather (hot or cold) makes us change our routine to a slower pace so we are aware of our pain more. I was totally blown away! I have had fibro since I was a child (diagnosed in 2000) and am now 53. I felt his comments also implied that our symptoms were all in our heads and I told him so…he said no, but this part was. Other than tests done on arthritic patients and the weather does anyone know of scientific tests done for fibro and the weather? I would be interested in finding something to show my doctor! I am so tired of having to prove to people that fibro is real! I also drink tons of water in hot weather, stay where it is cool and do what I need to do in phases. In the winter or cooler months I layer clothes, cuddle in blankets when home, and keep the heat going as much as possible. I wish you all the best!

  10. Dear Marie,
    I found this article written in 2002, a study was conducted in Cordoba, Argentina, where there are four distinct seasons every year. The study involved fibromyalgia sufferers and a healthy control group and aimed to find out whether pain symptoms could be linked to specific weather changes.The website is http://www.fibromyalgia-symptoms.org/fibromyalgia_weather.html. I also saw the same study in more detail on another page. I hope this helps you and personally, I think I would get a new doctor. The mayo clinic has a website all about Fibromyalgia. I don’t know it that would help you or not, but you can check!

    For anyone interested:

    I am studying effects of fibromyalgia in climate and elevation along with do patients prefer holistic or pharmaceutical medications to help them with their pain relief. (If there is such a thing as pain relief for fibro.) I too have this disease. If anyone is interested in helping me with my thesis, please let me know. It’s just a questionnaire I can email to you. Thank you all for your time.

    • My response is too late I’m sure for your thesis, but I found this chat room because I googled weather and CFS. Since my Fibro is better and only gets worse with allergy infractions or weather, I thought I’d add my info here. For those who can’t handle heat and humidity, I live in North Texas where the summer temps can get over 110 degrees and the humidity is high. I run to the mountains during the summer if I can afford it. I always have more energy there and can get more things done there as well. I’m now on disability because I can’t be out of bed for longer than an hour and that only about 4 times a day when I’m back in North Texas. At least I know now that weather affects others with similar issues.

  11. I have suggestions!!!!

    I started with CFS 16yrs ago (fatigue 2yrs, colds 5yrs). I have EXTREME heat and cold intolerance (10yrs now), but my fatigue and colds have subsided; I get fatigue intermittently from cold/heat intolerance.

    I’ve had 40+ thyroid tests throughout the years, all showing ‘normal’. Per my recent research, Whittemore Peterson Inst. of Neuro-Immune Disease in Reno, NV, my severity to heat & cold intolerance in addition to some other symptoms I have (ibs, etc.), may very well be related to my history of CFS.

    I’ve also just learned on two other sites, that because I have a history of CFS, it might be possible that my thyroid function abnormalities don’t show up on thyroid tests due to CFS. It was recently recommended to me through someone @ patientslikeme.com, to located a CFS endocrinologist who has expertise in thyroid testing/interpretation, to clarify if I do indeed have hypothyroidism. That is my current goal.

    I have outlined my symptoms and some helpful treatments I’ve used so far (vitamin b12, vitamin d3, bella donna homeopathic remedy 12c, concentrace trace mineral drops, etc.), relating to heat & cold intolerance, chronic dehydration, fatigue, muscle/tendon/ligament/other tissue issues, and other symptoms.

    If you haven’t used patientslikeme.com (a free site), I highly recommend it, as I’ve met 8 people of 17,000 members with severe heat/cold intolerance very quickly (within 2 days) due to the site’s good search engines and automated charts. I’ve posted my medical history that dovetails with so much of the Whittemore definition of CFS. I’ve also posted in detail on my profile, and 2 posts, re: my successes as mentioned above, along with treatment specifics. I hope you all will find it as beneficial as I have, my user name there is ‘heat intolerance’.

    I wish you all very very well. H.I.

  12. Shannon Sattterthwaite says:

    This is for Trista. I am only 27 and I too have fibromyalgia! My pain always eases up the warmer it gets, but it is dry heat here. and it get so much worse the colder it gets! I also have been on multiple med for fibro, only savella worked , but then when I got to 150 mg I did nothing but throw up, I tried to go down in dosage but I just kept throwing up. So now I too am on narcotics for the severe pain. My pain is in my lower back, my upper back, shoulders, shoulder blades, & my neck. My dr. says I have chronic neck and back tension and pain. If you want my email address so we can talk, just let me know or look me up on facebook. hope you start feeling better sweetie!

  13. Hi, I am 56 years old now and I have fibro since the early 80s only nobody really know anything about it. I was finally diagnosed in 1992, but that didn’t really help, because still nobody took it serious. Most doctors thought I needed to go to a shrink to sort myself out. I am German, and most of my life I lived in Germany, but I also lived in The Netherlands and Great Britain. Only in the last years of living in Cologne, Germany I found some doctors that knew some about fibromyalgia and my last doctor worked with TCM (Traditional Chinese Medicine), acupuncture, homeopathy and Bach flowers. I learned a lot from him. I also went regularly to my physiologist therapist. In Germany we have pretty good health insurance, for everybody.
    Since I came to the US only a few month we had health insurance through my husbands company, but that is 5 years ago. I came to the US in 2005 and I am early retired (get a small pension from Germany). I worked part-time in Germany (I was allowed to work 10-15 hours a week towards my pension) and I was glad I could work, but I can’t find work in an office here with so little hours.
    Since I can’t go to the doctor (we can’t really afford it if it isn’t absolutely an emergency) I learned to live with all my symptoms and syndromes of fibromyalgia and sometimes it is really hard. We moved around quite a bit, we lived in Southern California when I came to the US, than Las Vegas, NV, Portland, OR, Tulsa, OK and now we live at the northern Oregon Coast. It is beautiful in Oregon and on the coast, but the cold wet weather is taking its toll. I am more than ready to move, but we just don’t know where to. My husband is a truck driver now, and I only see him around once a month, I don’t have friends here, so it is sometimes tough for me. We do have a wonderful dog, called Angel, and she is a real blessing for me.
    I think the weather in Southern California was best for me, but it is just to expensive to live there, we can’t even really afford Portland anymore.
    We were thinking about Texas, but I remember Tulsa, OK (we only stayed there 6 months) and the humidity was awful, for both of us. The dry heat in Las Vegas was bearable, but not the hot nights. Having the AC on at night is not very comfortable for me and the noise disrupt my sleep even more than normal. I am a light sleeper, wake up lots of times at night anyway, like most fibros.
    We are thinking about Boise, ID, Denver, CO or Albuquerque, NM. But I don’t know, I just want to make the right choice, I am sick and tired of moving over and over. And my husband wants to get a driving job where he can be at home every night and me too, and so we need a bigger city with good opportunities and I hope to become a dog trainer. But for that I have to feel better, I haven’t felt as bad as the moment in years. And of course to relocate is a major headache for me, because I have to do most of it – packing etc. – and I just feel so crappy that I don’t know if I can handle it. I guess I can, when we have decided where is the right place to move. I think I can handle dry heat and dry cold pretty good, but I hate the cool and wet we have here. I look out of the window and it is raining. I have to walk Angel, but I just don’t feel like it, and that isn’t fair to her.
    Thanks for listening.
    God bless.

    • Karin – Did you ever find a better place to go? I am thinking of Las Vegas by now due to lower cost of living (except utlity bills) and more sunshine, which helps me a lot. I hope you are finding your spot. Moving around a lot has put a lot of stress on me as well. It gets kind of lonely.

  14. during the heat i got so sick and dehydrated the heat can cause nausea, vomiting, headaches, go for a walk early in the morning AROUND 7AM before the sun is up and take gatorade with electrolytes in it. eat nuts, fish, chicken things that give you energy, yoga is good message therapy, chiro. after it gets hot i am grounded not allowed outside so i do art work and keep my levels down and stay hydrated water melon, fruits in the juicer i am trying what works and i wish you all well remember do not give up your not alone i am here to give support. yes the pain is bad from fibromyalgia but the chiro really helps and the best part no meds to make me all doppy. the side effects are not worth it.

  15. sherrymusser says:

    I have had fibro most of my life. For me I thought that the pain and fatigue was normal. When the unrelenting fatigue set in, in the 90’s I was diagnosed with fms and cfs. In an effort to help myself become healed, I have educated myself in the field of massage. In my practice i see so many people who have fms and cfs. It is encouraging to know that we are not alone but at the same time, life does present to be challenging at times. For me the weather really does play a role in the pain, stiffness and extreme fatique. It seems to take me back to the time where I cannot pick my hands up. Feeling like someone tied heavy weights on them. It has been an encouragement to read that others have the same difficulties with the heat/cold/humidity. When I talk to my husband ( who is very supporting) he says everyone has this problem with heat. But it is not the same. Thank you for posting it has given me encouragment in this difficult time. God Bless!!

  16. Randy Herndon says:

    I live in South Florida near Miami. I was born there and until I developed Fibro/CFS it was not a problem. I am 62 now and in the 1960s and early 1980s lived without AC with no real problems
    Once I developed thee disorders in the late 1990s each year has progressively become worse. I can tolerate cold much better that hot and humid.

    For me stay inside in the June-September period of heat and humidity is the best way. for me. Often down here the heat index in summers is 105-110.

    Another thing I have noticed if you exercise make sure it is in a very cool AC room. If I over do the exercise I will feel it in my muscles in about 48 hours or so–a delayed onset. So tone down the exercise until it gets cooler. Also exercise in smaller shorter segments broken up throughout the day so you body will not stay overheated for any long period of time. Take a cool shower after exercising or working in the yard, etc.

    Do not get upset about things as this seems to exacerbate the situation.

    Sleep in a cool AC with light clothing on during the heat.

  17. I moved from dry Colorado to temperate rain forest area of Asheville, NC and I am having a lot more problems with fatigue, pain and it is interesting you mentioned leg pain. I have this thing where my left foot starts to go numb and then it sends pain up my leg – almost like sciatica and it is now happening here a lot before it rains and during the rain. I just don’t feel “well” in humidity at all and am going to move back to my dryer climate (though maybe not Colorado again) as I had less of that humidity, rain type involved symptomology. I still had issues there, but I feel really funky out here and have a lot of feelings of fullness in my head when it rains and pains in joints I didn’t know I could have pain. Also, less sunlight does me in severely in terms of mood and when my mood is low, the FM/CFS stuff gets worse too. The more sunny, dry weather there is, the better I seem to feel.

    • Michael says:

      I moved from Denver, CO to Charlotte NC and feel exactly the same way as you, Cat. Springs and falls are bearable but summers and winters both tough. Which areas beside CO do you consider moving to? Too bad it is not easy for me to move.

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