Cold Temps: Am I The Only One Who Feels Better?

Discussion in 'Fibromyalgia Main Forum' started by shar6710, Feb 12, 2007.

  1. shar6710

    shar6710 New Member

    I would appreciate only CFSers respond since it seems pretty well known that those of you suffering from FMS are more painful in the cold and it can even trigger a flare.

    We have been really cold here with lows in the single digits or below zero and highs sometimes barely in the teens. We've only been above freezing twice in about three weeks I think.

    Anyway I find that although I am a little more painful I am able to do more when I'm outside (simple barn chores). I still tire quickly, get SOB etc, but I don't get the nauseous, about to blackout feeling that I normally do. As long as I rest a little between each task I can do about twice what I can in the heat. Of course that still isn't a whole lot.

    I realize many of you don't have to be outside in this weather but maybe you've had to walk a little ways or something. If so do you seem to be able to do a little more or am I a weirdo?

    I seem to have a pattern where I slowly improve a bit through the winter and into late spring but by July or August (depending on when it really gets hot) I start to go downhill and crash again.

    Any ideas on why that may be?


  2. TinaJones

    TinaJones New Member

    I have both CFS and Fibro - and I do much better in the colder weather than in the hot. Yes, I can feel the cold's effect regarding my pain (makes my bones feel like they are aching). BUT, overall - ANY heat puts me into a MAJOR flare. In fact, I "have" to keep my house at about 68 degrees year round (A/C is a must for my health!). My kids freeze sometimes, but they know that I just can't make it when it is warm/hot.

    My fatigue sky rockets in the heat; my heart rate goes way up; I get dizzy and shaky, etc. I could NEVER do any weather with humidity especially.

    The way my doctor explains it is that my temperature "regulator" in my body is basically broken. Now, what that means clinically speaking - I'm not really sure :) I just know I do much better in a colder environment.

    We moved from CA to CO about a year ago - and I definitely notice the weather's effects on my body. I'm much more comfortable here because it's a much milder climate.

    So, you are not alone! Look forward to talking more --Tina
  3. shar6710

    shar6710 New Member

    Thanks for the replies everyone.

    Dncnfngrs: of course "combos" are welcome. I didn't mean to be exclusive I just already knew that the fibro folks are worse in winter. There is certainly no reason to delete your reply I respect you and enjoy reading your posts.

    Some doctors have suggested that I have FM too, but I've never been formally tested. I figure I've collected enough initials (CFS, OSA, RLS, RA) and don't really need any more. I have been very painful at times, so much that it was excruciating to turn over in bed. Strange that I never thought to mention that to my doctor, but when my hands became to painful to hold on to anything I went for treatment. Fortunately Celebrex helps both for me and pain is not normally my disabling symptom.

    Stovetop, I'm wondering if it is really cold or just cool and damp where you are. I can't seem to remember if you've ever said where you live. Hope you are somewhere with a short winter since its so hard on you.

    TinaJones: Yes, Yes, Yes! You sound just like me. When we first moved here I wore long underwear from Oct til May. I think I've worn it once or twice this winter. I used to freeze in the house too when the thermostat was at 68 but now I tend to get hot.

    Temp regulation is probably right on target. I can handle temps of about 80 if the humidity isn't bad but more than that and I can barely move.

    When I think I have a fever my temp is about normal now, but when I feel (relatively) good it is always at least a degree low. Do you have this problem too? Seems like that would make me more sensitive to cold. I do sometimes get chills now but not often.

    Skeesix: sounds like we are in the same boat. And like you I could only tolerate a narrow range of temps the first few months of my illness. I think I was constantly running a temp back then. I had frequent chills and night sweats.

    Anyone else?


  4. rockyjs

    rockyjs Member

    I've never done well in the cold and here I am living in the mountains with practially all of the past month below freezing at night! My body starts hibernating in November and wakes up in March.

    I have a friend with MS and one with lupus and they love the cold and keep their heat much lower than normal. But they don't do well in the summer.

    I think some of it has to do with central nervous system damage and where it is in the brain/spinal cord. My friends have white matter damage and I have gray matter damage so maybe that's part of it.

  5. Daisys

    Daisys Member

    I've had CFS longer than FM and it affects me more. I always get worse in the winter, but I have SAD, so that may be why.

    I absolutely can't tolerate heat. At about 80 I know I've hit my limit and am miserable.

    The winters here in the Pacific Northwest are damp, and I really hate it. I always thought being cold was part of my winter slumps. We went on a long weekend to a cold, snowy place, and I felt great. I went cross country skiing for the first time, and had a blast and could keep up with everyone else. Part of that was being at a higher altitude, I know, and the adrenalyne (sp) of the trip.

    So, I think I need winters to be more dry, and the days longer, and summers to never be too hot. Where on earth can I go?
  6. terrilynnb

    terrilynnb New Member

    You are absolutely NOT alone. this is one reason that I have been convinced for years that CFS and FM are 2 totally different illnesses. I keep hearing FM patients say they feel better in the heat and cold makes them worse, but I have absolutley NO heat tolerance now and feel MUCH better in the cold. Still have the sore throat, swollen lymph nodes, low grade fevers when I do snything physical, but do not have the fainting issue. Do you have orthostatic hypotention? My cardiologist put me on a med that raises my blood pressure-dialates the periferals and this has helped a lot but still the heat triggers weakness and faintness. The problem is that heat dialates your blood vessels so that it exacerbates the low blood pressure issue. Also, many of us are given meds like beta blockers for arythmias or panic attcks and that makes the blood pressure too low. Same with some antidepressants.
    Also, do you have trouble retaining liquids? I was constantly thirsty and peeing, like a diabetic, but had low blood sugar, not high. finally someone tested me for diabetes insipitus which has no connection to blood sugar but is a lack of anti diaretic hormone from the pirtuitary, so you can't hold any fluid. (so you are dehydrated which adds to the faintness in the heat.)My endocrinologist put me on a low level of ADH and that in combination with the Proamatine to raise blood pressure have mad a big difference. I can now stand in line at the PO or bank. the issue though is that while I take it during the day to be able to remain upright, you can not recline to take a nap because the blood pressure is higher. (but when I take it, I don't feel like I need to lie down during the day. So I do not take it at night. Also, I don't know about you, but I do not perspire in the heat like other people so that makes it worse also. Do you have any of the above issues. ?????
    Where do you live?
  7. shar6710

    shar6710 New Member

    Thanks for all the great information and validation too.

    Rockyjs, its interesting you mention people with MS liking the cold. A good freind is convinced that is really what I have because my symptoms are so similar to her Aunts who is disabled with MS. Of course she can't see my swollen lymph nodes! Interesting theory about white vs grey matter damage.

    Daisys, not sure where you could find that kind of climate but let me know if you do! Maybe the high desert? Winters here are not normally damp and right now its very snowy! I think cool damp weather is worse than the bitter cold.

    Terrilynnb, I too am amazed when fibro sufferers talk about saunas and hot showers, makes me naesous just reading about it. Showering for me is always a balancing act between relieving some of my pain and stiffness but not staying in so long I get faint.

    I have not had a tilt table test so I'm not sure about the Orthastatic Intolerance. Whe I first became ill my BP was very high(200+/120+) and I was on a beta blocker for short time. Other times it seems low or I think odd: normal to low systolic and high diastolic. Like many of my symptoms it tends to change back and forth.

    I do occasionally have periods of being very thirsty and peeing a lot too. I usually only lasts a week or two so maybe its hormonal? These episodes are often accompanied by headache if that means anything.

    I have never been one to perspire a lot but I do some. I was well enough early last summer to mow some (we have a Zturn so it's fun!) and the only place I sweat was my butt and back against the seat. We live in Ohio so fortunately during the hottest months the grass doesn't grow anyway, I used to mow more often wearing a jacket than shorts.

    Huck, I didn't know that cold temps could bring on angina in some. I guess I have the oppposite of those people! Haven't had a chance to look up Ken Lassesen's info but I'll try to later.

    Thanks all,

  8. foggyfroggy

    foggyfroggy Guest

    Yes! My body seems to like the very cold dry weather (that we get very seldom here lol). Frozen sunny days are much better for me and I just sit outside and breath that frozen air.
    My husband thinks I'm nuts as he hates anything lower that about 40.
    I keep my thermostat around 65 to 68, no higher.

    The odd thing is that as the years go by I have been getting more heat tolerant than I was when I first got sick. Then I was miserable above 75 or so, but this last summer I did fine in the 80's. I don't sweat either so that is a problem, but since I am housebound I don't do anything resembling exercise anyway.

  9. jlcrafter

    jlcrafter New Member

    I haven't been formally diagnosed with cfs, I have with fm. But I do so much better from about September to June. If the temps get above 75 I start getting sicker. I have SAD, but it's backwards from most people. I get sick and depressed in the summer. I keep my house at about 68 or lower, when the kids complain I tell them to get a sweater.

    You are not alone in this!

  10. shar6710

    shar6710 New Member

    I'm not alone.

    FoggyFroggy, Frozen sunny days are my favorite too. I think the best days are in the 20's with a little snow in the ground and sunny with just a little breeze. Unfortunately the wind howls most of the time at my place.

    Jlcrafter thanks for your reply, I'm happy I didn't find out that I was the only one.

    Dncnfngrs, so did your temp BBT drop while still on the treatments you mentioned or did you have to stop them for some reason? Any idea how to convince my doctor that I have a low BBT so that when I run a "normal" temp he'll believe I have a fever?

    Thanks so much for the replies,

  11. pasara

    pasara New Member

    For me it is any extreme in weather. I finally bought an air conditionaer, which I had always been loathe to do, because the summer heat and especially humidity, made me very ill and faint. So on the hot summer days I have to stay inside. This is a huge switch for me.

    The cold is very hard though too. I live in Minnesota, so extremes of weather seem to be the norm. For me, one of the worst places though was northern California where my folks live. I love the trees, but the fog and dampness made me feel horrible. Went right to the bones.

    Someone mentioned a tilt table test. Could you tell me more abou this?
  12. webintrig

    webintrig New Member

    I have both FMS/CFS and so the cold and the heat bother me.
    I can remember way back when, yeah I am as old as the dinosaurs, lol, but I walked into a sauna room for the very first time and it took my breath away. Didn't even get in the door good. Wow, just remembered that! High Humidity does the same thing to me and hot weather makes me sweat and I want to faint. So anything over 80 degrees and I am outside, I have to be careful. Well, you know about how cold effects us FMS people so I won't go into that! My flares aka crash and burn, happens at anytime, anywhere, doing anything! I am also a walking barometer, lol!
    Love ya my friend and praying for better days ahead for all!

  13. shar6710

    shar6710 New Member

    Thanks for your replies.

    Pasara, if you do a search on this site you should find threads about tilt table tests. As I said I haven't had one but I know you are strapped to a move-able table and your heart rate and BP are monitored as they move you from a laying position to upright. Some people actually pass out from this maneuver I understand.

    Webintrig, now that you talk about saunas I remember many, many years ago in my almost forgotten youth (college)I tried the sauna at the gym and I couldn't stand it. I'm not sure I even got seated before I had to leave. I had totally forgotten about this incident!

    Best wishes.


    [This Message was Edited on 02/14/2007]
  14. turquoise

    turquoise Member

    You're probably very mold sensitive- I am.
  15. harrysmom

    harrysmom Member

    Dear Shar,

    One reason I like this site is even if I am doomed to live with CFS - almost 11 years now- I can come here and at least feel I am not alone and the hot/cold issue is a perfect example.

    I live in the Atlanta area and I find that I can go outside and fill the birdfeeders and get the mail and do a little work in my greenhouse as long as it is cooler than 70 degrees or so. After that I get the light headedness, strange feeling like I have to sit down and can't cool off. Just like several of the other respondants. I love the weather to be very cool or cold even though it can make me ache a little more or feel chilly. These things can be remedied with a little pain medicine and a warm blanket. The heat related symptoms are truly debilitating and only kept under control by staying inside during the hot months with the AC on 68. When I am having a strong day I find I can drive my car to a store when it's cold out, but I cannot do it on a hot day even if I start out feeling fairly well.

    Good topic and obviously, one that is relevant to quite a few people.

  16. nev

    nev New Member

    But I feel much better in the cold weather. Heat and humidity especially make me feel just nasty.

  17. shar6710

    shar6710 New Member

    Hmmmm mold. That is an idea, I do better when it is cold and dry. On the other hand I always get worse in late summer when it is usually fairly dry too. BUT the house is closed up and the AC is running. I know mold on coils and in the drip pan can be a problem. Just yesterday my DH asked me to check online for some whole house air cleaners.

    Of course I know I'm allergic to almost everything that grows (including mold) and also to my animals, although as I've gotten older my allergies had seemed to have abated. My DH and I have speculated that the high pollen count in late summer overwhelms my already sick body and that is why I crash. Maybe it's the proverbial straw.

    So, Turquoise have you had any luck fighting mold?

    Harrysmom, Yup, as long as we are doomed at least we can be doomed together!

    Nev, I think you may be the only PWF that I've ever heard say the cold was better for them. Maybe you should start a thread and see if you are alone.



  18. Flammags

    Flammags New Member

    Hi Shar
    I have FM and ME, the FM profile fits me 100%. I always feel better in cold weather...heat makes me feel very flu like and brings on more of the spaced out ME stuff as well as the FM skin burning and muscle pains etc.

    I also get bitten to death by insects in summer...can't use anti bite stuff die to chemical intolerence! Whoopeedoo! (For anyone else's info, I find lavender scent does help prevent bites and I can tolerate the pure stuff, also Aloe vera gel helps stop the bites' irritation.)

    I've only just registered in here, hence the delay in replying.

    Hoping you're as well as possible

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