cidp and heat/humidity

    • Anonymous
      May 28, 2006 at 7:10 am

      Greetings, all!

      Wonderful to have this site back. Nice to see the posts of so many folks who have returned.

      I think we discussed this last season – does anyone else have an awful response when it’s hot and humid outside?

      Friday it was very warm here in NYC, rainy and obviously very humid. I was outside for approximately 1/2 hour. By the time that I arrived home, I was completely fatigued, crawled into bed around 6 p.m. and didn’t really awake until the next morning.

      I think that humid is “toxic” for me. Does anyone else have this response to the humidity?

      Just curious,

      Brad

    • Anonymous
      May 28, 2006 at 8:51 am

      Brad,
      I have problems with extreme temperatures both hot and cold. We don’t have the humidity (as it has not rained here in months) but we have very hot temps. and I have had some of my worst attacks from the heat. I just try to stay out of the heat during the day and go out in evenings when it cools down.
      Larry

    • Anonymous
      May 28, 2006 at 7:54 pm

      Hi Brad.. I live in Florida and, while I never was crazy for June-September weather here, I could live with it. Since CIDP, the heat just does me in. My neuro says this seems to be a problem for many people with neurological disorders in general….I love NYC but those sidewalks just bake in the summer,don’t they…Good luck…Annie

    • Anonymous
      May 28, 2006 at 9:26 pm

      Brad
      I live in Va. Bch. and have much the same weather systems you have. I was totally done in all last summer. That one 90 degree day we had last week, I just stayed in with the air on at 72. However, this evening it cooled down and I went to hear the music at the beach . It was delightfully cool. Let’s just pray for a cooler summer this year than last. (and no hurricanes ).
      Mary Ann

    • Anonymous
      May 29, 2006 at 2:00 am

      [QUOTE=Brad]I think that humid is “toxic” for me.[/QUOTE]

      Oh yes! That’s a great way of putting it actually! I had GBS, but ever since my bout, my internal thermostat has been a bit off. I can handle cold but humidity and heat really irritate me.

      It’s also rather frustrating when others believe you’re avoiding it out of laziness or being anti-social.

      To air conditioners! 🙂

    • Anonymous
      May 29, 2006 at 9:16 am

      There is something wrong with my “thermostat” too. If I get too cold, like yesterday, the sun was shining from an almost clear sky, and I thought it looked like I could shed some of my “winter-protection”, but the air was cooold, and blowing into the bargain, so last night epecially my legs hurt considerably more than usual.

      Too hot is also a problem, I have become a very demanding plant that wants temperatures between 15 and 25 degrees Centegrade to thrive without any precations made!:(

      The climate here on the coast of Norway suits me perfectly, it has been below 15 degrees since I moved down here at the end of April, but I can heat my house andc wear warm clothes, so I don’t complain. When the summer-temperatures arrive, there is almost always a breeze to cool things down. But more often than not the temperature is within “my” range.:)

    • Anonymous
      May 29, 2006 at 3:07 pm

      my neuro told me early on that heat will make most peripheral neuropathies worse. he said that humidity added to the heat will cause even more negative effects. also, he mentioned that temperature control is aided by small capillaries near the surface of the skin. CIDP effects the body’s control of these capillaries and therefore we can feel hotter or cooler than “normal folk” because this regulation is malfunctioning.

    • Anonymous
      May 29, 2006 at 8:09 pm

      Hi there

      There’s no question, that any heat (shower, weather, sauna, too many blankets) caused my hands and feet to be even more sensitive, number and yet more tingly at the same time.

      Good luck.

      Jennifer

    • Anonymous
      May 30, 2006 at 5:32 am

      All,

      Thanks so much for the responses. It’s great to know that I’m not the only experiencing this when it’s heat and humidity related.

      Best to all-

      Brad

    • Anonymous
      June 2, 2006 at 2:19 pm

      I always have been in more pain during the humid summer months here in northern VA. My hands and feet swell in the summer and I think that adds to the pressure on the nerve endings in my lower legs. I’m not bothered by the heat when I visit in AZ in the summer. Less humidity in the winter in my area so my pain levels are better.:)

    • Anonymous
      June 2, 2006 at 10:25 pm

      I live an hour outside NYC– and this is [I]slaying [/I]me.

      My whole life I never minded hot weather. I’ve been sick (increasingly affected) for about twelve years now, but not until last summer did I ever have a problem. Last year it knocked me for a loop, and apparently it’s going to be a permanent seasonal takedown from here on out. I started IVIg last July– I guess that doesn’t have any effect on this part of the nonsense.

      Until late yesterday I didn’t have air conditioning (my furnace cracked in March and the entire system was found to be useless, and they can’t replace condensors until the weather is warmer– when they scheduled for this week it didn’t occur to me that we might have a heat wave this early!) [U]and[/U] the fan in my car (air conditioning, defroster, etc) is broken (that’ll go into the shop on Monday) so no wonder I am feeling so ghastly!

      I think I remember trying cool showers last year and they didn’t help (when I’m like this ANY shower makes me sweat (I’m “thermostatically-challenged” too)– and the sweat doesn’t [I]STOP[/I], so that when I get out I can NOT get dryed off, I hate it!) Has anyone tried those wet rag things that you put on your neck? Or any other ideas? I’ve got a fan that I put on one side of my room, pointing out so it draws the air across my bed, that’s pretty good but only for when it’s not [I]too [/I]hot.

    • Anonymous
      June 3, 2006 at 12:54 am

      Cat, I am so sorry you are going through all that and all at the same time. I do hope all gets fixed very soon for you.

      I also have problems with heat and cold. Seems to be a very fine line that I can be in and be comfortable, well, as best I can be. My thermostat will still change even with that. I use a cold cloth on my neck, just lay it there and that helps to cool me back down, then five minutes later I am freezing.

      But the heat is the worse. When I start hurting the most, first thing I do is look at the thermostat in the house. But changing it doesn’t help cause by the time I get it where I want it, I have flipped again.

      It is an unending challenge to be at a comfortable temperature.

      I rarely go out, and we have not had much rain so it is not humid here right now. I remember last summer the humidity bothering me. And when I asked the doc if I could take a drive out west, the one condition he placed on me was the car must be air conditioned. Little did I know the car was a meat locker the whole time and my friend paid for it by freezing, while I was sweating.

      I think this is a mutating disease cause it never stays the same..lol..

      Blu

    • Anonymous
      June 3, 2006 at 7:52 am

      Cat,

      I’m sorry to hear about what you are going through. Yup, last summer was insidious in the Northeast – deadly humidity for months. I was stuck inside my apartment or my office in air conditioning for what seemed like months.

      Like you, I never minded hot weather, in fact, I thrived in the summer….oh well. Just had my IVIG treatment yesterday and you are right, it does nothing to help with this aspect of the disease. In fact, today I’m having my IVIG hangover…..headache, achy, blah-blah…..

      Never tried those cool rag things. I think, however, that the real culprit in all of this is the humidity. You need to figure out a way to de-humidify your life! Some new window air conditioners have de-humidifiers built in the until. Check them out.

      After I initially posted this thread, the humidity has greatly increased here in the city. I usually walk two blocks to catch the bus to work. I walk with a cane and trying to negotiate the two blocks in this humidity was like walking in the ocean with the water up to my neck with my feet sinking into the sand.

      Sorry to complain so much but rather than rail against the CIDP sometimes it’s easier to blame external forces!

      Hey, good luck out there, everybody! (apologies to the line made famous on a cop show several years ago – “hill street blues” – I believe.)

      Best,

      Brad

    • Anonymous
      June 3, 2006 at 9:12 am

      You know, our disease is closely related to MS. When I was in PT, the therapist tried to get ahold of a cooling vest for me to try. His thought was that if I tried the cooling vest, it might cool my core body temp by at least one degree, and if it worked, it would ease some of my pain.

      Unfortunately he never was able to find a vest that could be donated for a trial basis and he did not want to prescribe one without knowing for sure it would work.

      Has any one here tried that? If so, did it work?

      On the MS site, they have all types of cooling devises from ball caps, vests and neck wraps. They also use personal mister devises.

      Just a thought if anyone wanted or has tried them.

      Blu

    • Anonymous
      June 3, 2006 at 8:25 pm

      Ben gets insane when it’s hot out. He starts sweating at around 70 degrees and can’t go out when it’s stifling hot like last weekend. Since our air isn’t working, and the guy hasn’t been able to come fix it, he just sat around last weekend with fans blowing on him and sweat pouring down his face. Kind of put a damper on my three-day weekend because I wanted to go out and play, but his GBS comes first before my fun.

      Hope ya’ll cool off soon. Wish I could send my goose bumps over your way because I’m always freezing when it’s under 85.

      Shannon

    • Anonymous
      June 4, 2006 at 12:53 am

      Brad,

      Like Eric, I am affected by both sides of the temperature game. But each one gets me differently.

      Heat, but not as much humidity, aggravates my numbness. If I get overheated, or heat exhausted, I will usually experience an immediate loss somewhere. Several times I have woken up in the morning following a difficult heat experience with additional numbness. In my case, whenever I lose feeling somewhere, I don’t get it back. I have to be extrermely careful with heat. If I take a too-hot trip in the whirlpool tub I get stressed as well.

      When the outside temp gets below 60, or the inside temp gets below 65, my hands and feet do not respond to the temp change and they get very cold, painfully cold. It is like they don’t sense the fact that they are chilled and don’t request extra blood flow to warm them up or something. I have to wear gloves to stay warm. It looks silly to have gloves on in 58 degree weather, but I have to. When the heat slips down in the house, it gets me.

      I guess I need to live in the 70 to 85 temperature range. Just one of those things

      Dick S

    • Anonymous
      June 4, 2006 at 5:11 am

      I have become a whole lot better of my CIDP cousin PDN over the last year, but some of my symptoms are still there, and they still vary in strenght from day to day. But it’s been quite a while now, actually, since I had this particular kind of coldness in my hands.

      No matter the temperature of the air, my hand could sort of “freeze up” and become like icicles from the inside, first it just happened to my left thumb, but as my illness progressed, so did the extent of the “cryonic” feeling. No matter how much warmth I tried to apply from the outside, the “frost” did not disappear until “it” was good and ready.

      I guess some of you have experienced the same phenomenon:(

    • Anonymous
      June 4, 2006 at 11:32 am

      I remember last summer, in mid-August, I went to the neurologist who was to do the testing for CIDP… My skin was way too cold to do one of the tests (I think the electric shock one) and he had to look all over the office (it was lunch break, so no staff to help him find what he needed, but he was on-a-roll having gotten such “good” readings from the needle test that he did not want me to go until he could get some readings off the other test)… He finally found a heating device and got my skin where he could do it… He then asked if we could come back the next day to finish the testing and we agreed because we were pretty ravenous at that point too… The next day I came dressed in a long sleeve shirt with a coat and gloves to make sure that I would be “warm enough” for the test to work… And THAT was in the middle of August in Arkansas… 🙂 I think it was the air-conditioning at the neurological center that cooled me off too much for the test…

      Aimee

    • Anonymous
      June 4, 2006 at 11:46 am

      Guess that Frank was the weird one, the heat and humidity never seemed to bother him. He liked the heat, that’s why we sat on the beach everyday of the summer.

    • Anonymous
      July 10, 2006 at 5:48 am

      This thread appeared whilst we were away on holday in Germany. Just noticed a reference to it on another thread. Warmth, cold, changes in humidity may occur in various weather systems. I first became aware of extra pain occurring during atmospheric pressure changes and situations of what I now describe as mini-lows.
      Some experts suggest that atmospheric pressure is the main link between weather and pain. Rather than add many paragraphs here may I refer you to links to 2 of my web sites.(link deleted by administration) PDN, which Allaug in Norway also has as has Norb, is a relation of CIDP.
      On another site (link deleted by administration) and 2 succeeding pages tell more.
      In recent days I have had some really bad spells with pain. The link between the movements on the bottle and the pain is unfailing.
      Another factor is high wind levels. Drive my feet crazy.:mad:

    • Anonymous
      July 11, 2006 at 8:55 am

      Heat and humidity make life very difficult for me, too. Even before I had CIDP, I didn’t like that kind of weather. When I moved from Chicago to Vermont in 1989, I thought I’d escaped it. However, we had several very hot summers recently, with last summer being the worst. That, combined with not a lot of central air conditioning caused me to spend a lot of time closed up in my bedroom with the window A/C unit on. Not the best environment for my mental health.

      Thankfully, this summer has been cooler, and I don’t have problems dealing with cold.

    • Anonymous
      July 11, 2006 at 11:17 am

      Alot of you here have said that heat and humidity make you feel worse, Frank lived for the heat and humidity, it’s the only time he felt a little better, guess he was the odd man out when it came to the weather. But if it was cold and humid, he felt so awful with the pain being so much more worse.

    • Anonymous
      July 13, 2006 at 6:18 pm

      I will have the opportunity early next year to put this to an extreme test. We pretty much decided to return to Thailand for a couple of months during the hot season – to 100 degrees and 98 percent humidity. Carol will teach management again to a new group of Burmese refugees while I will continue to be the registrar. Need to dig up my 30 year old cap, hood and gown for graduation ceremony. Just hope I won’t collapse on the stage at Chiangmai University.

      We lived through the hot season three times before but my CIDP was in its early stages. I am curious to find out what is going to happen this time. I will make sure to have my rollator with me. I will keep you all updated from over there.

    • Anonymous
      July 15, 2006 at 5:38 pm

      Heat bothers me big time. Cold hardly at all. BUT, with sleep if I get heated up I not only get restless leg symdrome but, if there is such a thing, restless spine as well.

      I fix that by 2 things. Turn on the air conditioner to 67 at night, then turn on my side, and pull the cover away from my spine, leaving it hanging out. That, plus all the meds I take, especially neurontin, makes me able to rest and hold still.

      Hope this helps someone.
      Take care
      Patricia

    • Anonymous
      July 17, 2006 at 7:33 am

      The humidity is what bothers me — I have more neurological pain when the humidity is high and when it rains. Also have rheumatoid and osteoarthritis in my hands and knees which is worse when the humidity is high. The weather is terrible in DC this year — hot, hot, hot (100 today), lots of rain and high humidity. 😎 I stay in air conditioning as much as possible.

      Cathy

    • Anonymous
      July 17, 2006 at 10:24 am

      The cold is what affects me if my feet and hands get cold I can hardly walk. The heat doesn’t seem to bother my condition.
      Connie

    • Anonymous
      July 20, 2006 at 6:26 am

      Thanks for all of these great responses!

      The humidity has been so cruddy in nyc recently that it’s difficult for me to function.

      Just a few years ago I thrived in summer and had nary a problem!

      Oh well, since I’m not out in the sun much my skin will remain young and healthy looking!

      Best,

      Brad

    • Anonymous
      July 20, 2006 at 12:28 pm

      What a great thread!! I thought that I was the “only one” that has trouble with temperature and humidity. I would nearly freeze to death in the winter ~ our water bills were horrible! And over 100* I’m a “wet noodle” 😀 With the heat wave here this weekend, guess I’ll just lollygag in my own “puddles” ~ ha!

    • Anonymous
      July 25, 2006 at 10:18 pm

      Try monsoon season here in Phoenix!

      The humidty with 116 degrees. I am just starting to have another relapse and new onset osteoarthritis in my hands. I have to go in for PE tommorow.I have a new wedding ring set I got for my 10th and I cant wear it:(

      My last relapse was the same time last year so I think its humidty related.

      I can not do extreme temps. In cold, like another poster, my body gets to cold. I have autonomic dysfunction as a result of GBS ans CIDP.

      Strange is sometimes its 100 degrees and im freezing. I have fainitng issues as well with the autonomic dysfuntion. In the heat I fatigue out, and am hotter than normal. I have relapses. Just one day out driving in the heat and I have a hard time pushing on the brake pedal in my car.

      Amatrine

    • July 26, 2006 at 11:07 am

      Hello to all,

      I am new on the forum and the first message that hit me was the HEAT sufferance in CIDP patients. I live in Palermo, Italy and I can only look at the sea from my air conditioned car seat 🙁 the heat and humidity drag my feet and make me want to lie around all day.

    • Anonymous
      July 26, 2006 at 11:31 am

      I have a hard time regulating my body temperature (I stay hot mostly) because of the effect of GBS on my autonomic systems? Just guessing.

    • Anonymous
      July 26, 2006 at 12:29 pm

      Someone mentioned earlier that heat/humidity exacerbated his numbness — this happeed to me after being outside (90+humidity) for 2 hours. My face became numb again!!

    • Anonymous
      September 15, 2006 at 8:34 pm

      Hi Amatrine,
      Have all of your relapses been at this time of year?

      I have had CIDP for three years and I have had 9 relapses. They have all occurred in the months of March-August when the humidity and mold spore counts are high (I live in the Washington D.C. metropolitan area). I have never had a relapse during the winter.

      I am becoming weaker and weaker; I can still walk but am spending about 50% of my time in a wheelchair now. I am convinced a drier climate will be much better for me but i have been unable to find any empirical data on CIDP/auto-immune disease and the impact of climate. Anybody know where to look,
      Thanks,
      Nancy

      [QUOTE=amatrine]Try monsoon season here in Phoenix!

      The humidty with 116 degrees. I am just starting to have another relapse and new onset osteoarthritis in my hands. I have to go in for PE tommorow.I have a new wedding ring set I got for my 10th and I cant wear it:(

      My last relapse was the same time last year so I think its humidty related.

      I can not do extreme temps. In cold, like another poster, my body gets to cold. I have autonomic dysfunction as a result of GBS ans CIDP.

      Strange is sometimes its 100 degrees and im freezing. I have fainitng issues as well with the autonomic dysfuntion. In the heat I fatigue out, and am hotter than normal. I have relapses. Just one day out driving in the heat and I have a hard time pushing on the brake pedal in my car.

      Amatrine[/QUOTE]

    • Anonymous
      October 18, 2006 at 10:13 pm

      Well with this humid season we had this year, I was in alot of pain.

      Turns out I have rheumotid arthritis. Top it off I was just diagnosed with diabetis.

      I think I am running out of things to catch!!!

      Sorry to hear you are in a chair. I know how hard that is. I hope you are doing better. I havnt been by the board in while, so sorry for the reply being so late. Better late than never!

      I am actualy trying to find a job for the first time in 6 years. Using a Temp agency so they know I can not do a job where I have to stand…but if I dont get out of this house I will die, or my husband will,lol

      Ama

    • Anonymous
      October 19, 2006 at 5:45 pm

      Hi Ama

      Were you dxd with type 1 diabetes? Am curious, my son has type 1 and I have CIDP.

      Helen

    • Anonymous
      October 19, 2006 at 8:12 pm

      You know she didnt say! I know Im 3 points from needing insulin.

      In my case they are sure it was from steroids. My levels always went higher with them, and the last time, it just stuck there:((

      Amatrine

    • Anonymous
      October 20, 2006 at 1:57 pm

      I have found heat and humidity to be killers for me too. I cant do much outside anymore. I have been tolerant to the cold for the most part but I do find I am getting a lot colder in the winter than I use too cause I tended to be hot blooded all year anyway.