cidp, heat and humidity
AnonymousJuly 10, 2007 at 6:26 pm
I posted this thread last year at about this time………..in addition to all of the usual cidp symptoms i also fight fatigue, sometimes crippling, daily.
i live in nyc and the humidity combined with heat right now has almost rendered me functionless. it was so bad yesterday that at work yesterday it was extremely difficult to keep my head up off of my desk, concentrate, focus, etc.
heat/humidity is toxic.
i told my staff and other co-workers that i absolutely couldn’t come in today and worked from home (i actually got tons done….)
i find that when the heat/humidity is this oppressive it further weakens my leg muscles and it increased my inability to walk. i already walk with a cane.
anyone else having weather related problems?
AnonymousJuly 10, 2007 at 10:42 pm
Living in Florida, where the temperature is much like yours, between 90 to
95 degrees, I stay inside with the air conditioning. I can even sweat inside…lol. My doctors all say the same thing…stay out of the heat with
CIDP, it will progress the weakness…so I do.
I’ve been up there during the summers, it is hot, but in the city, there’s
isn’t any air floating around with all of the buildings…it’s worse.
AnonymousJuly 10, 2007 at 11:13 pm
The summer is not my favorite time of the year. Between the heat and the humidity it feels like my energy is sucked out of me. Thank God for air conditioning. School starts in mid August and the first few weeks of teaching is “fun” especially with middle schoolers[/SIZE]. 😀
[SIZE=”4″]PS You might want to change your font size. Some of us old folks can’t see that clearly. [OK, sometimes that a good thing] :rolleyes:[/SIZE]
AnonymousJuly 11, 2007 at 6:43 am
Brad I know what you are saying. If outside it feels like 102F with the humidity imaging what it is like inside a factory. Really hot especially with me having to work fast to keep up with the production line.
Miami Girl did your DRs say that it will just make you weaker but not make the CIDP worse like a relapse?
Yesterday it felt like 99F with the humidity imagine today it might just be as bad. I am not looking forward to it.
AnonymousJuly 11, 2007 at 7:37 am
The heat really doesn’t seem to bother me a whole lot. I work outside in my yard all the time in the Missouri humidity it doesn’t seem to make me feel weaker I work for a printing company and am in the air all day , when I get home if I sit down I’m out but if I go outside and start doing something in the yard are something I’m ok.I coach my daughters softball team so I am out in the heat at least 2 days a week sometimes three.
AnonymousJuly 11, 2007 at 8:11 am
We have just come back from Greece …. a word of advice, dont go there during summer as one day it reached 119 in Athens and was only slightly cooler the other days. The heat makes me feel physically sick and much weaker. I spent most of the afternoons in the room reading with the aircon on and some time in the sea or pool. Once again I imagine I was thought to be lazy or unsocial, but what else are we supposed to do??
July 11, 2007 at 8:39 am
I use to love the heat but now it drains me and makes me ill. Spokane has been having record breaking heat, most people say the humidity isn’t bad here but coming from the desert, I beg to differ. I’m dreading tomorrow when it’s going to be the start of over 100 degree heat for a few days and I have to go to the hospital for the IVIg. Me and the cat will be spending the next few days in bed with the A/C cranked!
AnonymousJuly 11, 2007 at 9:54 am
Yes, it can progress the CIDP if you are hot, sweating and are starting to
get dehydrated. In Miami, when it gets hot, they announce on the news to
stay inside if you are elderly or have a weak tolerance for the heat.
Apparently, the heat and humidity exhaust your ability to snap back to full
strength before you were hot…leaving us in a lower state of weakness.
It depends on how bad your CIDP is. It really affects me…when it’s hot, I
do absolutely nothing that exerts my strength; washing clothes, cleaning,
vacuuming, washing down my patio…nothing.
AnonymousJuly 11, 2007 at 10:29 am
[B]Frank was one of the rare people who could sit in the sun all day and never have it bother him.
Sun and humidity does not make CIDP progress, it can aggravate your residuals but not make it progress.So whatever you are feeling is not a progression of the GBS/CIDP.[/B]
AnonymousJuly 11, 2007 at 5:32 pm
Thanks Miami Girl. At work it gets real hot over 100F sometimes with the humidity. They had me do a big board this morning and I did it for 10 minutes before I asked to get switched. I had a helper doing every other one but still I didn’t have the strength to keep doing it. People see I look normal and don’t understand. I go to physio therapy and I don’t do much repetition of 3-4lbs with one hands or 12 lbs with both hands so I realize I lost strength from last year. I have tendinitis in my hands that makes it hard on me.
I am waiting for my first ever 5 days of IVIG. I should get it within the next few weeks.
AnonymousJuly 11, 2007 at 6:32 pm
I am one of the few who loves to be outside-no matter what the temp is. I can’t stay in the house when its soo beautiful outside. I do stay hydrated when I’m out in the heat, and I do sit and just watch quite a bit, sometimes in the sun and the rest of the time in the shade. I can’t pass up the chance to go swimming either. There are days when I just like to sit around in the ac also, not very often though.:cool:
AnonymousJuly 11, 2007 at 10:14 pm
I can understand how aggravating it is to work fast in an arena that is quite
hot…I have a weakness in my hands as well. I came from the neurologist’s
office this afternoon, (the new one) and I specifically asked him your question
about the heat. He said that it will bring on progression if you are over-heated, dehydrated and “normally” are weak from the disease. It can easily
exacerbate a progression if you are prone to them. He said that some will
increase their corticosteroids or induce an IVIG in a shorter period of time
from the last IVIG…but, what do doctors know…he’s a board certified
neurologist…every one has a variant to this disease.
Hopefully, you’ll feel better after your IVIG…good luck Sue.
AnonymousJuly 12, 2007 at 7:03 am
Thanks Miami Girl.
I know my nerve testing didn’t change when I went saw the Neurologist last month but the strength in my body has changed in the last 7 months. Never having IVIG I am getting impatient. Want my treatment now.
I will ask my family Dr on Monday about getting the handicap parking pass. Since lately I go out to get what is absolutely necessary and then I go home. I don’t have the energy to do much more then that. I also grab a shopping cart to put my purse and it is nice to hold something when I walking around the store.
Last year I didn’t care about parking close to the stores but the last few months I start looking for the closest parking spot. I find the doors look so far away when I am out to buy stuff.
Also yes in the factory it is hot and the heat stays there a few days after the heatwave disappears. People were leaving from other department yesterday because of the heat.
AnonymousJuly 12, 2007 at 9:45 am
Humidity definitely affects me. I have no energy, can hardly move and it just drains me so I can’t cope. I live in the DC area and the humidity is brutal during the summer here. My sister lives in Scottsdale, AZ and I don’t mind the heat at all out there. In fact, I feel so much better when I’m in AZ – it’s truly amazing.:D
AnonymousJuly 12, 2007 at 3:29 pm
I went to my doctor’s office years ago to get my car hang-tag papers filled
out…it’s definitely a walking saver. I don’t know how it is in Canada, but here
in my state, once it is issued, they sent out new ones every few years
automatically. Personally, I don’t drive anymore because I have the numbness in my feet so I can’t tell if I’m hitting the brakes with any strength.
I maintain my car with insurance and auto club programs, just in case, one
day, I can drive again.
I’m due for my next infusion at the end of this month…so far, I’m okay. I just
don’t want to end up in the hospital again.
Hopefully, you’ll get yours soon…let us know how you are doing…
Miami Girl 😉
AnonymousJuly 12, 2007 at 6:44 pm
Thanks Miami Girl. Here in Canada you can get one that is temporary for like a broken leg and stuff, then you can get one for 5 years subject to medical changes or you can get one permanent that you replace every 5 years.
But since I still work I am not sure my family DR will go for it but I will ask him when I see him on Monday. This way here when I am tired and feeling depress I know I can go out and not have to park to far from the store. Especially when I go for my IVIG treatment after my treatments if I feel well I will drive to the nearest shopping mall and have supper there and relax.
My IVIG treatment is out of town and I don’t see the malls that much.
Hopefully you will drive again soon. Good idea on keeping insurance on your car. You never know what will happen in the near future.
AnonymousJuly 12, 2007 at 10:04 pm
In Canada, does that mean, if you work you cannot get a hangtag? Here, if
you have a disability, your doctor signs for one, you can. Sometimes, I see
people use them and they probably walk better than I ever did…but then,
who knows what their disability is. When I used to work, a co-worker, was
using his father’s disability hangtag…that really made me angry…he used it
because he didn’t want to park far away. Karma got to him…he was fired
for sexual harrassment.:p
AnonymousJuly 13, 2007 at 7:12 am
Hi Miami Girl In Canada you can get a hangtag if you work. I am on my feet all day. If you look at me walk I walk normal. So I don’t have trouble walking just not the energy to walk so lately I limit the amount of time I go out to the stores. I have to convince myself I deserve it so when people I know comment on it and I would have to be able to say with conviction that I need it.
I guess I am not ready to accept the fact I may look normal but inside I feel weak and tired and frustrated. I will ask and tell the DR I need to get out more and if I am tired I want to be able to park closer to the doors.
I feel guilty for any time I have it easier because of my CIDP and I can’t get over that.
Thanks for your help and support
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