Share Your Chronic Fatigue And Heat Intolerence:

[Guest humanb4monitor]

..........and their worsening. Mine are over the TOP! CFS especially since surgery.

Pleeze share. I need you

[Chaos]

Oh yeah. Last summer after surgery the fatigue was really bad and that was before I got the post-op infection and mono. The heat intolerance wasn't too bad only because I was in such bad shape I couldn't get out in the heat much. Lying around the house with the cooler on made summer almost tolerable.

Sorry you're having such a rough time of it right now.

[sue1234]

Heat intolerance is a worse symptom for me than the POTS itself! And that is only because I don't think POTS will kill me, but the heat intolerance I think can! I live in the deep South and constantly worry all summer that my vehicle will beak down and I won't have an air conditioner to keep me cool. I don't sweat hardly at all, so would not be able to cool myself down.

I have read recently on a celiac board that one person went gluten-free and their heat intolerance went away! I was surprised that that could be a factor, as I have researched all reasons for heat intolerance, and have never ran into that. That almost sounds hopeful, as I have the anitbodies for gluten intolerance and am planning my move to gluten-free.

[Troy]

Overheating is my worst symptom, in fact I think I may be one of the worst cases out there due the circumstances that caused my POTS, most people with POTS complain about heat intolerance but mine goes way beyond that, when I have heat intolerance its actually a good day for me, because I suffer with much worse then that on daily basis.

On a bad day I find myself with hyperthermia in the middle of winter. I have been hospitalized several times simply due to the fevers I have. Whilst my parents have the heater going in their room I have the cooling system switched on in mine but even that doesn't work sometimes because its such a cold winter here in Australia at the moment that when its anything below 59F my cooling system fails to switch on, so instead I often go outside topless into the winter cold which is currently around 46.5 F temperatures at night attempting to cool down and even that feels insufficient so additionally I often spray myself with a pump spray filled with water. At the same time my fingers and toes are so icy cold they feel numb whilst the rest of me is feverishly burning up. The worst is going under a shower and feeling all the weird sensations of hot and cold at the same time due to the massive differences of temperature and hot spots throughout my body.

I generate so much excessive heat that often I can't even sit back into a seat or cushioned chair or lay down on my bed because of the amount of heat that gets transferred from my body into other objects and causes me to feel extremely uncomfortable and overcooked.

[Guest humanb4monitor]

((Chaos)) was it hard to get THAT NAME HERE!

Thank you all

BUT what can we do? Mine was never ever in existence UNTIL POTS got worse.

^#$%@& ]

I lived at the beach, travels, LIVED.

I 1st noticed the weakness it caused in maybe 2002 but in 2003 it was bad bad. Didn't know about the POTS byt hen yet.

What an aweful thing for us and worse for some of you.

Now.....I can be feeling so weak anyway, go out and get the mail when it is hot and humid, and come back in a lie down so fast I almost FALL.

How much more can it take??

What can we do? I have 2 of those scarfs with the polymers that you put in water and keep cool and tie around your neck.

Some talk about ALWAYS ALWAYS drinking ice cold water but we are supposed to do that anyway.

Does sthis mean that my need for a beach in SC or Santa Fe will only be a dream now that I feel like I do not even have a brain left?

Surgey fall out! Like that isn't enough.

My whole body is living my sleep disorders and if I have JUST gotton Fibro...I will be...like....over the top sad.

I truely cannot think anymore. Like it hurts to not be able to think ANYTHING normal----LITTLE TINY things---are out of reach. I have nothing already. My shoulders HURT writing this.

Thank you and please do not go.

BUT CFS is not even ....no way to even descide it.

I am sooooo sad. Broken.

Screw you LIFE!

I did NOT ask for this OR what made it worse: EVIL PEOPLE! That is not drama--it its trauma.

I googled "surgurical effects on CFS " and it is there

(((( hugs ))))

[atomic811]

I use to shower daily, sometimes two times a day. Now I am lucky is I shower once every 2 weeks. Even mildly warm water brings my heart rate into the 140's sometimes higher. When I am in there I have minor dizzy spells and when I am done for hours even sitting my heart rate is about 110. I am completely whipped out.

I run the a/c window units all the time. I think the person I live with is cold. Sometimes I feel cold and when I do I am thankful because I feel better even if my heart still races.

[Birdlady]

Heat intolerance is bad for me too, but I can be tachying away on a cold but HUMID day. The humidity is a huge factor for me. Like yesterday, it was about 65 F degrees, rainy and cloudy but since it was nearly 100% humidity I was a wreck. Today it is roughly 74 F degrees but the humidity is lower at 66% so I don't feel quite so terrible. Now if I sat in the sun I'd be miserable, so I'm smart enough not to do that. We'll see how I feel as the day goes on. I just woke up a few minutes ago...

I wear short sleeved shirts year round regardless of the temperature outside. I can't risk overheating even in the winter. Some times stores over pump the heat and that's not a good situation for me. This way if that happens I can take my coat off and I don't have to worry about a long sleeved shirt keeping me from cooling down quickly.

I suffer constantly from the heat because we do not have air conditioning in our house. We have a few window units, but they don't cool nearly as good as what a whole house air conditioning system would. It's not uncommon for the indoor temp to be HIGHER than the outside temp.

This might sound crazy but just eating or drinking something really hot can set me off!

[Guest tearose]

Heat Intolerance symptoms...

I am more intolerant of cold.

I find that I shiver below 70 and am best at 72 degrees. I can tolerate heat up to about 88 and then I am suddenly overhot.

Hard part of heat intolerance...Going from the heat of the summer air to an air conditioned environment and suddenly loosing control of my bowels. I have NO experience worse than this. I also have no more ego.

POTS symptoms flare when my body is struggling to digest food, do a task, fight a virus or cold...this is not limited to heat though.

Being so hot that I can't think and become so numb that I am still. I do keep hydrated and keep up with electrolyte levels.

I am more prone to sound sensitivity when too hot.

My POTS is more manageable in Spring and Fall.

I guess I am so use to all we do to manage I don't think about it much anymore. I just plan and prepare every day.

[potsgirl]

I moved to Tucson for work about 6 years ago, before my diagnosis. Now every summer I don't go out unless I absolutely have to between the hours of 10 am to 8 pm. If I'm outdoors in the 100+ heat for more than a minute or two, I feel incredibly sick and like I'm going to pass out. I'm waiting to be able to move in a year so so when my boyfriend can retire. I used to hate winters back in the Midwest, now I almost long for them!

You are definitely not alone!

[Guest humanb4monitor]

(((GROUP HUG)))

At least people are also sharing what can help which is why I came back here.

Bad bad sad sad day. My sleep was so bad that woke is such such pain.

That is what I get for 'wanting something' today.

I was on the couch this morninh and a neighbor knocked. The HEAT and HUMIDITY is on it's way back. I only stood in the doorway to talk to her and it slammed me, Within 1/2 hour I was back in bed and asleep for 2 hours.

I won't live like this. That is where I am now. Angry. And at 3 corrupt docs that took good docs away.

I am having Cleveland Clinic Call back tomorrow with an appt. Though I could go to the POTS guy, I am gonna start with the Neuro/sleep dept.

I am sorry to be so negative but I never ever ever saw this after surgey. I had plans for after surgery an this was not on the list. I also can not even admit what I could do to people who have kept me from care, even though the years brought more illness in POTS and everything else.

I had energy. I had life. I had.......ME.

If these illnesses/handicaps were proven to kill us or cripple us with time as some others, at least we would know what to expect.

I get noise issues too when other stuff is going on. Bad bad bad

The best weather in this country is the Pacific Northwest. TRUE.