Body heat with Fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK

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Body heat with Fibromyalgia

Suz23 profile image
30 Replies

Hi does anyone suffer with excessive heat and how do you deal with it please?

I cannot get a normal body temperature at the best of times. This heatwave has increased this problem even more.

It was bad enough before. However, now I am having to shower through the night as I am soaked through.

Can anyone help me please?

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Suz23 profile image
Suz23
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30 Replies
Dizzytwo profile image
DizzytwoModerator

Good morning Suz, the heat I am sure is hitting everyone very hard right now. Both me and hubby are suffering very badly and he doesn't have fibro.

To day is going to to get hotter I believe. Then hopefully it should start to cool down.

I would recommend keeping all the windows in your home closed as well has the doors. Opening them only let's in hot air. I also have all the blinds closed. I won't move out doors until its cooler in the evening to sit in the garden for a short while.

Also if you have a fan try putting it in your bedroom on an evening and placing a bowl of ice water in front of it to help blow a little cool water vapor about the room.

The only other thing is I try to stay as still has I can through out the day if possible till this heat wave passes. And please try not to get too anxious both things drain us and makes us feel very hot.

Hopefully it will be cooler very soon for all of us. Take care xx

Momo

Suz23 profile image
Suz23 in reply to Dizzytwo

Thank you so much for that advice. I never gave it a thought about the windows and doors. Hope you both have a better day today xx

Peder profile image
Peder

Hi... awful isnt it.....my heat regulation is all over the place as it is, let alone a heatwave..cool at the moment as i have a fan in an aircon room.. but when i walk out of the office, its like a sauna..i dont think ill get away working in a pair of shreddies and nothing else, might upset the other people in my office, n especially no good when im a police officer..lol

in reply to Peder

Hi

My dermatologist prescribed me oxybutynin which has helped with me sweating. Everyone take care. Love and hugs Lynne xxxx

Peder profile image
Peder in reply to

:)

Suz23 profile image
Suz23 in reply to

Thanks Lynne, I will speak to my GP about this cream xx

in reply to Suz23

Hi

How are today?

It's in tablet form. Love and hugs Lynne xxxx

Suz23 profile image
Suz23 in reply to

Thank you Lynne. I was really bad with it yesterday. Let's see what today brings xx

Dizzytwo profile image
DizzytwoModerator in reply to Peder

😲😲😂 Today is the hottest day in July ever recorded and I can believe it.

Suz23 profile image
Suz23 in reply to Dizzytwo

I know but im just as bad in the winter. 😞

Dizzytwo profile image
DizzytwoModerator in reply to Suz23

Oh dear, I am sorry to hear that.

Patdoyle profile image
Patdoyle in reply to Suz23

I suffer badly with temperature control and get really hot even on the coldest winters day. In bed it’s unbearable. Sleep with just a sheet over me and still get hot. All very strange. I’ve got a chillow pillow under my pillow to put my hands on when I overheat. Helps a bit.

Suz23 profile image
Suz23 in reply to Patdoyle

Thanks for your reply Pat. What is a chillow pillow please?

Patdoyle profile image
Patdoyle in reply to Suz23

It’s a thin plastic covered pad you fill with water and there’s something inside it which activates cold. It’s £15.96 on Amazon. I keep mine under my pillow and put my arms under when I get hot. It helps a bit for me.

in reply to Patdoyle

Hi yes same here real decent proper cotton pillow case and sheets sometimes work as head is so hot when trying to sleep even in winter.

Suz23 profile image
Suz23 in reply to Peder

I know how you feel. I am in a meltdown as son as I walk away from a fan. Everyone in our office are the opposite. Even in the winter when they are cold I am still in meltown!

RayB profile image
RayB

Suz23 last summer I was murdered with the heat I could hardly move,, in the last 7 or 8 months I have had quite a dramatic weight loss and am now down to aroung 8.5 stone and my body fat is very low,, extremely low!

I am just about comfortable at present,, it's great but I am dreading the winter,, mind you my feet still feel freezing,,, they are not freezing,, they just feel as though they are cold to me,,, even today!

Patdoyle profile image
Patdoyle in reply to RayB

Same here Ray freezing feet and overwhelming heat. Doesn’t make sense does it.

RayB profile image
RayB in reply to Patdoyle

Pat,,,, Raynaud's !

Patdoyle profile image
Patdoyle in reply to RayB

I suggested this to my consultant. She never commented. She said my hands would go white not bright red like mine.

in reply to Patdoyle

My friend has it and hers are sometimes white. Love and hugs Lynne

RayB profile image
RayB in reply to Patdoyle

Pat, I think it's always useful follow up any statements that Dr's make like that by asking directly,, then what is it,, and if you don't get a direct answer then rephrase and keep the questions going until you get a two way comunication going. Why am I experianceing this,, what should I do about it,, what could be causing this problem. Don't be brow beat, just sit looking waiting on an answer. They seem very ready to say it is not something but reluctant to say what it is or could be,, so we are left eternaly sitting in limbo waiting while we think our heads going.

After all what is the point going to these people if they can't answer questions, gone are the day when people feared questioning Dr's they have lost the God status they held in days of old. All that nonsence started dying in the 80's and is just about burried now. They are just doing a job and we are the client with the problem.

Patdoyle profile image
Patdoyle in reply to RayB

I quite agree with you. I get so worked up and anxious when seeing a specialist that I usually make a list and either pass it to them or use to question them. I do sometimes forget exactly what they answer to the questions and wish I could take a tape recorder in with me.!

RayB profile image
RayB in reply to Patdoyle

Pat you can,, just put your mobile phone on to record before you walk in the door!

I think everyone with fibro falls apart with a we bit of pressure,, I think the years of atitude from Dr's,, don't help,, you know the head's I'm right,, tails I'm the Dr with the stethiscope round my neck to prove it and I've got the big chair and did I mention that I'm right. I think everyone should take a list of points and even expand on those points on the paper.

You could also if you really want, ask if the Dr minds you recording as you find attending very stressfull and can't remember a thing when you walk out the door,, on going over it you may learn alot it's surprising what you can miss.

Suz23 profile image
Suz23

Thank you for your reply. I do understand that my weight may have something to do with it and have been addressing that. I exceise 3-5 times a wk to try and lose weight. It's a struggle though as I have a knee (2 failed knee replacements on the same knee) and hip problem. I do try as I'm a positive person and try to overcome most things.

Hope you find a way around your problems of being cold.

caninecrazy profile image
caninecrazy

hello Suz23 , i too have a broken body thermostat. been like this for last six years, i can just about cope with it in winter but summer is horrid. i take cool baths, wear cotton loose clothes but my body heats up and my clothes are damp from sweat within an hour. very embarrassing to say the least. been told i am peri-menopausal too so that's probably contributing too. i read all your replies with interest as really would love this problem to ease :( x

Suz23 profile image
Suz23 in reply to caninecrazy

Thank you for that info, it could be very helpful.

I have read this evening that a TENS machine is very helpful for the body pain side of Fibromyalgia. I know it's a different subject to the body heat dilema, but hopefully it will help people. I have ordered one this evening. Once Ive received it and used it for a week or so then I will post my results for anyone who may be interested in buying one

Bemoresquirrel profile image
Bemoresquirrel

I know this is a bit late, but it might be useful. I have trouble controlling my temperature and find a magic towel aka ice towel or self cooling towel, very helpful.

You wet the microfibre towel with water, doesn’t have to be cold, spin it around a couple of times and it goes really cold! No idea how it works, but it’s lovely draped around your neck or over legs, if you’re sitting. It works really well! Amazon & Ebay sell them, I’m sure other places to do. 🙂

honeybug profile image
honeybug

Hi Suz23 😊🌿🌸🦋

I’m sooo sorry about your heat/body temp regulation problem. You didn’t say if you have a known diagnosis that causes this.

I have have autoimmune disease AI that destroyed my thyroid. Plus I am 1 of only 3 globally diagnosed with the rarest form of IEM inherited Erythromelalgia. Plus I have RP Raynauds Phenomenon they all play havoc on my body temp regulation.

I was finally diagnosed with IEM in 2014 by double DNA testing.

I spoke with the ⭐️ Neurologist about my inability to tolerate heat and she placed me on Paxil 20 mg daily. It has been a lifesaver for me as it keeps even the worst heat attacks on my head and airways at bay. This meds was originally made to help with mental issues. However over time as with all long existing meds they are used for problems other than their originally intent. The plus is that I have such a calm peace effect from it too and other than the fatigue it created during the first month I’ve had no side effects.

Since were all unique beings your symptoms probably are different than mine. I know that this global warming is making conditions unbearable especially if you aren’t privy to aircon.

When you are burning up inside there is a real danger of heat stroke and death when we can’t cool our bodies down.

Where are you located in the ? UK ?

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

Suz23 profile image
Suz23

Thank you for your message.

I have been diagnosed with Fibromyalga, which I presume is the reason for this. Although, I haven't asked my GP if this could be why? I am going to phone to ask for an appt to discuss with him.

I am located by the Yorkshire coast in England. Which I would think probably makes these extreme weather conditions more bearable for some people. Sadly not for me 😞

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