Feeling Cold

[Paul_and_Sue_Wood]

All

Anyone have any thoughts on my Sue feeling cold all the time no matter how she is dressed.

We know she can't "feel" the cold or hot but she now feels cold herself.

Nerve issue?

Paul

[Gill-C]

Oh yes, yes and several more yesses!!

I cannot get warm whatever I wear and inside or outside the house. I am usually cold to the touch and to me it feels like it’s right through to the bone.

I have just assumed it’s a nerve thing or something to do with the mysterious autonomics!

Sadly no solution, but maybe others have. Laying in bed with the electric blanket on and a hot water bottle gives temporary relief but isn’t really a workable lifestyle 😁

[Derkie54]

Hello,My wife is the same, I turn up the heating and put 2 throw's on her when she's in her chair but she's still not that warm.

I just put it down to the MSA.

Take care

Derek

[Ruffner]

This is one of our biggest problems dealing with MSA and PD. My husband (MSA) feels cold all the time. He wears heavy pants and socks, two shirts (one flannel) and a down vest and hat in the house. We added an electric blanket a few months ago and that has helped a lot. Lately his feet have felt so cold that he complains it is painful. We keep our thermostat at 70F. He would like it higher but I can't tolerate heat. His neurologist says that this is common with this family of neurological disease and couldn't offer any solutions other than what we are already doing. Have you tried the electric blanket?

[Paul_and_Sue_Wood]

Thank you all.

I spoke to our GP today and we feel its a nerve thing.

I am upping one of her meds and will let you know how we get on.

Paul.

[ReverendBadger]

Even in a well heated room I can feel as if my whole body is cold but often the hands feel very cold and are indeed cold to the touch according to the wife but she says the rest of me feels normal. Puttting a blanket over the whole body helps but it takes a long time. If I heat the hands up, such as by sticking them under my jumper, things get better faster.

You could try experimenting by heating Sue's hands up independenly (bowl of warm water?) to see if that changes things.

[Paul_and_Sue_Wood in reply to ReverendBadger]

Hi Rev

I am wary of wrapping Sue up as she not actually cold and she could over heat!!!!

I am trying to manipulate her pain meds as she has a nerve inhibitor.

I will let you know

Paul

[Giovi1960 in reply to ReverendBadger]

Hello ReverendBadger , like you, I heat my hands up and I start to feel warmer all over. I wear those gloves that leave the tip of my fingers uncovered so I can do things. So far it works.

[sittingontheprom]

Bought the wife a heated throw - problem solved !!

[Schmall]

My husband has the same.I dread what our heating bill will be like when it comes but he just gets so cold. I don't have a solution but I'm interested in the comments below about it being a nerve thing. Luckily he has a neurologist appointment this month so maybe he can ask about it.

Other than that, we just tried adding layer upon layer to help. He has a couple of good blankets for his side of the bed and thermals which all seem to help. He borrowed some sheepskin gloves from a friend when they went out and they really seemed to work for him. It's a complex thing and I don't really have a solution.

[Rodjc]

I presumed it was down to failure of body temp regulation, so would be interested to hear if it's a nerve thing. It's a horrible feeling and can just come on even in a heated room, feel frozen to the core. Interestingly I was put on some new meds for tremor and ataxia and they seemed to help with not feeling as cold but after a month ended up in hospital with bad reaction to the meds so had to come off them and now the cold is back.

[SamanthaMSAT Moderator Staff]

Hi Paul & Sue,

The temperature regulator doesn't work in MSA, due to autonomic failure. People have difficulty maintaining their body temperature. Some people sweat more, which cools the body down, some sweat less. So lots of layers of clothing is the answer, to trap the air between each item of clothing. 2 pairs of gloves, socks etc. Heated blankets are nice, or heat pads, handwarmers etc. And the enironmental temperature may not affect the body either, so people feel cold when it is hot and vice versa. And as I am sure you all know, we can't rely on someone havng a raised temperature when they have an infection.

Kind regards,

Samantha. MSAT nurse specialsist.

[TK-67 in reply to SamanthaMSAT]

Mum stopped sweating at all. The heatwaves last year were a nightmare, the nursing home (even after her being there for 2 previous summers) couldn't get how difficult it was for her and that she wouldn't respond like other residents. She was far less mobile, speech more difficult and deteriorating quite quickly. I spent those days with her, getting fluids in when I could and stripping her off when the staff kept dressing her! The lack of understanding of this symptom of MSA was a constant struggle. Thankfully by keeping her calm, her brain decided the best way to deal with it was to sleep her way through. It was far worse for me!

[Paul_and_Sue_Wood]

SamThanks for the input.

There are two sides to this and both conflict.

Temperature regulation fails and this they can be cold and not show symptoms and in reverse be hot and not show it.

Opposite is they can feel cold or hot but not have symptoms. It's a minefield...

Sue "feels" cold which she never has before but body temp is normal hands and feet normal also house temp us set at 21c

So do I wrap her up, which could cause overheating?

We are upping her nerve pain meds to see what occurs as she is waking up at 4am achingly cold.

I will let you know how we go on.

[Kaye31]

same here. We use an electric cape. Let’s us know which meds please?

[Paul_and_Sue_Wood]

Hi all thanks for the input.My biggest concern was that Sue feeling cold was not actually cold and heating her up could cause her to overheat. She was in a stable temperature environment and hands and feet were warm to the touch.

This condition can be so complex!!!

We upped one of her meds which has helped immensely. She has always used a nerve pain inhibitors to manage her pain and these have increase over the years as the condition has changed.

The current tablet is Gabapentin and I increased it by a small amount each time until we get the balance right after consulting the GP. This works for Sue and has done so this time.

Thanks

Paul