Mild hypothermia? : Hi there I've... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Mild hypothermia?

whirlygirl16
whirlygirl16

Hi there

I've recently been told i have FND and was wondering if any one else keeps having a drop in body temperature and going into mild hypothermia?

27 Replies
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Hi & Yes. I am always feeling cold, much more than I ever used to be. Much more on the top half of my body.

FND & TBI do not help as my brain is not doing the do. I have a weighted blanket for comfort and warmth. Even on a hot day i still use it. Some might get too warm but I love it.

With brain issues it is finding ways to cope and crack over the issues without letting it bother you. I get really frustrated and angry. I am trying to manage this with hints and tips around the house or on my phone etc for info and reminders.

I wish you well.

Hi there

Thanks ever so much for relying to my post.

Its a horrible thing this FND and it's a comfort to know other people are going through the same issues. They thought I had MS or another neurological disorder, after being under an orthopedic surgeon for my spine issues, because I had a positive babinski sign and romberg, so I was referred to neurology and it was a bit of a shocked when he said it was this condition as I'd never heard of it before 😳

Do you take your temperature when you get cold? Mine drops to anywhere around 33/ to 35c and I start to shiver and have to add layers of clothes to bring it back up and I sit under an electric throw I have, it's like a chill from inside my body, is your's the same?

I wish you well too

Yes it is a chill from inside.

It is a shock to get any diagnosis and I am poorly from many ailments. It is better knowing than not. What helps is the help you get, advice etc. Now you have it diagnosed. I thought i was going mad and even thought I was faking my problems it had been that long.

Many consultants want you out of the door asap , where as most others are more in depth and refer you to other people. Even if it is not their thing they refer you to the necessary consultant, department etc.

Anything bothers you explain it and get referred, do not take no for answer.

Keep warm & safe.

That's very true

I live in wales and there isn't any help here on the Nhs for FND. The neurologist just told me to look up neurosymptoms and that was that! He was a lovely neurologist and he did order a 15 min brain scan because of the postive babinski sign but that didn't show anything. Like you I'm getting so many symptoms and feeling so uncomfortable with bladder and bowel problems and have been told I may have to start self catheterization because of urine retention. I have been referred to urology though, just to check it's not cauda equina syndrome as I do have a lumber spondylolisthesis.

How are coping day to day with everything?

Best wishes

Yes I feel cold from my waist down, I even go numb and the only thing I have found to help, is lying in bed with an electric blanket on low- to slowly warm up. It happens even on a warm days but mainly when it’s cold and damp! The numbness is a horrible deep cold feeling, painful and uncomfortable☹️

whirlygirl16
whirlygirl16 in reply to Borrow

Thanks so much for replying back to me

I too use an electric blanket to get my temperature back up, as it can drops to anywhere about 33 to 35 and i start to shiver. It's a horrible condition this FND and I never heard of it before going to see the neurologist 😨 How long have you had FND if you don't mind me asking? I've only just been told i have it

Best wishes

Borrow
Borrow in reply to whirlygirl16

Well I was diagnosed 2016 but I’ve had the condition much longer! I too had never heard of FND which I think is a major problem both for medical personnel and the patients who have it.

How can the condition be helped/ sorted if no-one has heard of it!!!

Any way back to you, as a newbie read about the condition in reliable medical web sites and ask lots of questions but always remember because it is our brains that are at fault, others with FND will have different symptoms and different degrees of symptoms, none of us are exactly alike! We can however help and encourage each other😀

Good luck

Jane

whirlygirl16
whirlygirl16 in reply to Borrow

That's very true! People need to understand it and hear about it, as it can be so disabling. I'm so glad to be a member of this site now 🙂 where I will take your advise to read and ask questions so thank you so Jane

Best wishes

Shirley

Borrow
Borrow in reply to whirlygirl16

😀

This may be of absolutely no use to you. As I have mentioned before I have come to understand that the basket of symptoms we call FND is more than one “thing” with way more than two or three triggers. That said I have discovered that for me my symptoms are best explained as arising out of uncontrolled anxiety. Panic attacks. What you think is a panic attack is a very small subsection of what panic attacks can actually entail. They masquerade as a confusing variety of symptoms or groups of symptoms. In my case I very rarely have what I refer to as the “oh my God I can’t breathe I’m drowning” terror in my conscious brain. Which is what most people think a panic attack is. Instead my body acts out while my mind remains eerily calm or more often as not royally pissed off because I’ve lost control of my body.

OK, that said, inexplicably cold appendages are one of the manifestations my panic attacks upon occasion hit me with. My research into this explains it as a result of fight or flight syndrome where the body pools blood into the central core “in readiness” - and temperature drops everywhere else. Massive adrenaline release kicks off this process - like when you’re frightened, you shiver? Because of the disconnect between my conscious mind and my unconscious, I can be consciously not frightened while my body is terrified. Took me a long time to understand this process

Now then, lots of other things can cause the sudden chills - serious things totally not FND - I wouldn’t just assume it’s a panic attack. However when it happens to me I go through all the possibilities and when I’m left with the possibility of an panic attack - in my case that’s generally what it is. So I crawl into a bed with a heating pad and give up on whatever it is that’s been setting me off and I begin to feel better. After all the panic attack is the unconscious mind telling you to stop doing whatever it is you’re doing to set it off.

Thanks for your rely

I do suffer from panic attacks but usually when I'm out of the house and that's because I have social anxiety and agoraphobia but to be honest this feels different but you might be right as the brain is a funny old thing

Best wishes

🙂

Oddly enough, my blood pressure only this week I did not feelso great, checked it in morning 118/75, later on dropped to 90/61 my lowest yet. And i monitor it daily, if you increase your potassium and magnesium levels your bp normally goes down.

That what mine keeps doing and sometimes it's as low as 84/56 it's so worrying and like you it's when i don't feel well which is most days now 😞 so I check it daily as well

Your BP is way lower than mine, I've discovered through experimenting that I need more b6 b12 folic acid and niacin, which a blood test confirmed. My BP goes higher in the winter when I get really cold. I now spend most of those months in Spain. I have applied to Headway for my brain injury card....so if I get lost anywhere, hopefully some kind soul will point me in the right direction 😁 preferably with a glass of red wine!

😁 🍷you are so lucky to be able to go to Spain.

I was checked for B12 and came back normal. I've not been checked for B6 though so might mention it to GP

Best wishes

My argument was, politely said, " is it borderline ok or ok ?, Every measurement has a tolerance, I knew from my hospital in London some people need higher levels of certain minerals than others. So I spent around a year researching how to get more of what I needed personally. The b vitamins all needed supplementing, and I can physically feel if I have not got enough, especially brain fog tells me 😁. Spending plenty of time in the sun is very beneficial, but does highlight how many of us are vitamin d deficient. Living in the Northern hemisphere depletes us of much throughout our winters, even a healthy diet is not enough for some.

I agree with you about vitamins. I had a very low vit d for a few years without knowing and it played havoc with my health, so I now have to be careful not to become low again, it's funny how much it can affect your heath so much being deficient in one vitamins or mineral

Yes, and also, I eat more greens, especially spinach, have lots of garlic, love smoked mackerel and boiled eggs, cut out bad fats and,no sugar and recently reduced carb intake. It is a constant battle on top of having a brain injury with fnd, and meanwhile living a relatively normal life 😁where I live on the North Kent coast, I'm 3 minutes from the beach, with fresh air, plenty of sunshine in the south and great seafood 🍷

You are so lucky to live by the coast, I'm not to far from the foreshore about a 20min car journey. I think a sea view would do wonders for anyone.

This FND is such a strange condition but I agree with you about eating healthily, it does make a big difference

Sun is out, people getting back to normal ish, my consultant called and said see you next year, hopefully 🤞

That's good news so hopefully things will be back to normal and you'll get to see him or her then, so yes fingers crossed for you 🤞 Yes the sun is back and out which makes you feel better 🌞

Have to work now 😐 enjoy your day

Thanks and you too 🙂

Hi, also I have noticed the last couple of years I felt colder, now I have 2 different digital thermometers, and only last week I was 34.9 in the warm sun. I have also been more active through lockdown, which helped a bit. But still leaving myself post it notes every where to remind myself of doing stuff 🤯

That's exactly the same as me and I also have a terrible memory 😌 like you. It's such a strange condition. Do you get drops in blood pressure? I was getting spikes where my blood pressure would shoot up but now it's the opposite and it goes low

Hi I get both temperature shifts (mainly cold) and low blood pressure type sensations esp when stormy weather conditions i.e low barometric pressure. But I just have Motor FND.

FND is a nervous system condition, so it does follow that it could affect any part of the body at anytime? That said, you mentioned a physical spinal condition - I have read several articles on paraplegic spinal issues (bear with me, it is relevant) and they often get Autonomic Nervous System problems, because what is affecting the body and the associated sensations get confused and are not relayed correctly to the brain if at all. Had you thought it might be more a combination of spine and FND to give you such severe symptoms inc bladder issues?

BTW it takes years to diagnose MS correctly, because scans have to be taken at set intervals and symptoms checked for severity on a regular basis, because there are at least 2x main different types of MS?

Be kind to yourself, look for the calm in the storm

Hi there

Thanks for your reply

I totally understand what you're saying and it could well be due to my spinal issues. I will have to mention it to my GP and see what he says but with all that's going on with covid 19 I don't like to bother him, which I know is silly.

Best wishes

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