Chilled from the Bone Thanks Fibromyalgia
I dislike winter, winter for me is an awful time.
It is the time my mental health takes a dive – below its normal level of hating me. It is the time of year my suicidal thoughts worsen, the chatter in my head gets louder and it is the time of year I just want to give up.
In the past few years, I’ve had to add new challenges appear, one of which is the cold.
Through my childhood, adolescence and early 20s I hardly ever felt cold.
In fact, it was a running joke if someone was cold, they would come and sit next to me as I radiated warmth.
That slowly started to change after I was diagnosed with ME and Fibromyalgia.
Now there is never a time of year for me in which I feel comfortable. You see my body is unable to regulate its temperature.
So if it’s summer I am too hot and in winter too cold. Just stepping outside can trigger my downfall, because as soon as my temperature begins to change it just keeps on running away with itself.
Something new this year however, is the feeling of being chilled from the bone outwards. You might think I mean chilled to the bone, but I don’t.
I mean my bones feel like they are ice, radiating out towards my skin. Yet if I get someone to touch my skin, which I assume must be cold, to others it feels warm.
It is the strangest feeling and near impossible to get warm from. I’ve tried hot water bottles (I even have an electric one), blankets on top of blankets, extra layers, all the normal things, but the cold just won’t go away.
In many ways, I am having to get to know my body again, as an ever-changing being. Something which I can never rely on being the same from one moment to the next, let alone day to day.
It is confusing, unsettling and hard to come to terms with. Something I am sure I am not alone with feeling.
So to everyone suffering this winter, for whatever reason, I hope spring comes soon. The longer, warmer days, I am sure will be a blessing for many of us in different ways.
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Thank you for this!! I keep reading so much about the cold extremities thing and not much on what I experience. It literally feels like my bones are ice and the only thing I can do to warm up is to take the hottest bath possible. I hate that other people have to deal with this, too but I’m glad to know I’m not alone.
It’s horrid isn’t it – I’ll ask Ash if I feel cold and he says no you feel warm but I am so chilled inside. I’m so sorry you have to deal with it as well.
In my experience of Fibromyalgia, in my case secondary to sleep apnoea, there are many symptoms other than the pain that folk expect that are easily overlooked by GPs etc. Nearly all the symptoms of ME are also shown by Fibromyalgia so I’m not sure how one could diagnose ME and Fibromyalgia together, but without effective treatments it probably doesn’t matter much. Among these are the carpal tunnel like symptoms of pins and needles and numbing of both hands and feet, and so it would make sense that other nerves such as those controlling thermo-regulation can be effected too. We need much more research by neurologists but it will have to be funded by charity as without drug treatments it will never be funded by the pharmaceutical industry.
Most definitely with both Fibro and ME there is so much going on, sometimes it’s hard to know what is linked to it and what isn’t and to be honest, I probably contribute things to it without thinking these days if it actually could be something else. I hope more research is done as I think there is a lot to learn.
I have just been diagnosed with Fibromyalgia, so has my daughter, been seeing what is what with this condition, I am getting a bit confused with different thingd
Hi Paula, if you want to drop me an email I would be happy to talk to you. I’m by no means an expert and of course everyone feels it slightly differently but I can try my best :).
I’m so sorry you are suffering from the cold. I find it a struggle to get out of bed on cold winter mornings, and often don’t get up till midday. I’d probably stay in bed all day if I was on my own, but luckily my cats insist that I get up to feed them breakfast. I also find the low light levels have an adverse effect on my mood, however, I find that using my SAD therapy lamp on my desk really helps. I notice a real difference on days when I have not used the lamp the previous day.
Hopefully Spring will be here soon and will bring you some relief.
I’m the same with being in bed, there’s some days I don’t get out of bed and other days I’m in bed until evening. I just.. It’s hard. Bring on spring hey!
My wife and my daughter suffer this disease, both have the same problems you have mentioned, we had minus 7 degrees the other night and the only way they could get warm was to sit in front of the oven. Having 3 young children who wanted to go outside and trying to explain why they cannot go outside to play with them and build snowmen was heartbreaking. My daughter also has Me and being only in her early 30s depression is becoming another issue, and because these are invisible diseases, she has to explain her disabilities to everyone.
My sympathies are with you
It is such a cruel thing isn’t it, so hard to explain those who don’t get it. I am so sorry you have two loved ones who have to live with it and I can’t imagine how it is for your daughter to not play with her children, I am sure though they love her and adore her anyway. x
Sorry to hear that you are suffering this winter, sending love and hugs to you. I struggle with my mental health in winter – often feel like wanting to stay in bed all day. Can relate with the negative thoughts xx
Sending hugs. Wrap up warm and enjoy time with your family xx
Thank you so much, mental health is awful over winter isn’t it. Not a nice time of year at all, or for anyone. Sending the same back to you and if you ever want to chat, just let me know.
Shame we all can’t just pack off to a warmer place till it blows over Ive always hated the cold and it worsens my heart failure condition you never stop shaking
I know it would be so much better, I’m sure I need to migrate lol. x
So well put Sarah! From one Fibro warrior to another, it is often so hard to describe what it feels like to others who have no idea what we go through in our daily battles. Nice warm baths with aromatherapy oils/bath salts/ bubbles help me daily. Great article thanks! Keep focusing on spring just around the corner, my spirits always lift when the first daffs show their beautiful yellow flowers (although in truth it is just the thought of chocolate Easter eggs coming soon! LOL)
It is so hard isn’t it – I don’t think anyone can adequately describe what it is like.
It is so nice when you see those first flowers isn’t it – it has to come soon now! That and the chocolate 😉 x
Hi Sarah,
I can relate totally although my hands, feet and nose is freezing. My hands and fingers are ice white they are so cold. Unfortunately this makes doing anything so hard. And of course this leaves you feeling sad and feeling very low.
I hope you feel better soon big hugs
Nuala x
Hi Nuala,
Oh it is so hard isn’t it :(. I’ve had to stop doing most things as my fingers and hands just won’t do what I want them to anymore. I hope through this post lets people know they aren’t alone anymore! x