I’m sorry I haven’t written for a while, but life went a little crazy for me and I simply stopped doing almost everything. When I last wrote, I was full of beans and convinced that I had found the answer to the intense cold I was feeling. Ever since winter arrived, I had felt nothing but cold. Not the normal cold that is linked to the outside temperature, but a far more intense and at times, even painful cold. It didn’t make full sense to me, but I was colder than I had ever been this early in winter, and I knew I was driving Adam mad with my insistence that there had to be a draft, a vent left open somewhere, or that sealant somewhere had failed. There were a few things about it that were a little odd, but I just kept brushing aside, something I now know was a huge mistake. It didn’t seem to matter where I was in the house, including in my bed, my legs and my back were always cold. At times, it was so painful that I found myself on the verge of tears and unable to think of anything else. All I wanted was a heat source, one that was close to my legs, and my invention had to be the answer for my legs, my back, well I was going to deal with that one later.
The first couple of days that my heater was in place, I was so pleased with it, that I ignored what was happening elsewhere. After weeks of feeling nothing but cold, that warmth around my legs was magical, even though it was just during the day, somehow, it was enough. Then came the first night when I couldn’t bear for Adam to remove my socks. The night before, my feet had been so cold, that they woke me several times as they had actually become painful. I thought that my socks would be enough to make the difference, but they weren’t. That night was the first that I added my dressing gown over the duvet, trapping just that bit more heat as the cold had spread right up to my hips. It was also the night when the cold in my back jumped up from vagueness to intense. The worst of it was right down my spine, fading slowly towards my sides. Just as oddly, and as isolated, were my hands, somehow, my arms felt fine, but my hands were just as frozen as my feet. The longer I lay there, the more I was aware of the fact that when the cold was at it’s worst, my skin was burning. In addition, in my hands and my feet I had sharp tingling, yet still, I was missing the clues and blaming it all on the change in the weather.
On Thursday night things were so bad that I was up either 6 or 7 times. Each time it was the same thing, my body was telling me that I was freezing, and each time, I made some adjustment of some sort to my covers and clothing. It was one of those adjustments that actually managed to get me thinking, and to realise that it was actually impossible for the temperature change outside, to have this effect on me. I used to have thermometers in almost every room, but now, we only have two and of them, only one that I trust. I had actually that afternoon ordered a couple of new ones, as I couldn’t make sense out of what was going on. Our home has never dropped below 62 degrees for as long as I can remember, and although this is winter, according to the weather man, it really hasn’t been that cold out there. We’ve only had three nights below zero, so far. I had added two layers of clothing over the duvet trying to trap the heat and when I woke, I was still freezing, but I was also sweating buckets. Not possible, not right.
Friday morning found me still frozen, tired and weepy. When the district nurse arrived she knew almost straight away that there was something wrong with me, and when we started to chat, the tears flowed. Overnight I had pieced things together, thanks to something that happened while I was once more trying to sleep. Almost my entire body, piece by piece, started to burn and tingle. I wasn’t cold, what had been happening to me over last few weeks, was all down to my nerves and now, they were working flat out. I had already thought about calling the doctor, but I really couldn’t think of any drug that I wasn’t already on, that would help. The nurse convinced me that calling was a good idea, as there might be something that both of us didn’t know about, so I called.
Adam picked up the prescription as soon as he finished work and brought it home with him. I knew Pregabalin wouldn’t work immediately, but I honestly did feel a change that night, a good change. It hadn’t gone but the most severe effect seemed to be dampened down. Living with PRMS means your nerves have the right to do whatever they want to. I’ve gone through spells of unexplained pain, pins and needles and so on, but never so severe, and never so well disguised as something totally explainable and believable. I know from what the doctor said that it would take time, several days before I felt the full effect, but it was just so good, to not have a searing line right down my spine. Until you have lived with something like this, you have no idea, just how it can drive you into madness. I have spent the last two weeks, doing nothing but adding layers of cloth and searching out anywhere that there what the slightest chance of a little bit of warmth, including sitting against the oven, after Laura had cooked my lunch. Somehow, the change in weather conditions had triggered the whole thing, then, my body just did the rest. At the worst, I couldn’t think clearly, move or even make sense of what was going on around me, and it pulled me down and down until I had become a blubbering wreck. I just hate to think what would have happened to me, without the drugs that are still slowly improving things day by day. I can’t wait for the day that I wake up, and I actually feel the 64 degrees that my new thermometer says our house is on average throughout, and the what should be, a glorious 74 degrees, right here at my desk.
Please read my blog from 2 years ago today – 22/10/2014 – Please stop
Two Rooms Plus Utilities 
Hoping you receive full benefit of new meds quickly to re-educate your nerves to restore them back to normal working order. Must be dreadful to feel continuous extreme painful cold like that. ☕️🔥💤❤️
LikeLike
The worst bit was not feeling good in front of a roaring fire, well, it might be gas, but close enough normally 🙂
LikeLiked by 1 person
I hope the meds continue to help and that you are warm soon. It’s good to have people listening & hearing your experiences but sometimes you just want to go to bed without socks and a hat. I will be thinking of you.
LikeLiked by 2 people
I’m down to one pair, so I’m getting there ☺
LikeLiked by 1 person
so what had been the matter? Jessica cannot regulate her body temperature and needs to ask me whether she is hot or cold else she may become ill from too many or too few coverings but what did they say caused your pain and reaction? Hope things continue to be just right.
LikeLike
It’s just due to my MS, I’ve suffered for years with odd sensations, this appears to be one my nerves system thought up and held tightly too. If it had come and gone after a few hours, I would have clocked it, but this was extreme and to be honest, is still there, just a bit more controlled. It could take a couple of weeks for them to actually behave as they should.😕
LikeLiked by 1 person
Minds of their own I guess.
LikeLiked by 1 person
Pingback: Tip to hell | Two Rooms Plus Utilities – Platypus Lady
Wow! I was a little worried after your last post being out of kilter, and the reality is you were having an episode. I am so glad you got it figured out! I hope your life gets some balance back. Seasons change seem to affect us all in one way or another it seems. Hugs
LikeLike
Wouldn’t it just be wonderful, if they cooled us in summer and warmed us in winter 😊
LikeLike
Glad there is a med you can try. Hoe by the time you read thisbyou gave gotten some relief.
LikeLike
I’m getting there thanks 🙂
LikeLike
So glad there are meds that can help.
LikeLiked by 1 person
Was thinking about you just today, as I realized we hadn’t heard from you for awhile, so I wondered how you were doing. Glad you found something that can help. I hate being cold!
LikeLike
It has to be the most miserable feeling in the world. This though was driving me mad, which isn’t fun either, believe me 😌
LikeLike
What an experience! That sounds so uncomfortable, baffling, and difficult. What mysteries our bodies can be. I’m glad there’s good potential for relief with the medication. Wishing you well!
LikeLiked by 1 person
Thank you 😊
LikeLike
Aweful! But you are starting to get the benefits of outsiders. The carers are people who can take themselves out of a situation and judge it completely by the facts, and can Guatemalan how serious the new situation and circumstances are. And can encourage you to let them help you. Well done.
LikeLiked by 1 person
We got there, but it hasn’t been a pleasant journey 😦
LikeLike
God, I feel for you and I’m so glad the new drug is working. Although a different process because it is directly related to the actual temperature, I know exactly how painful to the point of madness being cold can be. I have central heating and a coal-effect gas fire but I still haven’t got as much warmth as I need in the new house to ensure I’m in no pain. I know I’m going to have to get something else and it’s going to have to be a fan heater because a calor gas unit is too difficult and painful to turn on and off. Maddening because that would be much the best. Take care, Pamela. x
Sarah
LikeLike
The drugs are slowly making life liveable, but I do still have an issue with the temperature of our home. I like you don’t like being cold, that’s why I went on so long trying to find an answer. Most would be happy at 64 degrees, I still want it a bit warmer. Sat here with my transferred heat from the storage heater, means I can bump it up to 76, but I still have an issue with the rest of the house. Poor Adam is walking around half naked, he can’t stand it as it is, and I feel guilty about wanting to boost it even more.
I hope your fan heater helps, I suppose you can at least move it around, and you don’t have somebody telling you to switch it off 😊
LikeLiked by 1 person
Not anymore, I don’t, although to be fair the ex was pretty good about not complaining. It’s when others visit and can’t bear the heat that I can’t bear it! My comeback is always, well, I don’t want to be in pain or die. 😀 Good luck with getting it all as you need.
LikeLiked by 1 person
Thinking of you
LikeLike
Hello Pam.was thinking of you today,I found an hot water bottle that one plugs in and heats up and lasts for 7hours I think it said. No water to scald you or messing in the microwave.Its in a catalogue called solutions.Thankfully you are getting over your episode.Im thinking of trying one,my hands are always cold and it also works as a muff.I just hate the cold full stop.!!Take care of yourself,look forward to your next twt.Sending love and thoughts Nx
LikeLike
I do actually have two of them, but they are too directional, great if your hands are cold useless when it is all of you. Unlike a real hot water bottle the heat doesn’t radiate well, possibly because they are not as hot in the first place. I bought them last year when I had just cold feet and hands. As I spent so much of my day then typing, I have to say I gave up on my hands totally. I hope, though, that they work for you 💞
LikeLike
Gabapentin for the last 2 years for nerve pain and it works okay for me but my mother still suffers. I’ll have her ask about Pregabalin. Thank you for mentioning it and if the cold still bothers you at night, have you considered an electric mattress cover? I found that to be much better than an electric blanket for comfort.
LikeLike
I’m on the highest level of Gabapentin already, that is why the doctor suggested adding the Pregabalin. For me I found over the years that I have had to raise and raise the Gabapentin, so if I were you, just in case, take a note of it for yourself 🙂
LikeLiked by 1 person
My heart goes out to you. Chronic illness, pain, mental anguish and all the other aspects of being sick can be so challenging over the longer term. From personal experience I also found being stuck at home also adds to the sense of isolation and loneliness so I think that blogs like yours are such a wonderful way of connecting and sharing with others who might be going through a similarly challenging time. I hope your doctor is able to find the right protocol for you. I don’t know if you’ve come across a wonderful documentary called “The Connection” but it might provide some truly wonderful scientifically based information and hope to those suffering with chronic health issues. The link is: https://theconnection.tv It features people who have suffered with Lupus and an emergency doctor who developed MS and found a way to overcome all his symptoms. The creator of the program has also written a book about her journey with Lupus. I hope this might be of help to you. ❤
LikeLike
Hello, Pamela. I recall once a couple of years ago (in Japan) when the Winter felt so unusually cold (in the house.) Low temperature had an icy “biting” effect that was detectable in the bones, and shivering seemed to have no effect on restoring a sense physical equilibrium. Some things we use here to deal with cold are “kotatsu” ~ that’s a small, pluggable, shin- to knee-height table with heater on the underside of table top. The other thing is a “yuutampo,” or hotwater container. It gets filled with boiling water and placed at one’s feet or wherever you feel it is most cold. I hope this was informative; take care of yourself. Love, Sandra_
LikeLiked by 1 person
Thank you, I guess my invention of a few weeks ago is similar to Kotatsu, the heat source is at about the same level and the heat comes up to me, from under my desk. The biggest difference, is mine is free, just a tin, a brick and some sand to transfer the heat from the storage heater to me. 🙂
LikeLike
Oh no, I’m sorry you are also afflicted with PRMS.
I can definitely relate. Everyday it’s something weird, and the pain is neverending. Though my GP still seems convinced that MS doesn’t cause pain.
Anyway, I hope you’re not adverse to a cyber hug from another PRMSer in Canada.
LikeLike
We are so rare that I’m glad to have found another, although, I wouldn’t wish this on anyone. In five years living online, I’ve only met two others. I’ve now been ill for over 30 years, so there is little that this condition can throw at me, that could possibly surprise me any longer. My doctor seems to be in the opposite mind set to yours, everything that ever happens to me, has to be caused by my PRMS. You name it, it always the same thing at the core. Mind you, all the specialists he has sent me too, always agrees with him. 😒
LikeLiked by 1 person
Well then, I’m glad we found each other! 😀 But I agree, I wouldn’t wish this life on anyone.
I’ve also been sick for most of my life, but wasn’t correctly diagnosed until 2012. (Even then it took another two years for them to decide it was PRMS.) The diagnosing neurologist was actually shocked that no-one thought to do an MRI long before then.
I’ve long since passed the point of caring which medical problem is causing which symptom, I just want relief! 😥
LikeLike
Our stories are so similar, I too had years of no action, then and ENT consultant did that oh so important MRI. He told me I either had MS or, I had survived an incredible number of stokes. The following test confirmed it and here I am. I sometimes wish that I could go back to all those doctors who told me there was nothing wrong and ask them, if this is still in their opinion, nothing 😒
LikeLiked by 1 person
Hm, let’s see if my reply will post this time. Bad phone! 😉
Agreed, this isn’t something I would wish on anyone.
I’ve also been sick for decades, but wasn’t diagnosed until 2012. None of the specialists I’d seen until then ever thought it worth doing an MRI. By the time they finally did, my results looked like swiss cheese.
I’m very glad to have crossed paths with you.
LikeLike