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- 7
Hi All,
I see ME/CFS symptoms can include cold sensitivity. What happened to me a week ago is a demonstration of this, I would think. This isn't an one off, of course, but it's hard to remember all the horrors of the past. This last time started as the facility where the FM support group I was leading had a room mix up ending us up in an unheated room. Though some members were aided by the single floor heater they provided, I being the trooper I am, sat on the opposite side of the room, probably in the 50s F for two hours as my hands turned white and red.
Once I made it home I spent the next 6 days in bed, at least three of those days I was praying to die. The pain was a freezing pain, like my core was covered with liquid nitrogen, through my arms and legs, every nerve ending in my body screamed pain. The last time I remember having pain like this was last winter, and I had learned, then, to tell myself it will end. That was all I had. I did this for a while this time, but I have to admit I lost hope. I lost that belief that it would end, and that's why I was praying to die. I believe a number of people on this forum can understand this.
The main source of my pain was my chest, hands, feet, thighs, arms, stomach, calves, groan, and my hips, but the inflammation was literally everywhere including my face, ears, scalp, back, and the rest of me, including the nerves inside of me. I could feel my stomach and intestines inflamed, not because of food, but just because of what was happening to my body. I'm certain my heart was in pain as well. I have to believe there is damage going on here, and this is a source of my heart disease. This pain is not touched by Fentanyl or Lyrica or Cymbalta, and overall I would have to put it at 8 and into 9 level at times.
On the sixth day it suddenly stopped. Now, I wasn't just lying there praying to die. I had been taking measures, which were to heat myself up to uncomfortable levels, and putting up to 5 different concoctions all over myself. This included a cream specifically for Chilblains, also magnesium, Arnica cream, and other creams I had read about in the past that helped nerve pain. How this Chilblain is manifested beyond its normal condition, I don't know, but it seems it's constantly on. Once this internal pain stopped, I was totally in shock and couldn't even realize what was up or down. Talk about PTSD. I had been tortured for a good 5 days.
And by stopped, I mean the depth of it stopped, the internal blizzard was over, but the root of it is still there. It was still snowing. All my parts described above still burn, but especially my feet and hands, and if I allow them to get cold, i.e. go outside without gloves, it all starts going quickly down that rabbit hole. It's happened once, and I had to run my hands under hot water for 5 minutes to stop it from happening. I have to keep my feet under a Far Infrared Bio Mat to keep them hot, but they still feel cold. I have a heater running on high next to my bed. I am back to my level 5 pain level, and happy to be here. I stay bed bound a good 98%+ of my existence these days. It's just the way it is.
Kind Regards,
Matt
I see ME/CFS symptoms can include cold sensitivity. What happened to me a week ago is a demonstration of this, I would think. This isn't an one off, of course, but it's hard to remember all the horrors of the past. This last time started as the facility where the FM support group I was leading had a room mix up ending us up in an unheated room. Though some members were aided by the single floor heater they provided, I being the trooper I am, sat on the opposite side of the room, probably in the 50s F for two hours as my hands turned white and red.
Once I made it home I spent the next 6 days in bed, at least three of those days I was praying to die. The pain was a freezing pain, like my core was covered with liquid nitrogen, through my arms and legs, every nerve ending in my body screamed pain. The last time I remember having pain like this was last winter, and I had learned, then, to tell myself it will end. That was all I had. I did this for a while this time, but I have to admit I lost hope. I lost that belief that it would end, and that's why I was praying to die. I believe a number of people on this forum can understand this.
The main source of my pain was my chest, hands, feet, thighs, arms, stomach, calves, groan, and my hips, but the inflammation was literally everywhere including my face, ears, scalp, back, and the rest of me, including the nerves inside of me. I could feel my stomach and intestines inflamed, not because of food, but just because of what was happening to my body. I'm certain my heart was in pain as well. I have to believe there is damage going on here, and this is a source of my heart disease. This pain is not touched by Fentanyl or Lyrica or Cymbalta, and overall I would have to put it at 8 and into 9 level at times.
On the sixth day it suddenly stopped. Now, I wasn't just lying there praying to die. I had been taking measures, which were to heat myself up to uncomfortable levels, and putting up to 5 different concoctions all over myself. This included a cream specifically for Chilblains, also magnesium, Arnica cream, and other creams I had read about in the past that helped nerve pain. How this Chilblain is manifested beyond its normal condition, I don't know, but it seems it's constantly on. Once this internal pain stopped, I was totally in shock and couldn't even realize what was up or down. Talk about PTSD. I had been tortured for a good 5 days.
And by stopped, I mean the depth of it stopped, the internal blizzard was over, but the root of it is still there. It was still snowing. All my parts described above still burn, but especially my feet and hands, and if I allow them to get cold, i.e. go outside without gloves, it all starts going quickly down that rabbit hole. It's happened once, and I had to run my hands under hot water for 5 minutes to stop it from happening. I have to keep my feet under a Far Infrared Bio Mat to keep them hot, but they still feel cold. I have a heater running on high next to my bed. I am back to my level 5 pain level, and happy to be here. I stay bed bound a good 98%+ of my existence these days. It's just the way it is.
Kind Regards,
Matt