Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Cold Sensitivity

Discussion in 'Pain and Inflammation' started by Laluzhiker, Jan 18, 2018.

  1. Laluzhiker

    Laluzhiker

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    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
     
  2. Busson

    Busson

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    Your pain seems very extensive. Parts of what you describe reminds me of Raynaud's Disease in which the cold causes the capillaries in the skin to spasm further cutting off blood flow. It is very painful.

    I had this induced by medication and just putting my hand under water from the cold tap would be really and truly painful. A friend had full blown Reynaud's and, like you, had to have a heater on all the time in the bedroom.

    You can take meds to help relax the capillaries and I think one was a calcium channel blocker anti-hypertension med but your doc is the person to advise.

    There's probably a lot of other things also going on in your case.
     
  3. Laluzhiker

    Laluzhiker

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    Thanks for your reply. I think you are right in that it's Raynaud's, and/or it's cousin Chilblains that is the source of the pain. I believe my cells are so compromised that the pain is magnified significantly. I've known I've had Raynaud's for a long time, through numerous experiences while mountain climbing, but something took me over the edge starting in 2014. This is just one symptom of several, causing me different kinds and magnitudes of pain. I appreciate the input on the channel blocker and I sent a note off to my doctor. I have to be able to control this. I'm having another bad experience starting last night. It's hard for me to even get my head around this. Does this get better? I can't remember?
     
  4. Laluzhiker

    Laluzhiker

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    Can I ask whether your friends condition affected his entire body, no area spared?
     
  5. Busson

    Busson

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    I don't think so. My friend is female so I don't know about, ahem, male extremities! However fingers, toes, nose, etc were affected and this is not "feeling the cold" but a horrible sensation triggered by cold.

    I don't think Reynaud's is due to cell damage (I don't know about chillblains) but more to capillary over-reaction.
     
  6. Laluzhiker

    Laluzhiker

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    I see. This is again, everywhere, including my chest. If it weren’t in my core, well I guess it still would be bad, but maybe not insanely bad. I know Raynauds. I used to mountain climb in very cold conditions and the pain afterwards , especially in the shower, was intense, but it ended. I thought it was normal for the longest. Then again I was doing that sport to take my mind off of other pain. This, I believe is Chilblains at its source of the pain. My doctor has done the tests, such as the OAT, and others that showed my cells, and every body system (at the time) was very compromised. We ‘may’ have dealt with the digestive, but I probably didn’t do my part even there well enough. I also have a heavy metal (gadolinium) floating in there, which might be the source of the pain I was dealing with. I did, along the way, have my serious viral episode. I guess my point is my cells are compromised, and I believe there can be several catalyst the can rule the roost, that may just be an annoyance to others, and maybe even me 5 years ago. Now they are killing me. I’m not sure if this is going to end.
     
  7. Busson

    Busson

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    It sounds like there's a lot going on with you. Could be several factors all adding up. Personally I would deal with as many suspected problems as possible. Strange you get chest pains because ennervation to sense things like cold is sparse if not absent. Im not saying you dont sense cold but maybe it is not due to coldness.
     

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