Cold sensitivity and its etiology--need to solve this urgently

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I have had far increased cold sensitivity this year, especially since my surgeries. And increased tiredness that is different than the usual me/cfs fatigue and pem recently.

The two obvious culprits are my fusion hardware and the anemia that I seem to have developed recently especially post surgeries. But I hate having another medical mystery on my hands and am too tired to figure it out. I had an extra surgery so that makes three in three monyhs, bc I had a site infection, and now I have a picc and IV antibiotics , but the cold sensitivity started a bit before that
I need outdoor air, and in the past I've camped in freezing conditions while sick, so I don't think its inherent to me/cfs. I don't have hypothyroidism according to the latest tests, although was on steroids at the time of those tests which I've heard can artificially suppress the

Its just deeply depressing despite seeming like a small symptom bc I love being outsoors, and winter , and camping and I don't just love those things, I all but medically need them. The warmest places in winter in the US are largely the places with some of the worst air--Miami/urban/suburban Florida in general, San Diego , San Francisco and Pacific northwest.
Even if it wasn't medically necessary and I could just live in Mexico one of my dreams has been for awhile to retire to a cabin in the mountains with lovely seasons including winter. I don't think I can stand this. And its putting my recovery from surgery on hold sort of as I spend so much time not outside which exacerbates symtpoms and I move around else and have no !motivation to do PT as I won't be hiking in the Rockies or living there even
Please help fix this
Oh also its not cold hands or feet, its not peripheral only. Its like when I get cold it goes to the center of me like in my chest and hell and all through my body and I compulsively shiver so much it makes me tired, and my neck spasms in an awful way
 
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Have any people who live in cold places and do mold avoidance post fusion surgeries experienced this?

Has anyone here experienced this and overcome it?

Is it plausible its anemia ? !y anemia isn't severe necessarily but my doctor thinks its notable
 

lenora

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Plenty of hot water bottles that would take care of cold everywhere in the body.

Getting your latest blood tests together probably isn't a bad idea. In her book, Julia Rehmeyer (sp?) lived in the desert and in a trailer for a very long time. If you could get in contact with her, you may get some helpful answers. Do you have a trailer? If so, you should probably sleep in it at night (b/c of wind)....and leave the outdoor living for daytime. I've had periods of teeth chattering for 24 hrs. or more at a time....simply couldn't warm up. Maybe drinking hot water would help, long underwear.....become a settler (in your mind) and see what you can use. Use plenty of scarves around your head neck and face, if necessary. Wool's good...a lot of the manmade fabrics don't dry off the way wool does. Mittens instead of gloves keep your hands warmer. Don't even think of cold beverages....room temp. at the least. I'm sure you've tried all these, though. Yours, Lenora.
 
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Hip

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Could it have something to do with the surgery? It says here that:
Problems with temperature regulation happen in people with cervical and high thoracic spinal cord injuries.

A quartz infrared heater might help. This provides radiant infrared light heat, rather than heating the air, so you can sit outside and still feel the radiant heat if the heater is within half a meter of your body. You should be able to pick one up for around $40.
 

Judee

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Refeeding syndrome? Perhaps boron went low.

Ken Lassessen had a nutrient site where he talked about Boron and low temps in ME/CFS but he's taken the site down now. :(

I do feel like boron helps me with temperature. I just don't take it that often so end up being cold almost all the time.

Anyway, just a thought.
 

lenora

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I don't know what happened to my suggestion of an electric blanket inside the trailer. That will warm your entire body. That's with the assumption that there is electricity nearby. I have never heard of a quartz heater, but something else new that could help.

@Hip....interesting about the cervical & high thoracic injuries. The exact location of my last brain surgery. All of these little facts that help explain a lot. Yours, Lenora.
 
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I don't know what happened to my suggestion of an electric blanket inside the trailer
Oh I dont have a trailer yet. This is more about being insanely cold even when I'm not in freezing temperatures , and it seems like something's really wrong, ita not mild enough that I'm happy with just treating the symptom. I mean I can layer up a bit but having awful, exhausting spasms in my neck for so much time after getting exposed to cold, feeling like it goes profoundly deep in my body ... all that is a problem
Could it have something to do with the surgery? It says here that:
I'm guessing the hardware is part of it. But what you linked is talking about actual permanent damage from spinal cord surgeries so I'm doubting that happened... they did monitor my nerves and only one of the surgeries involved cutting through my dura
 
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Plenty of hot water bottles that would take care of cold everywhere in the body.
Yeah this is what I do when I'm inside or when I am outside butcamping, I'm used to strategies for warming up, but I want to solve this problem. It's not like I'm just as cold as I should be, its extreme and it is coming with other symptoms as well, so I think I need to address it. I would like to talk to julie but I dont have social media and shes not on this forum, is she?
 
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Btw all, I have some form of anemia but we dont know if my iron is low , so what are other causes and treatments for anemia. And it seems like that could explain newfound tiredness and coldness and even my heart palpitations.

I mean I ran barefoot in the snow at 8000 feet a couple years ago and felt fine and now I'm curled up in bed feeling cold if theres a 50 degree draft?

It doesnt make sense.
 

Hip

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I'm guessing the hardware is part of it. But what you linked is talking about actual permanent damage from spinal cord surgeries so I'm doubting that happened... they did monitor my nerves and only one of the surgeries involved cutting through my dura
I am thinking more in terms of post surgical swelling or inflammation, which might temporarily impinge on nerves. If I remember rightly, this swelling or inflammation occurs for some while after the op.

But I've forgotten much of the CCI stuff, as I have not looked at this for about a year, and my memory is getting worse and worse.
 

Shanti1

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Anemia of any type can cause sensitivity to cold since oxygen is needed to make ATP, which provides the energy to keep us warm. Finding out if the anemia is related to iron deficiency or something else seems like the place to start.

Retesting thyroid TSH and T3 and T4 could be done if your last test was a while ago.

The hypothalamus also helps with temperature regulation and there is known hypothalamus/pituitary dysfunction in ME/CFS. You might want to check your cortisol levels (preferably via saliva, but if not, in blood). Low cortisol secondary to hypothalmic/pituitary dysfunction can lead to cold intolerance. I wonder about this in your case because you mentioned that you were on steroids at one point and because of the stress to your body of the surgeries. I know you are probably too tired to read, but below are some studies that relate to this if you do want to take a look.

Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (Stanculescu 2021)
https://www.frontiersin.org/articles/10.3389/fmed.2021.628029/full
Dysfunction of the Hyopathalmus-Pituitary-Adrenal (HPA) axis has been documented extensively in ME/CFS patients since the early 1980s (5263). Researchers have observed decreased baseline cortisol levels, blunted HPA axis responses to physical and psychological stressors, reduced HPA axis responsivity to provocation tests (such as CRH and ACTH administration), and a heightened inhibitory feedback loop (consistent with a higher abundance and affinity of glucocorticoid receptors at the level of the pituitary and hypothalamus). Strikingly, the magnitude of HPA axis dysfunction becomes more pronounced with illness duration and is associated with symptom severity (43, 64).
A compromised paraventricular nucleus within a dysfunctional hypothalamus: A novel neuroinflammatory paradigm for ME/CFS (MacKay 2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6291860/
A dysfunctional hypothalamus, causing HPA-axis disruption, might account for aberrant neuroendocrine messages to the pituitary gland and adrenal glands and help to explain the increased frequency of urination experienced by ME/CFS patients and ‘hypocortisolism’ often reported in ME/CFS.
The role of hypocortisolism in chronic fatigue syndrome (Nijhof 2014)
https://pubmed.ncbi.nlm.nih.gov/24636516/