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

frozenborderline

Senior Member
Messages
4,405
If you've had surgery, then an anaesthetic could have written off your B12, causing you to become deficient if you weren't beforehand. I think this may be at least one of the keys to why you feel as you do right now.

The other thing is thyroid problems. I have hypothyroidism, the first symptoms I had included feeling very cold in my extremities and also incredibly tired. You might want to check out your levels.
My thyroid levels were the firstbthing I thought of and are all normal .

B12 levels are normal. And I thought only nitrous , which they don't use for my anesthesia , lowers b12. I've never heard of fentanyl or protocol affecting it.
 

CSMLSM

Senior Member
Messages
973
OK good then, B12 sounds good and should be fine. Thyroid was related to someone else and I was drawing comparisons between conditions and how they can be similar.

When you say your levels are fine are you sure of this, (is a can of worms) please tell me the level of B12 you have and the range used by the Lab that did the testing if you have the information please. If you are willing to share that personal data (non-members maybe able to see).

The surgery, posibble Covid/Long Covid and your stressful situation will be the driving force behind your increasing sensitivities.

I myself had more severe ME/CFS caused by a back injury involving a van door handle and the middle of my spine. Wind swung it into my back. last day of work about 20 years ago.

Opioids can have affects to the immune system that can affect this too but my recollection of this right now is vague.

When I read what you write, the way you write it you remind me of me. I can feel the cognitive dysfunction in how you type your posts, the missed letters not noticed and see the effort to communicate with us.
If I say something that seems unthoughtful please tell me so I know and can reassure you I am just trying to help. I get how you are feeling right now, I have been there for so long in the past.

If you want to talk about whats going on in your life and you want someone to listen and think that will help you, please just message me and I will be here asap.
 

CSMLSM

Senior Member
Messages
973
One last thing opioid use over prolonged periods can sensitise the nervous system and actually cause more pain (nerve sensitivity) in the long run - cold sensitivity!
I take it that, because you are using fentanyl you have been on opioids for a long time relatively.
Most definitely a factor I would think.
 

frozenborderline

Senior Member
Messages
4,405
(nerve sensitivity) in the long run - cold sensitivity!
I take it that, because you are using fentanyl you have been on opioids for a long time relatively.
I am not using fentanyl . I brought it up bc it's used in general anesthesia
 

frozenborderline

Senior Member
Messages
4,405
Do you have any recent thyroid labs you can share?
I don't have them memorized, but I know a lot about thyroid issues and how things can be overlooked with the free t3 or t4 as long as tsh is "normal" , which is also a range that doctors have changed over time. But I am sure the t3 and t4 are well within range and so is the tsh, if anything it's on the low side but not out of range ... Certainly not hypothyroidism though, I wish it was, that would be simple to treat. I've had labs for that drawn repeatedly bc that would be my first thought and bc the hospital steroid use could've artificially lowered tsh even if I was hypothyroid. but by this point I can be pretty sure of things
 

CSMLSM

Senior Member
Messages
973
I am sorry to intrude I just wanted to help. I see I have been recieved wrong. I apologise.
 

frozenborderline

Senior Member
Messages
4,405
I am sorry to intrude I just wanted to help. I see I have been recieved wrong. I apologise.
Dude I don't have any problem with anything you said, I don't know how I offended you, I just replied with the truth, that I'm not on fentanyl
 

frozenborderline

Senior Member
Messages
4,405
Ha! I hate to burst that bubble but no it's not necessarily simple to treat. I won't get on my soapbox though or else I may not get off!

It's good you have been able to rule out problems in that department, though. :)
It is simpler to treat imo than the more complex secondary metabolic issues standard in me/cfs. Even if you have to use some special mixture of t4 and t3 you van still usually treat thyroid issues with medicine. That makes it more simple than much of me/cfs
 

CSMLSM

Senior Member
Messages
973
Dude I don't have any problem with anything you said, I don't know how I offended you, I just replied with the truth, that I'm not on fentanyl
I am new to forums and mistook someones message for me and got the context mixed up sorry.
This is my first time using a forum anywhere and its taking me some effort to orientate myself.
Sorry Dinosaur in this respect
 

CSMLSM

Senior Member
Messages
973
Hi frozenborderline its nice to meet you my name is Daniel, l am sorry about before.

You are not on fentanyl that is a good thing I am relieved.

Dangerous stuff and I thought it may have been adding to your sensitivities.

Have you tried Turmeric. It appears to contain what I use to treat myself in a reasonable amount and appears to be why people are benefitting from it, although ingestion will not treat the nervous system or the brain because of being metabolised by the liver first. But it may offer you something others can vouch for being affective in some circumstances, would certainly improve bowel health at least.

I use a sublingual route of administration to bypass the liver and get the treatment to the brain and nervous system.
I suspect taking turmeric subligually will turn your mouth an amazing colour :)

Daniel
 

Jadzhia

Senior Member
Messages
148
Location
England, UK
It is simpler to treat imo than the more complex secondary metabolic issues standard in me/cfs. Even if you have to use some special mixture of t4 and t3 you van still usually treat thyroid issues with medicine. That makes it more simple than much of me/cfs

Yes, point taken. Still, it's worth pointing out that you have to be able to get hold of T3 (almost impossible for some of us other than by using internet sources that can dry up at any time) and hypothyroidism is often ignored by the medical profession (in the UK anyway) as doctors are so ignorant about it and people are often left to suffer without any treatment for years because their labs are 'in range' even though they clearly have multiple symptoms. The ranges are a joke, anyway. 6 years on from my diagnosis I have to source my own T3 and am still trying to improve my health, sadly so far haven't managed it, which has led me to wonder if I have CFS, I certainly get PEM now (has developed in the last couple of years) and a bunch of intolerances I didn't have at the outset. Who knows, maybe hypothryoidism that isn't treated promptly and properly may lead to the development of other metabolic problems and thence to CFS/ME. Could be one route to that destination (though certainly not the only one). Anyhoo, I digress! I hope you can figure out what's going on with you.
 

CSMLSM

Senior Member
Messages
973
Yes, point taken. Still, it's worth pointing out that you have to be able to get hold of T3 (almost impossible for some of us other than by using internet sources that can dry up at any time) and hypothyroidism is often ignored by the medical profession (in the UK anyway) as doctors are so ignorant about it and people are often left to suffer without any treatment for years because their labs are 'in range' even though they clearly have multiple symptoms. The ranges are a joke, anyway. 6 years on from my diagnosis I have to source my own T3 and am still trying to improve my health, sadly so far haven't managed it, which has led me to wonder if I have CFS, I certainly get PEM now (has developed in the last couple of years) and a bunch of intolerances I didn't have at the outset. Who knows, maybe hypothryoidism that isn't treated promptly and properly may lead to the development of other metabolic problems and thence to CFS/ME. Could be one route to that destination (though certainly not the only one). Anyhoo, I digress! I hope you can figure out what's going on with you.
Jadzhia I would like to say you are a well informed person who seeks truth and fact. I hope we can become friends in the future.

Daniel
 

frozenborderline

Senior Member
Messages
4,405
Still, it's worth pointing out that you have to be able to get hold of T3 (almost impossible for some of us other than by using internet sources that can dry up at any time)
I got a bunch of it from.mexico as cynomel and additionally got it prescribed in a smaller dose by a compounding pharmacy. I've experimented in depth with it and definitely enough to rule it out as my main issue, also have researched it a lot and read lots of the materials by proponents of the theory of thyroid issues being behind most health problems, such as ray peat , or the guy (I forget his name) behind the super low dose T3 method.
 

frozenborderline

Senior Member
Messages
4,405
The ranges are a joke, anyway. 6
I dont think the ranges are totally meaningless, I think they may be too big, or small depending on whether we're talking about tsh or t3 but it would be bad and dangerous to totally ignore them, you could give someone hyperthyroidism
 

frozenborderline

Senior Member
Messages
4,405
Who knows, maybe hypothryoidism that isn't treated promptly and properly may lead to the development of other metabolic problems and thence to CFS/ME. Could be one route to that destination (though certainly not the only one). Anyhoo, I digress! I hope you can figure out what's going on with you.
Or maybe it's an effect not a cause. Paul cheney notes that he thought hypometabolism was a protective response to oxidative stress and that for this reason he doesnt treat mild hypothyroidism in me/cfs patients , and doesnt find that treating it would help from clinical experience.
 

Jadzhia

Senior Member
Messages
148
Location
England, UK
Or maybe it's an effect not a cause. Paul cheney notes that he thought hypometabolism was a protective response to oxidative stress and that for this reason he doesnt treat mild hypothyroidism in me/cfs patients , and doesnt find that treating it would help from clinical experience.

Yes, interesting perspective! I will look into that further, thanks for mentioning it!
 

CSMLSM

Senior Member
Messages
973
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
Hi again dude just had to share this snippet with you, I hope you find it interesting to your situation.

Caryophyllene helps to improve cold tolerance at low ambient temperatures. Wild giant pandas frequently roll in horse manure, which contains beta-caryophyllene/caryophyllene oxide, to inhibit transient receptor potential melastatin 8 (TRPM8), an archetypical cold-activated ion channel of mammals.[15]


More in one of my threads just started on Caryophyllene. If you want to ask questions go there please,
so we can keep your thread tidy and not disrupted by me.

Daniel
 

frozenborderline

Senior Member
Messages
4,405
Hi again dude just had to share this snippet with you, I hope you find it interesting to your situation.

Caryophyllene helps to improve cold tolerance at low ambient temperatures. Wild giant pandas frequently roll in horse manure, which contains beta-caryophyllene/caryophyllene oxide, to inhibit transient receptor potential melastatin 8 (TRPM8), an archetypical cold-activated ion channel of mammals.[15]


More in one of my threads just started on Caryophyllene. If you want to ask questions go there please,
so we can keep your thread tidy and not disrupted by me.

Daniel
What thread, I am curious about this ...