Temperature sensitivity

[Shel]

Hi, is it just me? I drive my husband nuts because the cold makes my knees hurt. Then as soon as it gets warm, I feel suffocated. It’s like I’m either freezing or needing air. I feel like the heat is hotter and cold is colder.

 

[JayCS]

Hi, is it just me? I drive my husband nuts because the cold makes my knees hurt. Then as soon as it gets warm, I feel suffocated. It’s like I’m either freezing or needing air. I feel like the heat is hotter and cold is colder.

I think it's most of us....
The cold makes the back of my neck hurt, light + heat of midday spring sun makes me nauseous.

I'm outside a lot now, for air and early daylight, but despite it being almost freezing this morning my hoodies tight helped.
For the rest of me I wear long johns under and rain legs over my jeans, my 5 pairs of socks as ever, winter shoes, a winter hoodie over a normal one, 3 loop scarves.
If necessary I take a hot water bottle with me outside, that's what I'd do for knees.
For nausea it helps to go in the shade, I think I'd try that for suffocation too.
Luckily my wife's so used to my complications, she sometimes reminds me of the fact that that is the new normal here.

 

[Shel]

Oh, I’m so sorry for you! Thank you for your words. I swear I’m going crazy with all the weird stuff.

 

[Gingery]

It’s May 3rd, a sunny afternoon, and I am so cold I am sitting in a hot bath. I cannot stay warm. I sleep with an electric mattress pad warmer, and constantly heat flax warmers for my shoulders.

 

[Shel]

Is this disease basically a dreadful combination of odd symptoms. Ugh. I’m sorry for you. My husband gets so excited for warm temperatures. I actually get anxiety because I know I’ll start itching from the sun and feeling like I’m suffocating.

 

[Amesalot]

Is this disease basically a dreadful combination of odd symptoms. Ugh. I’m sorry for you. My husband gets so excited for warm temperatures. I actually get anxiety because I know I’ll start itching from the sun and feeling like I’m suffocating.

I also get anxious thinking about the summer heat coming. At least when it’s cooler I can bundle up. Luckily where I am it doesn’t ever get brutally cold as Jay CS described but I still get that feeling of cold where you can’t warm up. I also have Raynaud’s so that doesn’t help with warmer up. On the bright side, I always have ice packs with me in the summer I call my hands my ice packs. Also I feel going through menopausal changes doesn’t help. Not sure what age you are, but perimenopausal symptoms can start surprisingly early, like in your thirties. If you have any questions about that please ask. I went through early onset menopause and my doctor at the time really didn’t want to believe that’s what was happening. So I’ve done a TON of research on the subject. Sorry for the tangent, but it could possibly be another random reason for the hot and cold sensitivity or why it’s gotten worse.

 

[Shel]

Thank you. When my symptoms began, after a gallbladder surgery, I was also going through menopause. I also was thinking it could be that. Or perhaps after menopause, my body reacts differently to temps. Is that a thing?

 

[Amesalot]

Yes that is definitely a thing. During menopause (the first year without a period), hormone levels fluctuate. All estrogen levels and progesterone levels decrease while your FSH (follicle stimulating hormone) and LH (luteinizing hormone) increases. Theses changes lead to vasomotor symptoms, among many other things. Vasomotor symptoms or hot flushes can begin in perimenopause, up to 10 years before a woman’s final period, and last throughout menopause and into postmenopause, which many people don’t talk about. Whereas menopause is the first year without a period, postmenopause is the time one year after your last period and beyond.
Vasomotor symptoms, including hot flushes and temperature sensitivity, usually lasts 1-2 years after menopause, but can last up to 10 years. Unfortunately they don’t completely understand the cause of all these vasomotor symptoms but assume most are due to wild fluctuations in hormones.
Sadly not much research goes into menopause, peri- or post-, and therefore many doctors aren’t equipped with the knowledge to accurately treat their female patients. It’s no surprise that most people don’t understand menopause. How could we if even the professionals don’t?
You have to be pretty fired up and have a good chunk of spare time to research and read medical journals, as I was, to try to get a handle on what might be happening with your body. And how many women can actually do that?
I really hope some of this helps you.

 

[Shel]

Thank you for taking your time to share with me. I always try to link all of my symptoms (which are all over the place) together into one cause. Most likely, they come from a few different issues.

 

[JayCS]

I always try to link all of my symptoms (which are all over the place) together into one cause. Most likely, they come from a few different issues.

Yeah, I get both parts.
Realizing I'm "dry all over" (skin, mouth, eyes, throat) brought me to sicca syndrome and made me research that a hyperacidic stomach according to ayurveda is dry, too little water. But grouping them didn't lead me to a viable cause (e.g. Sjögren's) and didn't help improve, so it stayed each symptom to its own.
But GABA helping me in many areas pointed to low serotonin, then having MCAS the (antagonistic) relationship between serotonin and histamine (and cortisol) made me find/try out quicker that GABA protects me from histamine reactions. And interestingly, a few MCAS experts relate fibro to MCAS.
The 'moving' = alternating local pains we have will be connected via fibro, but that doesn't help us solve them, we still have to treat each singly. But realizing that they can be connected via relief / bad posture etc. can help us to watch for their interactions, which may influence how we solve them a little bit (but not that much, I don't think).
So trying to link does make a bit of sense, and we don't know how much and at which level until we've tried.

 

[Shel]

Thank you so much. Well said. People with good health have zero idea of what we exist with. I wish you a good day

 

[Amesalot]

People with good health have zero idea of what we exist with.

So true. At the same time, a healthy person experiencing a bad headache or stubbed toe could feel that pain as a level 7 for them because they have fewer past experiences to compare it to, like you and I do. I know my definition of levels of pain has changed since fibro entered my life. It can be tricky sometimes to show grace to healthier people when they complain about pain in their lives but each person has their own perspective.
I’ve found it takes extra patience and understanding for me to communicate freely with “normies”. Even then it can be tricky since many of my (our) symptoms are foreign to them. So it truly takes patience and understanding from both parties to work smoothly. Therefore I have a very small inner circle of healthy people who actually know what my symptoms are. Do they completely understand them? Well that’s a different story for another day

 

[Shel]

Thank you! I needed to hear that. I know I need to work on being more compassionate towards my friends who complain of the TEMPORARY discomfort of a common cold, or even a knee surgery. You are completely right-it’s the only pain they know. I am very fortunate that the symptoms I experience are dull most of the time and only limit me because I’m exhausted. I am thankful that i don’t have extreme pain.

 

[Gingery]

But GABA helping me in many areas pointed to low serotonin, then having MCAS the (antagonistic) relationship between serotonin and histamine (and cortisol) made me find/try out quicker that GABA protects me from histamine reactions. And interestingly, a few MCAS experts relate fibro to MCAS.

I have to investigate this correlation!

 

[JayCS]

I have to investigate this correlation!

- gladly ask, if you don't get far enough, or search here for other posts on it! (Just don't confuse the supp / neurotransmitter / amino acid GABA with the gabapentoid meds gabapentin & pregabalin.)