Difficulty regulating body temperature. Does anyone else have this?

I can start doing some research on which facility might be best. Our insurance is getting ready to change with the 1st of the year and that might affect an appointment and December is already pretty much heavily scheduled. Thanks for your input, I appreciate you.

I have Raynaud’s Disease which causes body temperatures to drop. I’ve learned to cope with it. I wear layers of clothes, use electric blankets and I wear an Ororo vest most of the time. Surgeons wear these to stay warm when they are in surgery. These are fabulous! I also wear Little Hotties Adhesive Toe Warmers on my feet/tops/pants and put OCOOPA Quick Charge Hand Warmers in the pockets of my clothing. It’s been expensive purchasing these items, but they have certainly improved my quality of life. You should definitely check into all of these.

Dysautonomia is an autoimmune disorder. Most doctors aren't familiar enough with it to recognize it or treat it. My doctor cured herself. It requires sticking to an anti-inflammatory diet. If you check it on Google you can learn more about it. Good luck.

I have had this problem for years off and on. I also can’t have simple breezes like a ceiling fan on near me and showers can be brutal, causing me to resist proper hygiene in exchange for temperature control. I live with someone who can’t keep cool so I have had to take jobs in other homes so I can keep comfortable and not impose on my family. I have to wear layers no matter what and I avoid air conditioning and I wear a big sweatshirt and boots for grocery shopping and then I undress in the parking lot into my regular clothes and shoes. Sometimes I need flip flops after that exercise.

You learn to adapt.

Drs are only guessing. Mine is pretty spot on and said my current issue is probably related to fluctuating blood pressure and blood flow issues from my anemia/mystery illness.

I noticed my sodium levels are sometimes directly involved, so electrolyte management is helpful for minimizing problems.

I have to ride my bike or go for a long walk to warm up for the day and can get pretty sick if I don’t get it done.

Where I live sees the wrong solar so I see the sun rise and then it’s gone. Again, taking my physical self into the sunshine is practically life or death.

When I eat ice cream, I get those shivers and sick feeling to the point where I’m thinking I might be lactose intolerant as well(?)

My main diagnosis is anemic renal insufficiency.

Nobody seems interested to know anything more than that. It’s a chronic illness and it’s my job to minimize it.

Proper diet is helpful and each one of us has different foods and minerals we can and can’t have. I’m teaching the drs. They order tests and then we make little changes to improve life quality.

I can’t imagine having hypothermia at home all the time. But if that is possible, I bet I’ve had it. I definitely have a lot of bedding in different thicknesses and I wake up in the night sweating and or freezing.

But I attribute this to 1) toxins exit via sweat, especially when I have compromised kidneys and 2) I’m always low on sodium and have to supplement with salt tabs and sodium bicarbonate so I have more body odor than I did when I was not supplementing sodium. But I almost died as my organs were shutting down during a stint with a bad infection requiring serious antibiotic infusions for 6 weeks and I’m still recovering from that infection AND from the treatment for it.

I have to be very careful to avoid illness or infection and I’m labeled as a “frequent flyer” and “drug seeker” because I see drs often. With a chronic illness, I gotta keep advocating for myself. But I can tell my primary care dr has staff who will be happy when I finally pass away and quit leaving messages lol lol !

Please let us know what you find after your full bloodworkup and dr review of your results.

COULD BE ANYTHING

Hello and thanks for your helpful message. I just bought the toe warmers at Academy this weekend. Had never seen those before and actually bought them for an upcoming winter weather hiking trip. I told my hubby that it was critical for me to be and stay warm during this trip and so have invested in a really good hiking jacket, looking at gloves and glove liners next and maybe ski socks. I also bought the hand warmers too. I may never want to take all this off after my trip...lol. So, your Raynauds isn't just localized to your hands and feet then? Has a doctor given you any information on this and is there any medical treatment for it? Thanks again and I appreciate the pictures too.

I often feel hypervigilant when I get an infection of any kind: after 3 or 4 days, I get help. I did get the new covid just as the vaccine came out and got Paxlovid right away and I had none of the long effects like those I had the first time around. I agree that a morning walk or exercise sets up your metabolism (?) so that there is less temperature fluctuation. I have been known to have a cold pack on my neck and a heated one on my leg...at the same time. I like vests and long underwear and use a hair dryer running down my shirt when I get the shivers.

Glad
I found this post. I have this issue. Cold when everyone else is warm or ok. Can’t take ceiling fan on, car heater blowing on me, sun through windshield or when furnace kicks in during very cold outside weather. I can feel sick all over when this happens including a headache at back of neck. Hard to get warm when get cold.

I will see primary again soon with full blood picture. I do have BP issues and will bring this up. Take a diuretic so maybe electrolyte issue.
I have been diagnosed with Erythromelalgia which is also a mystery issue.
My husband ordered me heated booties and I can’t wait until they come. I use heated rice bags a lot.
Laughed when I saw someone like me may have a heated bag on stomach or lower back and ice bag on neck.
Keep posting things that work. Thank you all.

My condition is dysautonomia. A hard to diagnose condition. Not really curable although my doctor cured herself but she has strictly stayed on an anti- inflammatory diet which is the key. Compression socks are recommended. There are several nasty symptoms.

Yes I have this. Even long before covid. I have lupus Sjogrens. Fibro nueropathy. They/ drs think it’s from Sjogrens. Have u ever been tested for it. Just maybe a possibility. I have everything u listed. In the beginning I was passing out with blood pressure bottoming out. It took forever for them to figure it out. Can come with fog. Fatigue and yes the body dysregulation. Best to see a cardiologist who has some knowledge base of pots and check for any underlying auto immune diseases. Compression stockings help. My legs swell quite a bit.

Here’s a fun term to ask about: dysautonomia. The autonomic nervous system runs our internal systems without us normally needing to think about them. Has your internal thermostat gone a bit haywire? I hope not, but you are describing repeated episodes of chills where you can’t get warm. Lots of suggestions in the chat here- and certainly some conditions for your provider to think about and rule out as causing your symptoms. I’ve recently been reading about autonomic dysfunction in autoimmune disease- and there’s some good evidence of it causing symptoms in long COVID- so it might be worth asking about.