[Healthgirl]

I used to love the cold
These days my body literally can't regulate itself in the cold.
My hands can't function properly, my breathing gets shallow, I shiver, have shortness of breath. It could happen from being in the freezer section of the grocery store for 10 minutes or being in temps of under 64 degrees. If I don't get out of the situation fast enough, my hands up to my elbows get numb. It's like my body can't circulate blood already, and when I get cold or even slightly cool, it shuts down.

What is up with that?
Happen to anyone else?

[mrsD]

This sounds related to your livedo issues.

I'd get tested for cryoglobulins, which are proteins made in the bone marrow. When exposed to low temps, they thicken and stop the circulation. You may be beginning to have this elevated.

http://www.hopkinsvasculitis.org/typ...oglobulinemia/

[en bloc]

There are several autonomic factors that can cause more sensitivity to cold. If you have lower BP, this decreases circulation, hence making you feel colder. Also, your temperature regulation itself is an autonomic function and often affected by dysautonomia. Your body temp may run low as a result. My normal body temp now is only around 97.2. Then, of course, there is the livedo that MrsD mentioned and the cryoglobulinemia. All of these factors combined will make you quite sensitive to the cold.

Also, there is the possibility of Raynaud's.

[zkrp01]

Originally Posted by Healthgirl

I used to love the cold
These days my body literally can't regulate itself in the cold.
My hands can't function properly, my breathing gets shallow, I shiver, have shortness of breath. It could happen from being in the freezer section of the grocery store for 10 minutes or being in temps of under 64 degrees. If I don't get out of the situation fast enough, my hands up to my elbows get numb. It's like my body can't circulate blood already, and when I get cold or even slightly cool, it shuts down.

What is up with that?
Happen to anyone else?

and the cold bothers me. It's like the cold penetrates further and deeper than it should. Mrs. D's post about cryogoblins sounds like an actual circulation situation I've never heard before. Motorcycle riders have battery operated heated gloves available if you have to be exposed. Good Luck, Ken in Texas.

[Healthgirl]

Originally Posted by mrsD

This sounds related to your livedo issues.

I'd get tested for cryoglobulins, which are proteins made in the bone marrow. When exposed to low temps, they thicken and stop the circulation. You may be beginning to have this elevated.

http://www.hopkinsvasculitis.org/typ...oglobulinemia/

If it's related to the livedo issues, it seems crazy that 3 of us with in a few weeks of each other started getting it and that it could be caused by an autoimmune antibody.
Unless we have some kind of viral or bacterial cause that could cause a vasculitis.
They assumed a year ago in the hospital that it was some sort of autoimmune vasculitis, but could find no test results to prove it. I was eventually sent to the neuromuscular dr. who found the SFN and autonomic stuff. I am probably due for some retakes of my blood work in the next few months.

[heb1212]

Originally Posted by Healthgirl

If it's related to the livedo issues, it seems crazy that 3 of us with in a few weeks of each other started getting it and that it could be caused by an autoimmune antibody.
Unless we have some kind of viral or bacterial cause that could cause a vasculitis.
They assumed a year ago in the hospital that it was some sort of autoimmune vasculitis, but could find no test results to prove it. I was eventually sent to the neuromuscular dr. who found the SFN and autonomic stuff. I am probably due for some retakes of my blood work in the next few months.

Healthgirl.... Cold sensitivity was one of the first issues when my nerve pain started. Going through the refrigerator section of a grocery store would make my face go numb. I couldn't attend my kids fall sports because it would trigger painful numbness through my whole body but especially my feet. All auto immune has been ruled out for me so we know it's not that.
But I wonder if you've been tested for parvo virus B19? It can cause levido reticularis and is what is felt triggered my various difficult pain syndromes. I've been diagnosed with central sensitization, which I probably do have, but I feel I also have true peripheral nerve involvement too. Plz consider asking your doctor for this. It can be a brutal experience especially in adult women... Crushing joint pain and swelling, especially of the hands knees and feet, prolonged fever, gastrointestinal issues, extreme fatigue, peripheral nerve pain (more uncommon) and levido. A viral illness could explain why numerous family members have symptoms. Good luck.