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Coping with heat and summer

Started by DryGuy, May 16, 2014, 09:38:30 AM

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DryGuy

I've noticed that I'm not really sweating much, a little from my head but that seems to be about it.  I'm relatively young (33) and otherwise very active.  I've always loved the summer and going to the beach, hiking, backpacking, biking and just being outdoors.  This lack of sweating has me a bit concerned since I'll be moving to VA in a couple months and it'll be even hotter there than it is here in NY.  I don't want to be confined to my home other than work and going from one air conditioned place to another.  Does anyone have any suggestions on working thru this?

By the way I'm seeing a neurologist tomorrow regarding my hypohidrosis and was told I should see if there is a neurological cause to all of my symptoms.

Thanks in advance.

Velcro

I very rarely sweat.  Never have.  Unfortunately, you are going to have to play trial and error.  The heat and sun bothers some, but not others.  I never had an issue until being diagnosed autoimmune.  It's really weird though for me.  It's not the heat, it's direct sun.  I can stay out in 100 degrees as long as I'm in the shade, or water, or there is a breeze.  I can't tolerate direct sunlight with none of the above more than 30 minutes before I start having a rough time.  I can stay out at the beach all day long as long as I get in the water off and on.

It's almost like if my skin heats up, then I struggle.  Sounds weird, but true.  So you will have to test it for yourself.  Some have no issues, some have bad issues and some like me, have certain issues.

It's really not that bad for me.  I have learned to duck into shade if we are outdoors every 30ish minutes or into a pool (ocean).  Not always convenient but doable.

anita

Hopefully your neurologist will consider a QSART to see if it is an autonomic dysfunction.

http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/evaluation/autonomic/qsart.shtml

You'll have to take extra steps to make sure you don't get heat exhaustion, etc.  Extra fluids, cooling towels (available at sporting shops), etc.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

slccom

There are cooling vests available to wear, too. You might want to check into them. People with MS often use them. They aren't cheap, but they will let you continue your active lifestyle. 

Sharon

Pinkfish

I lived in NoVA before moving to NJ, and I didn't notice much difference. I rarely sweat either and I'm very active outdoors, it just haven't really been an issue for me. I've always looked at the minimal sweating as one of the positives with Sjogren's!

Good luck in Virginia, you're going to love it down there!

litliwlowa

I get by with extra water, and have considering buying one of those mini personal fans that operate on batteries as a workaround. I haven't sweated in years, although since being on Evoxac and Plaquenil over a year now, I notice I am starting to sweat again.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

SjoGirl

If you search on heat intolerance on the forum you'll find lots of good info about how to deal with this. Unfortunately, there is no medical treatment or cure.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.