sue1234 Posted January 8, 2012 Report Share Posted January 8, 2012 I know--dumb question. But, it has got to have something to do with my POTS. A few months before POTS, in the dead of summer(95F), I had constant goosebumps on my arms, even though I did not feel cold at all. This is embarrassing, but at the same time, my nipples were "erect" all the time! I had to buy new bras that had extra padding to hide this, as it was embarrassing to be seen against my shirts.Now, when I'm cold, I don't get real goosebumps anymore. I can see a weak ripple all over my arm, but not near real goosebumps. I think it has something to do with acetylcholine. Of course, that's the one thing some of us think we might be low in due to the almost myasthenia gravis diagnosis. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted January 8, 2012 Report Share Posted January 8, 2012 It could be a med symptom too. I would get bad chills from midodrine... it would be the hottest part of the summer and there I would be bundled up because I was freezing. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 8, 2012 Author Report Share Posted January 8, 2012 Mine wasn't due to meds, as I was not taking any that would cause that. But you are right, midodrine can do that, so I guess my question should be addressed to those that don't take midodrine, so there's not that influence. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 9, 2012 Report Share Posted January 9, 2012 sue,Its interesting you ask this because I hadn't thought about it before but even when I get so cold I am dressed in scarves and hats and under many blankets, I don't have goosebumps. I used to get them quite easily. Hmmmm.... Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 9, 2012 Author Report Share Posted January 9, 2012 Any others?? Quote Link to comment Share on other sites More sharing options...
lissy Posted January 9, 2012 Report Share Posted January 9, 2012 I get them easy all seasons. I remember riding in a car in 100 degree temp with the hot air blowing in on me and I had goosebumps! I showed my husband and he was shocked and said thats weird... Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 9, 2012 Report Share Posted January 9, 2012 I get goosebumps a ton...it really hasnt changed for me. midodrine did increase them a bit, but they have always come and go for me. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 9, 2012 Report Share Posted January 9, 2012 I don't recall seeing the goosebumps for a while but I feel like ice water is running through my veins and the scalp still gets tingly like when I had goose bumps (probably med and/or hormonal related?). Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted January 10, 2012 Report Share Posted January 10, 2012 i get the 'uncontrollable' goosebumps.... all over.... even my head/hair all the way down to my feet and it can last a long while... i hate it.... i haven't had any of those attacks in about a week though.... but im finding they are common with me..... i absolutely hate them because they come out of nowhere, no trigger, no reason..... ugh..... the weirdest feeling on earth!!!tennille Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 10, 2012 Report Share Posted January 10, 2012 mmmmm.....come to think of it I never have goosebumps either....even when I am so cold I am shivering.....but its more of an internal cold.....like I cant regulate my core tempBren Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted January 10, 2012 Report Share Posted January 10, 2012 mmmmm.....come to think of it I never have goosebumps either....even when I am so cold I am shivering.....but its more of an internal cold.....like I cant regulate my core tempBrenbrethor!! i know within myself that my body cannot regulate temp AT ALL..... i hate this!!! No matter what fluctuation in the temp outside or inside, my body just can't seem to regulate anything or adjust to anything....... that's one of my biggest issues that i hate the most. Glad im not alone!!!! tennille Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 10, 2012 Report Share Posted January 10, 2012 yeah me too tennille!!! I would love to get the body temp thing under control.....I asked my auto doc what can be done and he just smiles and says its POTS ......not very helpfulPS Have the most awesome time at your TOOL concert!!.....I so miss going to concerts....that was my fave hobby before getting sick....last one I went to was U2 360....I miss it sooo much!!!Bren Quote Link to comment Share on other sites More sharing options...
micheller Posted January 10, 2012 Report Share Posted January 10, 2012 I get them all the time too, hot or cold. The reason why I hate shaving my legs in the winter, I get goosebumps and they hurt! Feels like little needles pricking me. I'm not on meds for pots so it's not from that. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted January 11, 2012 Report Share Posted January 11, 2012 I get them without the meds too but it was just worse when on I was on meds! My body can NOT regulate my body temp at all...I go from being hot and cold all of the time for no reason which is a pain because nothing seems to make it stay feeling like a normal body temp. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 11, 2012 Report Share Posted January 11, 2012 I'm in the too many goosebumps category! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 11, 2012 Author Report Share Posted January 11, 2012 Okay, I see more people get goosebumps for no reason than people(like me) that don't get them, even when they are cold. Maybe that does say something about my acetylcholine and what it's not doing in my body. I'll have to let my endo or neuro know.And, yep, no temp control here either. I am comfortable in regular clothes in a temp range from 72F - 76F, and that's it. Of course, I will take being cold any day over being hot! Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 11, 2012 Report Share Posted January 11, 2012 I get them without the meds too but it was just worse when on I was on meds! My body can NOT regulate my body temp at all...I go from being hot and cold all of the time for no reason which is a pain because nothing seems to make it stay feeling like a normal body temp.I always run low body temperature--sometimes they have to warm up fingers or body to get the temp to register up to a low normal. It makes it so hard to know how to dress if you go anywhere here in midwest with frigid cold temps in winter, or maybe heaters blow hot air too close to me and I feel as if I'm smothering, then comes the cool down cycle of the heaters that make me chill. I set the thermostat at 64 but sleep under down blanket and flannel blanket and with fan going (DH puts off lot of body heat, and when the heater--with register next to my side of bed runs, the smothering hot feeling will wake me out of sound sleep, kicking to get bedding off of me). Went to visit DS for few days over holidays and did not know what to wear (warmer down south but in single digits when I got home. It was really windy and cold wind the day after I got there and I had 2 coats--med and heavy duty. I figured that while I prefer cotton pjs, I took polyester to be safe in case the bedroom was too cool--but then DS and her hubby worried about me being too cold and cranked up the heat. I didn't sleep much on that visit. I packed for 2--to wear layers to peel off when heater on and throw back on when heater off and they ran around trying to kick it up if I covered up or kick it down when I'd peel layer off. I probably gave them a little dose of dizzy , but I did send them a nice gift card when I got home. ). Quote Link to comment Share on other sites More sharing options...
peregrine Posted January 15, 2012 Report Share Posted January 15, 2012 I recall seeing this topic and not commenting, due to not having anything to say... and then was walking to work two days ago, waaay too warm from sweating, and took my sweater off in the 30F weather. My arms were bright red and wind-chapped from the cold, but my hair was down and there were hardly any bumps at all - mostly just a couple of low-level ones. Certainly different than before! Quote Link to comment Share on other sites More sharing options...
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