Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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Hey everyone

Sadmissy
Sadmissy

As I lay here in my bathtub soaking in Epsom salt drinking kava stress tea I think about how I don't really want to be on my phone I don't really want to go out I don't really want to do anything because when I start doing something The Blood starts rushing and then I feel pressure and throbbing and all of my ulcerations I'm reading some really good posts today and I'm sorry for not using any punctuation but it's because my hands are wet and I'm speaking into my phone. Anyway just want to say there's some really great support on here and I feel very blessed regardless of how crappy I feel regardless of how much I don't want to think about this thinking about it with others who understand and are saying almost the exact same thing I'm going through makes me feel less alone even though I think I choose to be alone.  On Average I bath twice a day and throw in a shower too. I might be one of the cleanest people I know.. but I sweat alot or my feet get freezing.. anyone have trouble regulating blood pressure?

JoshM
JoshM
Yep I bath just as much but during the summer I can add in another bath or shower too. No problems with Blood pressure for me as far as I know. During the summer I get like an Instant Heat stroke once I start sweating a lot which doesn't take much for that to happen. I get too hot even when I'm cooking on the grill or over the oven.....And I love making yummy food, mainly the eating it after part. I'm Not sure if the over heating/heat stroke I get is a blood pressure thing. Never been able to get to the doctor while I was still feeling the effects. I have asked about it numerous times and the response is that it is from all the surgeries I have had to remove sweat glands and such.
Mrsbrown
Mrsbrown
Yes i do it because of my hs i ask the doctor can i get off of it he said no i need it8u
Kc137
Kc137
The blood pressure/throbbing pain thing occurs whenever I get out of bed after sleeping or taking a nap. It's the absolute worst feeling. Especially if I have make it to the bathroom really quick(male), sometimes blood will rush out, and drip down my leg or onto the floor. Otherwise, if I'm able to take my time, I switch from laying down to the sitting position, sit for five minutes before I stand up. That helps with keeping the blood from flowing too fast.
Bmorefrank
Bmorefrank
My doctors think circulation is a factor in hs. Alot of people that have hs also have circulation problems so that's probably why feet get so cold. Mine do as well. I was in grand rounds about 6 months ago where about 30 docs come in and see me. A few of them asked about joint pain in chest area. I do get pain in that area sometimes which they also think it's related.
Sadmissy
Sadmissy
Hmm thanks guys for the comments..I'm trying to put this all together all the symptoms and I am trying to get more knowledge so I can help get things more stable!! Xoxo thanks guys!