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,...
Hello everyone I'm not new to having HS but I didn't know there was a support group for it. My name is Sherita and I have HS. I have had it for years and now it's really taking a toll on my life. The pain I'm dealing with is sometimes unbearable and I cant do anything but cry. I had a very bad break down tonight because I'm just tired of dealing with it. I have went to two different doctors and no one really want to help me. I have tired every over the counter pain medicine I can buy. I need some advice on how are you all dealing with it.
To Sdcoc2989 - when you get those areas that are so painful - have ever tried using the lidocaine? You can buy it in the tubes over the counter now. I use it for my neck - I lost 2 cervical discs & I have a steel post there- so i have bad arthritis and the lidocaine does help relieve it. I don't know if it would help - but it might. Then maybe try ice - that is what I used when i had my knee replaced was ice - and it helped a lot. I am sorry it is so painful for you.
Mygel2Jersey
Mygel2Jersey 05/21/2017
See my post from a few days ago re how I manage my HS.
Michele (Mygel2Jersey) x
hsmom
hsmom 05/24/2017
Hello Sierra, my son also suffers from HS and cysts on his inner thighs. I am an aesthetician and work along side his dermatologist to help his HS condition, which affects 40% of the skin on his body. very severe.
First- red light therapy works to relieve inflammation ( done every second day), also if you can find a IR (infrared) heating pad they do the same and work very differently than regular heating pads. IR emits negative ions which are very healing for the body, the heat penetrates deep and pain relief for up to 6 hours. you can find good options on eBay and amazon. also seat heaters in cars have been using this technology for decades, so in a pinch turn on your seat heat !!
Second work on hair removal, with my son, the hair causes a depression on the surface of the skin which can trap and not release sweat properly. A cyst forms, then the skin decides to push out the cyst, now we have a hole and can risk infection. no hair way less risk of this happening.
we use IPL (intense pulsed light) because the dark wire like hairs he got after puberty are the ones causing the problem. there are at home versions of these machines that I recommend to my clients, because these treatments can be pricey even with insurance plans. The Silk'n flash n go is a great option, good price and great results if treated once every 2 weeks till there are no more active hairs. Then there is down time until more hairs become active and can be treated. After we have completely treated an area, no more HS cysts and break outs! example armpits, inner thigh, neck, side burns.
I also suggest a personal trimmer, to keep hair short but above the skin surface. this greatly lessens the problems associated with hair getting stuck under the skin and risking a HS cyst forming. only until all the hair is gone!
third- we are trying cannabis topical creams/oils to see what we find works. So far indica based topicals work best for pain, inflammation and the itchy skin crawling feeling goes away. With topicals you do not have to worry about getting high, there is no psychoactive effect.
fourth- if there is a acne component, like on the face, micro silver lotions work well
( micro not nano big difference).
none are quick fix,but with dedication these things can help!
Amber
Wisdumb
Wisdumb 06/06/2017
I find that for immediate relief n a warm wet compress helps sooth the pain and will bring it to a head so it can drain. Works wonders!!
cindy1
cindy1 06/06/2017
I think you need to find a new Doctor right away! Anything that is growing in size and causes you pain needs to be addressed right away, not ignored. It could be Staph and you would need antibiotics or possibly to have it lanced. Seek out a new Dermatologist and get it treated.