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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awesomeusername 10/02/2011

Has anyone else found that jeans are an impossibility? I've tried wearing looser fitting ones, and I just get flareups in different areas. As of late, I've only been wearing leggings and can see a drastic change in the frequency of my flareups. I love having less boils to deal with, but I hate that I have only been wearing leggings the last couple weeks.

Any other clothing you guys know of that is anti-friction?

Also I mentioned in a post that I like using lever 2000 and Dr. Bronner's Tea Tree Castile Soap. Since I've been using them I've had less flareups as well.

When I do get a flareup though, or feel a boil coming on. I apply 20% salycylic acid to it with a qtip. With a couple applications, it will go down and away or (if it is an abscess) it will dry it out and decrease inflammation.

Calcium bentonite clay works well if you keep up with it. Now that I'm at school, I can't lather my thighs in it -_-

I'm hoping to get my hands on some tumeric and zinc soon. I can't waait.

deleted_user 10/02/2011

i seem to be the opposite of you :s I have no problem with jeans or 100% cotton trousers but things like leggins, joggers or other trousers that are fitted or tight really give me bad flare ups. I even had to get a docs note to get special 100% cotton trousers for work as the standard ones are polyester and caused me no end of problems!

deleted_user 10/03/2011

I also have problems with jeans. I have not given them up yet though. Sweats seem to be the best for me, and any kind of workout/jogging pants are the worst!!

Does anyone have any ideas on how to get stains out of your clothes/sheets from the drainage? I try to keep all sores covered while they are draining but I still have problems with them leaking. I have tried pre-treating with the detergent, stain removers and even peroixide and water. Any ideas?? Thank you

deleted_user 10/03/2011

@cricket37- I use only solid white color bedding and I soak my sheets in warm bleach water in the washer for at least an hour before I wash them. You don't need a ton of bleach and I think the warm water soak is really the trick. If there is a lot of blood I'll use a stain stick also before the bleach soak. It works well, but the bleach is hard on your sheets.

deleted_user 10/04/2011

I haven't worn jeans since 2004, I only wear sweat pants. Lose enough but not baggy. I never realized how incredibly uncomfortable jeans were until I stopped using them. Thats just me though.

deleted_user 10/04/2011

I forgot to mention that if I wear a pair of jeans or pants that I know are a little tight and may cause new sores I put on Chaffing cream from Monistat. It doesn't cure anything but it does help from new ones forming. Just rub small amount in any area where you normally gets sores. It is called Chafing Relief Powder Gel...
I hope this helps.

Colleenie 10/04/2011

Where do you get the 20% salycylic acid. Is it a brand of cream or what. Jeans tend to cause me problems most of the time. I try to find light weight sweats made of cotton. The last ones I got were from Costco quite a few years ago and they are wearing out. What I will get now is really a dilemma.

deleted_user 10/05/2011

@ Colleenie- You can get the 20% salicylic acid on Amazon. It's pretty reasonably priced. As far as light weight cotton pants, I usually get mine through King Size. I am a good size gal and am very tall. I wear a lot of men's clothes because I can't find women's women stuff that is long enough. They have these great cotton jersey pants that I wear a lot of the time. Not all their stuff is for tall people so check it out. In the winter time I get their open bottom sweat pants and those are good too. I think Woman Within has some cotton jersey pants also. I don't shop there much since 99% of their clothes are for women 5'6" and under. It's not worth the effort to ferret out their few tall items. It just makes me frustrated.

ShannonA 10/05/2011

I still have a couple of pairs of jeans that I still use from time to time. Usually if I have a parent/teacher meeting or something important to look nice for.
Other than that it is all cotton stretch pants for me. Or large cotton shorts, which is usually only at home since I can't shave.

I use Hibicleans and Neutrogena soap for sensitive skin for washing. That and Paul Mitchells Tea Tree Shampoo for my hair. My mother in law is a hair dresser, so I get that for free, but found out quick it is not a good idea to use it on my owies...lol

Where are you getting this clay from? Sound interesting or at least worth a shot to see if it helps any.
Hope you are feeling well.

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