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,...
I haven't been on this site in a while but I wanted to come on and tell you about a few things I've been doing that really seem to work.
Supplements -
1. Tumeric supplements orally 3 times a day. Not sure of the exact amounts on that one, I use Oregon's Wild Harvest from Whole foods. Says in a day the serving includes basically 1350 MG of tumeric and 9 MG black pepper.
2. Cayenne pepper supplements 2 times a day, morning and evening with food. Total intake for the day is 600 MG. strength on that one is 100,000 heat units. I use Solaray extra hot Cool Cayenne. It doesn't seem to upset my stomach.
3. Zinc supplement one time a day. Strength on that is 50 MG.
4. Monocyclene antibiotic. I started taking Doxycycline but then my doctor changed it due to flare ups. With all the supplements I am scheduled to meet with him to discuss stopping the antibiotics all together as I haven't had a flare up in forever.
5. Candida support supplement. I use a brand called Now Candida Support. 2 pills a day, breakfast and dinner. Ingredients listed include garlic, olive leaf, cats claw root, and wormwood. I take this because I seem to have a real problem with yeast infections, either internally or on the surface of my skin. Whenever I have a yeast infection it seems to cause a huge breakout. Idk for sure if they're linked but they seem to be.
6. Probiotic - one capsule in the morning with breakfast. Again this is more to do with yeast control than HS directly, but they seem to be linked. I take Ultimate Flora Women's Probiotic from Whole Foods. It's easier because that brand does not require refrigeration like some of them do.
Beverages
I've given up diet (and regular) sodas completely. It was hard but it seemed to make a big difference. Switched over to mineral water with a dash of lemon juice and stevia for sweetness. I mix my own, but you can buy it already mixed at Costco I believe.
I started drinking 6-8 cups of green tea a day for its anti-inflammatory properties. I know some people have flare ups if they have any caffeine but this doesn't seem to bother me with the green tea. On a side note since starting to drink it my skin in general has felt smoother and more firm.
I stopped adding milk to my tea or drinking it in general. I haven't cut out dairy completely, I love cheese. But milk itself seemed to cause me issues. If I get flare ups in the future I may cut the dairy out completely but I'm ok for now.
Water water water. No matter how you get your liquid I've found if I drink a TON a day it helps tremendously. So I've got the 6-8 12 OZ cups of green tea a day, plus usually another 48 oz of water or mineral water. That's on a regular day. If I am focusing on it I up my water to 72 oz a day. Yes that's a lot of bathroom trips at first, but your body adapts and then even drinking all of that I go to the restroom like once every 2 hours during the day. I would suggest stopping drinking around 7 PM if you want to go to bed around 10-11.
Food -
I'm struggling with the actual changing my diet thing. In general during the week I don't eat a lot of bread or processed sugar. Weekends are a bit different, but I'm slowly dialing my simple carbohydrates down. For me that seems to be enough.
I eat extra virgin olive oil every day. I mix my own salad dressing (just cause I like it) and I eat salad every day for lunch. I also cook with it every time I need oil.
Soap -
I use hybecleanse, once a day. Love it. It's over the counter and one bottle lasts forever.
Deodorant -
I switched to Dove for Sensitive skin and it's amazing. No flare ups at all under my arms for years (even with no antibiotics or anything else. Just switching). I'm in Texas so in the summer I may have to reapply in the afternoon but that's ok.
Topical solutions -
I've been applying clyndimyacjn (sp? I don't have it in front of me) topically after a shower. Seems to work pretty well but I'd like to stop using it just because of the expense of the prescription (just switched jobs so I'm in the waiting period for insurance to kick in).
I've been reading about tea tree oil applied topically so I am going to try that. Thoughts from anyone who has used it?
Other stuff -
Shaving - yeah no. Not in my pubic area anyways. I keep it trimmed with scissors but that's about it. I do however shave my armpits. I use a sensitive skin shaving cream to avoid knicks, I use the razor only a few times so it doesn't get dull. Most important thing is I shave WITH the hair, not against it. It doesn't give me as close a shave but it also doesn't irritate my skin.
Laundry detergent - has to be one of the ones with no added colors or scents. Same thing for fabric softener or dryer sheets.
Actions - ok so this is gonna be TMI probably but when I get out of the shower I PAT dry the areas that are problems. Don't rub. Then I go lay down on my bed under my ceiling fan and read the news on my iPhone while I air dry with all my skin exposed. In the evening if I am damp in my groin area after a day in the heat I do the same thing again, air dry completely. I avoid using a hair dryer for this if possible because its likely to irritate my skin if it's too hot. I don't like using powder etc to keep it dry because I frankly don't want to introduce anything else to that area if I can help it.
Blood flow - I have found one of the most important things I can do when I start to get a flare up is increase the blood flow to the area. So that means sometimes heating pads. Sometimes just very gently running my fingers over the area while i watch TV, just sortof massaging the skin lightly. Sometimes cardio exercise to increase circulation in general. Sometimes...well I used to get flare ups err...inside... So extrapolate from there how to increase blood flow to that specific area.
Clothing - COTTON UNDERWEAR!!! And if you can get some where even the elastic around the waist and the legs is covered over with cotton cloth that's the best. I wear colors now but to start I switched to all white, mainly cause it was easy to bleach, but also just because it felt cleaner. Idk why.
SLEEP - I've found I'm the type of person who needs 9-10 hours on average to feel really rested. Some people need less, some more. Figure out what your number is and then get it. Your body needs rest to heal. If you are like I was, 4-5 hours a night during the week and then sleeping a ton on the weekend to try to make up for it doesn't work. It has to be consistent.
So this is what I do, and it seems to be working. Does anyone have any suggestions? Tweaks? Comments or questions?
Sarah
Supplements -
1. Tumeric supplements orally 3 times a day. Not sure of the exact amounts on that one, I use Oregon's Wild Harvest from Whole foods. Says in a day the serving includes basically 1350 MG of tumeric and 9 MG black pepper.
2. Cayenne pepper supplements 2 times a day, morning and evening with food. Total intake for the day is 600 MG. strength on that one is 100,000 heat units. I use Solaray extra hot Cool Cayenne. It doesn't seem to upset my stomach.
3. Zinc supplement one time a day. Strength on that is 50 MG.
4. Monocyclene antibiotic. I started taking Doxycycline but then my doctor changed it due to flare ups. With all the supplements I am scheduled to meet with him to discuss stopping the antibiotics all together as I haven't had a flare up in forever.
5. Candida support supplement. I use a brand called Now Candida Support. 2 pills a day, breakfast and dinner. Ingredients listed include garlic, olive leaf, cats claw root, and wormwood. I take this because I seem to have a real problem with yeast infections, either internally or on the surface of my skin. Whenever I have a yeast infection it seems to cause a huge breakout. Idk for sure if they're linked but they seem to be.
6. Probiotic - one capsule in the morning with breakfast. Again this is more to do with yeast control than HS directly, but they seem to be linked. I take Ultimate Flora Women's Probiotic from Whole Foods. It's easier because that brand does not require refrigeration like some of them do.
Beverages
I've given up diet (and regular) sodas completely. It was hard but it seemed to make a big difference. Switched over to mineral water with a dash of lemon juice and stevia for sweetness. I mix my own, but you can buy it already mixed at Costco I believe.
I started drinking 6-8 cups of green tea a day for its anti-inflammatory properties. I know some people have flare ups if they have any caffeine but this doesn't seem to bother me with the green tea. On a side note since starting to drink it my skin in general has felt smoother and more firm.
I stopped adding milk to my tea or drinking it in general. I haven't cut out dairy completely, I love cheese. But milk itself seemed to cause me issues. If I get flare ups in the future I may cut the dairy out completely but I'm ok for now.
Water water water. No matter how you get your liquid I've found if I drink a TON a day it helps tremendously. So I've got the 6-8 12 OZ cups of green tea a day, plus usually another 48 oz of water or mineral water. That's on a regular day. If I am focusing on it I up my water to 72 oz a day. Yes that's a lot of bathroom trips at first, but your body adapts and then even drinking all of that I go to the restroom like once every 2 hours during the day. I would suggest stopping drinking around 7 PM if you want to go to bed around 10-11.
Food -
I'm struggling with the actual changing my diet thing. In general during the week I don't eat a lot of bread or processed sugar. Weekends are a bit different, but I'm slowly dialing my simple carbohydrates down. For me that seems to be enough.
I eat extra virgin olive oil every day. I mix my own salad dressing (just cause I like it) and I eat salad every day for lunch. I also cook with it every time I need oil.
Soap -
I use hybecleanse, once a day. Love it. It's over the counter and one bottle lasts forever.
Deodorant -
I switched to Dove for Sensitive skin and it's amazing. No flare ups at all under my arms for years (even with no antibiotics or anything else. Just switching). I'm in Texas so in the summer I may have to reapply in the afternoon but that's ok.
Topical solutions -
I've been applying clyndimyacjn (sp? I don't have it in front of me) topically after a shower. Seems to work pretty well but I'd like to stop using it just because of the expense of the prescription (just switched jobs so I'm in the waiting period for insurance to kick in).
I've been reading about tea tree oil applied topically so I am going to try that. Thoughts from anyone who has used it?
Other stuff -
Shaving - yeah no. Not in my pubic area anyways. I keep it trimmed with scissors but that's about it. I do however shave my armpits. I use a sensitive skin shaving cream to avoid knicks, I use the razor only a few times so it doesn't get dull. Most important thing is I shave WITH the hair, not against it. It doesn't give me as close a shave but it also doesn't irritate my skin.
Laundry detergent - has to be one of the ones with no added colors or scents. Same thing for fabric softener or dryer sheets.
Actions - ok so this is gonna be TMI probably but when I get out of the shower I PAT dry the areas that are problems. Don't rub. Then I go lay down on my bed under my ceiling fan and read the news on my iPhone while I air dry with all my skin exposed. In the evening if I am damp in my groin area after a day in the heat I do the same thing again, air dry completely. I avoid using a hair dryer for this if possible because its likely to irritate my skin if it's too hot. I don't like using powder etc to keep it dry because I frankly don't want to introduce anything else to that area if I can help it.
Blood flow - I have found one of the most important things I can do when I start to get a flare up is increase the blood flow to the area. So that means sometimes heating pads. Sometimes just very gently running my fingers over the area while i watch TV, just sortof massaging the skin lightly. Sometimes cardio exercise to increase circulation in general. Sometimes...well I used to get flare ups err...inside... So extrapolate from there how to increase blood flow to that specific area.
Clothing - COTTON UNDERWEAR!!! And if you can get some where even the elastic around the waist and the legs is covered over with cotton cloth that's the best. I wear colors now but to start I switched to all white, mainly cause it was easy to bleach, but also just because it felt cleaner. Idk why.
SLEEP - I've found I'm the type of person who needs 9-10 hours on average to feel really rested. Some people need less, some more. Figure out what your number is and then get it. Your body needs rest to heal. If you are like I was, 4-5 hours a night during the week and then sleeping a ton on the weekend to try to make up for it doesn't work. It has to be consistent.
So this is what I do, and it seems to be working. Does anyone have any suggestions? Tweaks? Comments or questions?
Sarah
sarahbrave
Also!!! Don't pick at stuff!!! Don't squeeze, don't scratch. If there's one of those black plug things in your pore take a warm wash cloth and some good soap and gently try to coax it out in the bath. Don't squeeze it out with your fingernails.
deleted_user
Great Post Sarah!
deleted_user
Thanks so much for this post! I am excited to try your methods!
pistoff
t.y. for the info. :)
Leonessa
If you notice problems in the arm pit area get rid of the deodorant. It took me about a month or two to stop being stinky but you eventually will be able to go with out it. I do use powder but only the cornstarch kind and on clean dry area. I have used tea tree oil in the dr bronners soap and also a few drops in my normal lotion. I would take a really good tea tree oil and add about 8-10 drops into a new bottle of my favorite lotion. The smell is a bit hard to get used to but I felt like it helped me during the really bad times. I only use the tea tree oil now when I have a flare starting and it keeps it at bay. I have also used bactine spray under my arms after showering. I felt this helped with some pain and odor. I totally agree about the not squeezing/picking!!! Great post thanks for sharing.
Gebbo
I just found out that coconut oil works really well for deoderant too. By the end of the day I'm still not stinky except a little under 1 arm that tends to drain more throughout the day. I used it on my rear and groin area too and it definitely helps me go longer through the day without any bad HS smells. Just make sure it's the organic/virgin kind.
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