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've been living with HS for over 10 years and finally diagnosed by a dermatologist 2 years go.. I was in stage 2 and know what most of you are going through so I wanted to share my experiences with this horrible disease.
I'm 32 years old, used to weigh 235 pounds, around 75 pounds overweight. I decided I had enough of this disease and started to try all kinds of medication/ remedies..from silver to turmeric. Nothing worked! I must have spent over 5k in the last 4 years. Around last year February I decided to lose weight and live a healthier life. After watching "Sick, Fat and Nearly Dead" I decided to start juicing, for 3 weeks I drank vegetable/fruit juicy for breakfast, lunch and dinner. I've lost about 15 pounds and that's when I realized my flare ups completely stopped and my skin started to become clearer.
Once I got off the juice diet, I started eating healthier foods. Lots of vegetables, fruits and meat. In the span of 1 year I did 3 rounds of juicing 3 week at a time. I felt great, had tons of energy, but I realized juicing 3 times a day wasn't sustainable. Can't drink juice for the rest of my life.
I purchased a work out program called p90x and started working my butt off. All while eating clean, no fattening foods, processed food and carbohydrates. I'm currently in the beginning of my 3rd round of p90x and I'm at 172 pounds.
Here's a breakdown of what you should do if you've had enough of this disease.
-Try juicing for 2-3 weeks for breakfast lunch and dinner. I know this is extremely difficult but if you get possible results from this you'll know it's a certain type of food you're eating that's causing the breakouts. Plus there are so many post regarding how the paleo/gluten diet helpd with HS, you can put this to the test.
-Use a combination of hibeclens and dr bronners Tea tree body wash every time you take a shower on areas you're prone to get flare ups. I started using this while juicing, not sure if it helps but rather use this than regular soap.
-Eat healthy foods. Stay away from all processed foods and carbohydrates. I try to avoid carbs due to wanting to lose more weight, but I noticed I feel like crap after eating anything with carbs including bread, pasta and rice. Feel tired throughout the day and I have a hard time digesting it.
-Get enough sleep at least 7 hours a day. I usually sleep around 10:00pm and wake up 5:30am every morning except on the weekends. I know every individual has different sleep requirements but not getting enough sleep will cause havoc on your body.
- Shower twice a day. Once in the morning and another before you go to bed.
This is a lifestyle change, if you think this disease will go away with a pill or cream you're living a dream. HS is not life threaten enough to get much attention from the medical community, unlike aids and cancer, however I know this disease is extremely painful and embarrassing for people that have it. I don't claim this process will completely cure HS. I still get very small red bumps (start of a boil) but after a couple days it completely goes away, it never grows. It happened about 6-7 times, but I can live with this cause there's no pain or scarring. I usually apply acne cream and in 2-3 days it's gone.
One a side note: those people that said they tried paleo diet and did not see any results, please give juice diet a try. This will eliminate everything except fruits and vegetables and from there you can introduce different types of foods slowly.
if anyone has questions or want to try it, please let me know.
I'm 32 years old, used to weigh 235 pounds, around 75 pounds overweight. I decided I had enough of this disease and started to try all kinds of medication/ remedies..from silver to turmeric. Nothing worked! I must have spent over 5k in the last 4 years. Around last year February I decided to lose weight and live a healthier life. After watching "Sick, Fat and Nearly Dead" I decided to start juicing, for 3 weeks I drank vegetable/fruit juicy for breakfast, lunch and dinner. I've lost about 15 pounds and that's when I realized my flare ups completely stopped and my skin started to become clearer.
Once I got off the juice diet, I started eating healthier foods. Lots of vegetables, fruits and meat. In the span of 1 year I did 3 rounds of juicing 3 week at a time. I felt great, had tons of energy, but I realized juicing 3 times a day wasn't sustainable. Can't drink juice for the rest of my life.
I purchased a work out program called p90x and started working my butt off. All while eating clean, no fattening foods, processed food and carbohydrates. I'm currently in the beginning of my 3rd round of p90x and I'm at 172 pounds.
Here's a breakdown of what you should do if you've had enough of this disease.
-Try juicing for 2-3 weeks for breakfast lunch and dinner. I know this is extremely difficult but if you get possible results from this you'll know it's a certain type of food you're eating that's causing the breakouts. Plus there are so many post regarding how the paleo/gluten diet helpd with HS, you can put this to the test.
-Use a combination of hibeclens and dr bronners Tea tree body wash every time you take a shower on areas you're prone to get flare ups. I started using this while juicing, not sure if it helps but rather use this than regular soap.
-Eat healthy foods. Stay away from all processed foods and carbohydrates. I try to avoid carbs due to wanting to lose more weight, but I noticed I feel like crap after eating anything with carbs including bread, pasta and rice. Feel tired throughout the day and I have a hard time digesting it.
-Get enough sleep at least 7 hours a day. I usually sleep around 10:00pm and wake up 5:30am every morning except on the weekends. I know every individual has different sleep requirements but not getting enough sleep will cause havoc on your body.
- Shower twice a day. Once in the morning and another before you go to bed.
This is a lifestyle change, if you think this disease will go away with a pill or cream you're living a dream. HS is not life threaten enough to get much attention from the medical community, unlike aids and cancer, however I know this disease is extremely painful and embarrassing for people that have it. I don't claim this process will completely cure HS. I still get very small red bumps (start of a boil) but after a couple days it completely goes away, it never grows. It happened about 6-7 times, but I can live with this cause there's no pain or scarring. I usually apply acne cream and in 2-3 days it's gone.
One a side note: those people that said they tried paleo diet and did not see any results, please give juice diet a try. This will eliminate everything except fruits and vegetables and from there you can introduce different types of foods slowly.
if anyone has questions or want to try it, please let me know.
I have to agree with you. I've had HS for about 40 years. I started when I was 14 years old and I had severe breakouts right away. It started in the groin are, went to the thighs, under the arms, under both breasts, on my stomach on my rear. I would have done anything to get rid of them.
I had many surgeries and have many scars. I did have the glands removed from my under arms and I haven't had another cyst come back in that area again.
Like you Ronid, I got very overweight and finally decided to try to lose my weight. I had gone up to 289 lbs. This disease was very debilitating and depressing for me because of the scarring thst came with it and the pain. I joined weight watchers and a gym and lost weight and noticed the cysts came less and less. I have also gone through the change of life, which I think also had an affect on the cysts.
I lost 130 lbs and kept it off now for 12 yrs, but I still follow low fat, high fiber, low carb diet. I only use soaps without dyes or perfumes to wash my clothes. I use hypoallergenic soaps to wash body with and I haven't had a bad breakout in about 10 yrs now. I still get them from time to time, but they are manageable.
I do believe that the diet and the change of life both had something to do with it. It's only my opinion as well, but I know that as you said, the drs. are not doing a lot of research on this disease as they feel it's a rare disease so they don't have the funds to spend on it.
I hope this helps someone else. I had nothing to by when I got them. Everything was trial and error. Even the doctors weren't sure if something would work or not.
Thank you for confirming my suspicion.. I knew it couldn't have been a fluke.. I've read that a lot of people were having success with losing weight and restricting certain foods.
I'm just sad that a lot of people on this forum are losing hope.. and they're not willing to make a lifestyle change to bring this horrible disease to a manageable state. Even my dermatologist, who looked at it briefly and knew about HS, said there was nothing he can do and sent me on my way after prescribing me with an antibiotics which obviously didn't work.
Like you my biggest problem right now are the scars.. I'm trying different things to get rid of them.. some have been there longer than 8-9 years and it's still dark and very noticeable. I've tried at least 10 different types of creams and nothing worked. I'm currently trying prescription hydroquinone, seems to make my skin peel and it's becoming a bit lighter but it hasn't gotten rid of it completely.
After losing all that weight I have some lose skin on the areas that have scars..Worse comes to worse I'll just have my lose skin/scars removed and problem solved..