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 have struggled with HS for about 20 years. I've been to numerous doctors with no success and have tried every remedy out there. I could go on and on. Basically, the same story that so many of you have struggled with. I registered here for the sole purpose of sharing this information because I have struggled in agony for most of my life.
Several years ago I bought the book "The Hidden Plague" by Tara Grant. This helped a lot. Although I didn't experience remission, the severity of the disease did improve. It seemed like I had fewer outbreaks overall but when they did occur they were much more severe. Around this same time, I took a vacation to Arizona and experienced a lot of healing while there for a week. I didn't think the change was related to food because I was eating the same diet as I was before I left. I thought it was probably stress or the environment. I could not control the environment once I got back home so I decided to start with stress.
This is when I started supplementing with 5-htp twice a day at 100mg. I know it sounds crazy, but this has been life-changing for me. With this supplementation and maintaining an autoimmune protocol/paleo diet, I have been able to reach remission of my disease. I never thought this would be possible. I have scars down the back of my leg from wounds that I thought would never heal. My theory is that there is a connection between the pathways of anxiety/depression and inflammation. For whatever reason, increasing my serotonin levels has sent my HS into remission. I tried supplementing with tryptophan, which is the precursor to serotonin, but I started to get a breakout again. So, I know that potentially my body does not convert it well. Here is a link to a study where serotonin has been used to subdue RA: http://www.life-enhancement.com/magazine/article/3534-5-htp-subdues-rheumatoid-arthritis
I do not believe that 5-htp is a miracle cure, but just part of the process. I know I need to avoid gluten, nightshades, and sugar as well. If I don't, I will start to get a small breakout. However, 5-htp has provided remission for the time being and I am so grateful. I wanted to share my experience hoping that it would help someone else who is struggling. Of course, every person is different so there are no guarantees, however, it's an affordable option worth trying. This has been the hardest journey of my life. My thoughts and prayers go out to every one of you who is fighting this horrible disease! My hope is that what has worked for me will work for you. God bless.
I've been through the EXACT same struggle with doctors. Most of them are clueless. It's ridiculous. The research is there but they refuse to acknowledge it. Even more, the personal experiences don't lie. People are being healed through diet and supplements and by regulating their immune system naturally. You will really have to go through the Elimination Diet to determine which foods your body can tolerate. Like I said, I don't believe it's JUST food. It's probably multiple factors. Food is a great place to start. Keep a journal of everything you eat and log how you feel each day as well as how many breakouts you have. After several weeks you should be able to identify a pattern. Mine is gluten and nightshades. Pizza is the worst. 3-4 days after I immediately get an outbreak. Low serotonin (5-htp) was the final piece of my puzzle. I know it seems overwhelming (i've had many emotional and mental breakdowns) but keep moving forward. I mainly stick to eggs and bacon for breakfast, salads and soups for lunch and meat/sweet potatoes/veggies for dinner. Probiotics are great because they help heal the gut and the body. As with all supplements, don't just go to walgreens or walmart and get them. Do you research and order something with quality reviews from Amazon. I also take glutamine and carnosine because they help to heal the gut and intestinal lining. Fish oil, mangesium and zinc are important for my health as well. There is another study which has shown that taking 90mg of zinc per day helped some people achieve total remission. I highly recommend selfhacked.com for info on supplements. Unfortunately, if doctors will not help us, we must research and figure it out ourselves through trial and error.
I'm very much the same as you guybrown, started with food and quitting smoking. Saw minor improvements but am convinced that because my stress and mental health wasn't being managed I was still getting the worst HS of my life at times, to the point where it could spread all the way to my ankles. I took back to smoking (I'm not a heavy smoker and never have been) and dealt with my mental health (as is an ongoing struggle for many with HS), Coupled with diet and skincare I am almost totally in remission. I don't eat a paleo diet, and I don't eat clean 24/7 but I think finding something that works for each person may be the key.
My current focus is mainly on maintaining and diminishing scars which is coming along with some success.
I would start out by throwing out all processed grains, ie, white grains.
So try not to have white bread, pasta, white rice. These are basically empty calories and fill you with a hidden sugar. Very bad for your overall health. There are wholegrain alternatives to all of these. Or you can get a vegetable spiralizer to replace spaghetti which is even better for you :)
I try to cut down on cheese, meat and potatoes. But that's my personal body type and it may not be conducive to another persons goals.
Try not to eat junk foods or sweets.
Make your own lunches. You'll save money.
Cut out as much sugar as possible. I personally ate too much sugar before so this was important for me.
Limit alcohol. Doesn't mean you can't go out for a drink just you'll be a light weight when you do and you'll get drunk faster :D
Eat heaps of veges. I really like to put cabbage in meals as it is low in calories and good for digestion.
You've noticed I said TRY right? I employ my own rules for everyday life and I honestly break them every now and then because I don't want to suffer through life just for the sake of a diet. And after a while of cutting out sugar it only takes a little chocolate to satisfy a craving these days and same goes with other foods.
You seem really motivated!! I really hope you find a way to go. It can take a little while and can be daunting but honestly stick with it!!
Start slow and keep a journal. There will be many days you feel crazy. You may have to deal with watching others eat things you can't or explaining that you are doing an elimination diet. It can be brutal! Don't give up. After years of going slow with my diet and supplements and keeping a journal of everything I have found remission.
I initially started with just cutting nightshades. Then I cut gluten and dairy. From there, I gradually cut out sugar and processed foods. I thought I was going to have a mental breakdown when I had to give up mexican and pizza! But, I feel so much better eating whole foods.
The two most important points I would stress to anyone is 1) Do NOT give up! Keep moving forward and analyzing your body's response. 2) Keep a journal! It will provide to be invaluable to looking back and seeing what is working and what is not.
I've had this condition for about 4 years and just got a diagnosis on Dec. 20th. I really don't know what to do, my doctor referred me to a dermatologist but I'm waiting to hear back. I'm to the point that it hurts to do anything besides lie completely still. I haven't even been able to work.
I'm really not sure what I'm looking for or hoping for. I joined just because of this thread and ....Thank you.