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 did! From February 2013 till the summer of 2014 I eliminated potatoes(everything made from, or containing) tomatoes, aubergines, etcetera. Anything nightshade was on my list of foods to avoid. But nothing. I tried gluten too, and...welp. Personally, my triggers are fatty / greasy foods, and dairy - which I can't stand anyway - foods which I avoid. I exercise and cover up any possible HS inflammation with duct tape to avoid strenuous activity, which might exacerbate my condition, and I avoid touching it. Of course, I only avoid physically demanding activities when I'm suffering with a really(or what could potentially become) a very nasty boil(s). This method works for me. I eat healthy and train hard with weights to keep muscles strong and body fat low.
* the duct tape is a rather - I know- extreme measure I took years ago, but after about three months I began to reap positive results. Somehow keeping this horrid growth covered(for me!) has the effect of warm compresses, I.e., they burst much sooner than they would otherwise. A cyst that might take two weeks could burst in two or three days. I also took Turmeric, which helped, and Granny Smith or red delicious apples for quercetin, which helped. Bananas, onions, broccoli and celery.
If you have withstood the excruciatingly painful cysts and boils of HS, you'd survive a little tape. Although you're right. Yes, it does hurt, burn, and sting. The skin in my armpits is quite dry. Sometimes it cracks and bleeds. But I ignore it. Dealing with a malediction like HS since about 2000 has, I believe, increased my threshold for pain. I don't recall how I came across this method(circa 2008), but it worked! I wouldn't recommend duct tape though, no. But what I would ask you to try - provided that you have not already - is to keep the HS site covered and cover it as soon as you begin to see that an inflammation is occurring. Case in point, when I feel a strange pain on my armpit and the area looks a tad irritated and sometimes red and itchy as well, I run to the bathroom and I cover the part of my body that I suspect is becoming inflamed with HS. If it hadn't been for the tape ive been using, I'd be deformed by now. Of that I'm certain.
Again, it doesn't have to be scotch tape, duct tape, or yes, packaging tape. You could use gauze or paper tape, or anything else that you feel might better suit your sensitive skin. The importance lies in keeping the area covered. I only use scotch or duct tape because I can sometimes perspire a lot and the tape seems tough enough to stay on. Also, I noticed that rubbing it, touching it, etc., makes it more swollen and as a consequence, the cyst takes longer to go down or burst - tape or no tape. The heat / humidity are also silent enemies.
I hope my message helps. Everyone is different. I've been coming and going from this forum since 2011, and I've encountered people who claim they cannot eat potatoes, gluten, sugar, fat, sea food, and various other food groups. I've also seen people who will assure us that foods don't seem to help or harm them in any noticeable way. Food, though, I think is important. At least for me. I can only share my personal experiences combating this malady as a young man, and hope that it may help someone else. Thanks.
I'd prefer not to bleed from tape ripping off my skin lol. I might as well
wax myself while doing so. Yes, I can bare the pain of HS, but I'd rather not. My HS goes to stage 3 quickly. I've had many, dealing with HS since I was younger. And it was worse around 2010. So about 6 years now. My skin is very sensitive to tape. You are right keeping HS covered while it is open prevents it from getting worse. Everyone is different. Different things work for different people. I thought I'd throw it out there it might help someone. Armpit area is a difficult area to keep clean and keep covered. Food didn't help me. Sweating and hormones are my enemies!
And something that really helped me as well is consistently taking a prebiotic probiotic digestive enzyme. It was a total life saver!
I'm just not entirely certain how badly I'd have reacted to tomatoes if I hadn't been already undergoing four months of HS exacerbation due to putting on a hydrocortisone cream the doctor gave me instead of an antibiotic. I only put it on once and it's been twice as bad ever since, and so is the fatigue. I've tended toward sleeping 12-18 hours a day ever since when my usual is 8.
I am still crossing my fingers though that these food reactions may be because of antibodies that are intended to target various bacterial proteins instead and that if someone managed to do a competent job really and truly getting the infection out of there that the food reactions will have served their purpose and cease and desist. Otherwise it may continue and the food reactions may sit there like a ticking time bomb just waiting until next time something on a food label goes unnoticed so it can have another major flare-up out of nowhere.
I guess that is still something of a mystery though exactly what is going on with HS and antibiotics. Sometimes the results we get may be dramatic improvement, but there may also be a tendency toward a lack of finality in the results, as if somehow maybe they're not doing the job that they should 100%. The word "relapse" seems to be rather prevalent in literature on antibiotic treatment of HS, but I'm not sure we've ever had enough information to really understand if the antibiotic failures could be because the researchers may not really understand what they're up against in terms of different types of infection.
You know, if you HS is at stage 3 you may be up to at least 3 different infections in there, and your doctor could give an antibiotic that kills 2/3 of the different infections present and think they'd failed 100% to get rid of ONE infection because they don't realize there's 3. That may have actually happened to my doctor. There are other easy mistakes that could get in the way like mixing antibiotics that may compete with each other, and so on. So who knows?
As far as I know though you can be symptom free and still have HS and still be prone to symptoms. Some research spotted amazingly consistent genetic differences in HS patients. The most sensible way to interpret what the difference means might be that we're lacking in what may be some ordinary immune system weapon against microbes that we may not clear certain infections as easily as others, and may even want to be a little extra careful about germs. If nothing else, germs might be a worry worth a few extra precautions like taking a sanitizing wipe to the toilet seat before sitting down and so on, if we already have open lesions.