Is there a way of handling HS without going to the doctors?

Thanks alot, I'm going to start working treatment as soon as possible. 

That is a fantastic reply.  x

lol, thanks. I was actually kind of upset when I wrote that, and I tend to get wordy when I'm upset. Anytime someone, especially family, assumes you're dirty because of HS, it really ticks me off. People with HS are probably the cleanest people I know. Having to be constantly on top of your breakouts to prevent infection tends to turn us into neat freaks when it comes to our bodies.

Hi atticus, I hope you're still checking this forum...I read your post and it was one of the best I've seen on this condition. Thank you so much for taking the time to post about the process you went through to put your HS in remission! After months of monitoring, I'm fairly certain I have HS. Like you suggested, I'm trying to eliminate questionable food in order to ease the condition.

Since you found your food trigger, I was just wondering, how soon after eating nightshades would you see your HS flare up? I'm monitoring my food intake but I'm not sure if I should be looking at what was eaten recently or 8 hours prior, etc. So if I get a flare-up in the afternoon, I'm trying to get an idea if I should look for something that was eaten for breakfast, the previous night, or 24 hours before. I know everyone is different but I was just hoping on some insight on how you pinpointed yours...after consuming a trigger food, about how long afterward a flare-up would kick in and stuff like that. I'm eliminating individual items in my diet but a flare-up will still kick in sometimes, so this information would help in choosing what I should try to remove next.

Thanks again!

 

Hmmm...it's really hard to answer that just because, like you said, everybody reacts differently. Personally, I tend to break out between 12-14 hours after I consume potatoes or tomatoes,but it depends on how much I eat, and I think how it's cooked affects the timing as well. I ate a piece of raw tomato, on accident, had no idea it was in my salad until after I ate it, and I broke out before I'd even gone to bed that night, about 6 hours later. And peppers are another matter entirely. I think it just depends on the type of pepper. Sometimes it'll be a whole day or two later, other times it'll be within a few hours. So, what I'm trying to say, is there's no way to know for sure without a lot of trial and error.

It really helps if you don't go bass ackwards and eliminate foods one-by-one. I tried that and said forget it, and went ahead and did a complete elimination diet. It's easier to catch the culprits by reintroducing things one at a time. I can understand if you don't want to do that, because it's annoying as crap, but just be aware it's going to take a long time to figure out what triggers what.

After I figured out what my triggers were, I went back to my food diary and I was able to pinpoint a rough guestimate about how much time it would take for me to breakout after consuming a nightshade. And I still keep a food diary, just because nightshades are in so many processed foods, and I've had more data to work with as a result.

I've also done alot of trial and error with the format of my diary as well. What info best serves my purpose etc.

Here's what mine looks like:

Date at the top of the page, Food/drink name (even if it's just water), the brand (if it's a processed food), time of consumption, a rough estimate of how much I ate, and I'll put a star next to it if I've never had it before, or if I haven't had it since I started my diary. You're going to have a lot of stars in the beginning.

Also, if I'm making the food, which is a lot of the time, I will make a note if I'm using a different brand of an ingredient, and what that brand is. When I first started my diary, I listed all the ingredients and their brands, not just the foods. It's a lot of time and work, but it's worth it.

Make sure you're writing this as you're eating or preparing your food, otherwise you'll forget important details.

And, I always leave some room at the end of each day in my diary just in case I do breakout. If I do, I write down where the breakout is and how bad it is; number of cysts, size and level of inflammation etc.

So now that you've got a crap ton of data, it's time to put it to work for you. If you have a breakout, go back at least two days in your diary and analyze the crap out of everything. If you still have boxes of the foods you ate, go through the ingredients and double-check, google any of the ingredients you can't pronounce and check to see if there's a connection to one of your triggers, ie gluten/nightshades. If you don't have the bag/box, try looking up the ingredients online, and if you can't do that or if you're not sure which food is the problem child, then highlight that particular food.

Usually you're left with about 3-5 possible culprits, depending on what you're eating. Don't jump to conclusions and eliminate all of them, wait until after you're breakout is cleared and then try them again, all on a different day. If you're just starting out, I'd recommend separting them by three days until you can get a feel for how long it takes for you to flare. Make sure you test all of them, even if you flare from the very first one, it's possible it could've been more or even all of them. This is especially helpful if you're still not sure what your triggers are (nuts, gluten, and nightshades etc).

Then, keep a list in your diary of the foods you cannot eat. I usually just keep some loose leaf paper stapled at the very back of my diary and write down my no-go foods as they appear. Again, include the name and brand of the food, I also write down the date I last ate it in my food diary that way I can go back and look and see what kind of breakout it caused.

This is a lot of work, and takes a lot of dedication, especially in the beginning. But it'll get easier the longer you do it, and eventually it'll just be second nature to you.

Take it with you everywhere. I mean everywhere. It's hard to remember everything on your no-go list, so it makes it alot easier to shop at the grocery store. Also, I have a list of dishes at restaurants that are safe for me to eat, and ones that are no-gos.

I'm hoping that someday, companies will start labelling their products nightshade-free the way they're doing with gluten now. But I'll probably be 90 years old and on my deathbed by the time that happens.

Good luck!

Hi atticus, thanks for the detailed information about the process you used to track your food triggers. This condition has been bringing me down so much lately since I limit my social interaction with others now because of it. Having someone who understands how it is to have HS take the time to help out as you did means a lot...it's hard to explain and express my gratitude here but it's much appreciated. I will utilize these techniques too and hopefully figure out what my trigger foods are. Thank you!!

 

Glad to help. And I'm sorry to hear that this is controlling your life so much. But I do understand. I actually used to a wear a car air freshener as a necklace or in my pocket to cover up the odor from the darn things. And of course the pain and recovery time was pretty ridiculous.

I remember one of my girlfriends teasing me for wincing every time I sat down because she thought my husband and I had really gone at it the night before. We hadn't, I just a particularly bad flare-up at the time in a few very uncomfortable places. But what was I going to say, "No my hubby and I didn't have wild monkey sex last night, I just have a few raging boils the size of quarters on my butt and my hoohah." Yeah, not so much.

Make sure you have someone in your life to talk to about this. A friend or family member you trust. Once I worked up the courage to explain things to my friends, most of them were totally on board. There was only one that looked at me like I was a leper. She ditched me, but I'm actually glad she did. It saved me the trouble. I didn't need a friend like that anyway.

Hopefully this will help. And just because you have HS doesn't mean HS has to have you. Don't let this affect your relationships with other people. HS is like an abusive boyfriend. It's controlling, manipulative and isolating and it makes a serious dent in your self-esteem. Don't let it win. Kick its butt to the curb and go out have fun, and have a life.

Hi atticus, im from the philippines and im just wondering, when does your HS flare up? I always have it every month whenever im about to have my period. Its always on the same spot. Sometimes its so painful and uncomfortable to walk. I tried using turmeric paste if it is swollen. I covered it overnight, sometimes it became small. But its not effective everytime. I also tried rubbing some virgin coconut oil its kinda effective cause the inflammation became small until its gone but the problem is its still there. I think i have to drain it so that it will be totally gone. Because if i dont i can still feel them and just flare up again. If i really cant take the pain anymore i just take some regular anti-inflammation tablet from my local drugstore.

Oh i forgot, sometimes i have it also on my armpits. Although theyre not that painful unlike on groin area but still its uncomfortable. And i feel that it has deep hole inside but they never pop, its just swollen.

Hope to hear from you.

Thank you

Sorry to hear you've got it in your groin. Worst place to have it in my opinion. My HS doesn't ebb and flow with my period, whether or not that's a good thing, I don't know. It just does whatever the crap it feels like most of the time. But I've talked to a lot of HSers who do find that their HS comes to visit when their "friend" does every month. A lot of them benefit from birth control. I didn't, but again my HS seems not to give a rat's behind about my estrogen level, so it might be worth a shot on your end.

I've done the turmeric paste and it definitely helps with inflammation, but I've never had one raise to the surface and pop because of it. But most of mine were pretty deep and entrenched by the time I started resorting to home remedies. I've found combining honey and turmeric powder to be the most effective. Apparently honey has some antibiotic properties. I leave it on overnight, and use a moist hot compress for about an hour at a time and that seems to take the heat out of the suckers for the most part. Ichthammol ointment, like boil-eze, seems to be pretty popular in the HS community as well, just follow the instructions on the box carefully.

Make sure you're not squeezing them, tempting as it might be, they'll multiply like Hydra's heads. I almost always had to go to a doctor to have them drained once they got big enough to be a problem. They would just keep getting infected. I wouldn't recommend lancing at home unless you know exactly what you're doing.

If the flare in your groin is isolated to one spot, I'd actually recommend having a surgeon take a look at it. Make sure it's a plastic surgeon or a dermatologist who has had experience with removing lesions like this. It won't stop it from reappearing elsewhere, but at least you won't have to deal with that one. Draining alone won't make it go away, it just let's the puss out.

Also, hate to break it to you, but the ones under your arms might not be bad yet, but they will be. If you haven't already, stop using anti-perspirant. That crap only aggravates the heck our of HS.

Have you found your diet to affect your HS in any way?

I've heard of laser treatments helping the people who catch HS early enough, in stage 1 or very early stage 2. But once the disease progresses to a certain point, like when it starts to get very deep and develop sinus tracts, which is when the average person with HS is diagnosed, it's not much help. I think the problem is because HS affects more than just the hair follicle, it's actually in the apocrine glands. I've spoken with a few people who've said the CO2 laser in particular is great at helping to manage their symptoms, but they were all in a fairly early stage of the disease.

I had 4 laser sessions and my HS became worse. I was in late stages though and am now in remission after cutting nightshades, nuts and coconut.