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,...
Okay so my understanding is that HS has 2 varieties. Big pressure bumps and "no skin" areas.
I have the latter EVERYWHERE just like areas that have no skin and are red and constantly drain fluid. I'm a teenager male and i'm obese, I have these things under my breasts under my tummy fold the creases in my legs, in my butt and under my right arm.
It seems to be that the only way to get this s**t to go away is either extensive surgery or a complete diet change both of these are... Out of reach for me. Considering the only person in my family who cooks is my mother, she usually goes for fast food after work which means i'm probably not eating the best stuff in the world. I'm also a rather picky eater when it comes to vegetables and things I just don't like them unless they are in a certain meal. I've done a lot of research into Paleo and Gluten free, needless to say I don't think I can do it i'm just not strong enough.
I've tried to cut down on sugar intake quite a bit a soda only every couple of days and lots of water. But the food... Ugh. I was told in September by a surgeon that surgery was not possible in my condition. I'm not sure how true that is but,,, What else can I do? Anti-Biotics? Those are for inflammation not getting rid of the sores!!!! Retnoids? Hah I guess I should try and give my self cancer as soon as I can right? Destroy my sweat glands? Wow such fun!
I'm at the truest point of desperate for advice... I can't sleep anymore, I walk at a 90 degree angle and can no longer stand up straight. I can no longer sleep in a bed and instead sleep and spend most of the day in a recliner only getting up to use the bath room. I'm scared and helpless, doctors have nothing to offer me, creams are worthless and meds are worthless it seems. How many more years do I have to suffer until I go into remission? I simply don't know anything anymore. I'll be an adult next year with no way to do manual labor or even think about going to a work place.
If you made it this far I thank you very much... I just need to let it all out.
I have the latter EVERYWHERE just like areas that have no skin and are red and constantly drain fluid. I'm a teenager male and i'm obese, I have these things under my breasts under my tummy fold the creases in my legs, in my butt and under my right arm.
It seems to be that the only way to get this s**t to go away is either extensive surgery or a complete diet change both of these are... Out of reach for me. Considering the only person in my family who cooks is my mother, she usually goes for fast food after work which means i'm probably not eating the best stuff in the world. I'm also a rather picky eater when it comes to vegetables and things I just don't like them unless they are in a certain meal. I've done a lot of research into Paleo and Gluten free, needless to say I don't think I can do it i'm just not strong enough.
I've tried to cut down on sugar intake quite a bit a soda only every couple of days and lots of water. But the food... Ugh. I was told in September by a surgeon that surgery was not possible in my condition. I'm not sure how true that is but,,, What else can I do? Anti-Biotics? Those are for inflammation not getting rid of the sores!!!! Retnoids? Hah I guess I should try and give my self cancer as soon as I can right? Destroy my sweat glands? Wow such fun!
I'm at the truest point of desperate for advice... I can't sleep anymore, I walk at a 90 degree angle and can no longer stand up straight. I can no longer sleep in a bed and instead sleep and spend most of the day in a recliner only getting up to use the bath room. I'm scared and helpless, doctors have nothing to offer me, creams are worthless and meds are worthless it seems. How many more years do I have to suffer until I go into remission? I simply don't know anything anymore. I'll be an adult next year with no way to do manual labor or even think about going to a work place.
If you made it this far I thank you very much... I just need to let it all out.
Lying still in one place all day probably isn't helping much either. You might be developing bead sores. Even if you're just walking around your home, try to get up and move about more often. Do you take anything for pain?
So sorry to hear you're having such a difficult time. I had terrible HS when I was a teenager and I had extensive surgery which helped. It also sounds like you don't have much support from your doctor or your family. It is a terrible thing to go through as a teenager and I truly understand how you feel.
My advice would be to get a second opinion. See a new doctor and ask what they offer. You shouldn't be living in this much pain without any treatment. There are a few new drugs on the market (not antibiotics, they don't work) which might help you. Also if you feel surgery would help you then I really encourage you to week another opinion about doing this. Changing your diet may help also. Perhaps you need to have a heart to heart with your mum and your condition and how much your suffering and perhaps she will help you with your diet.
Best wishes and keep us updated.
Jam, They are red and ooze a colorless liquid and sometimes blood they don't really look stretched per se but it's probably very similar.
Tehdreamer, I'm getting my mom to pick me up Dial tomorrow when she goes to the store. Only thing is is that I can't really touch them I usually wash around them. My family actually thought I had bed sores before I was diagnosed so perhaps it's a combination of both. I take Naproxen Sodium for pain.
Zooey, Thanks for your opinion. I'm terrified of surgery and think it would be an absolute last resort. I've also talked to my mother about diet change several times every time she say's "I don't know what to feed you" and leaves it at that even though i've given her lot's of resources on the matter.
I am not a doctor and I am not a scientist --
IMHO it is very likely that you have HS.
There is no "hard" scientific evidence but there is quite a bit of anecdotal evidence on the internet that a change in diet can improve this condition substaintially.
Moreover, if you continue overeating you will sooner or later most propably develop diabetes type 2, high blood pressure/metabolic syndrome.
What more reasons do you need to make a change in your diet?
If your mother is unwilling to change the way she cooks or the meals she buys then you have to learn how to prepare meals yourself.
I consider myself a massive sugar/carb addict. Cutting out almost ALL sugar and high-carb food seems daunting at first, but I have found that once I am off the sugar/high carbs, I lose complete interest in them. No cravings whatsoever. Of course it is difficult to stay low carb, since we live in a high carb world.
I am currently on a low carb/paleo-inspired diet again after falling off the waggon last year during a vacation and regaining most of what I had lost during my first experiment with low carb in which I quite effortlessly lost a lot of weight in a couple of months without sports I may add as I hate sports.
I have been overweight most of my life, if though never morbidly obese.
Anyway, my HS seems to have improved somewhat in the past month, but it's way too early to tell. But even when it came back with a vengeance I would continue to eat low starch/low sugar food to prevent diabetes.
I will keep you all posted of any results of my current experiment. lol
Please don't take this the wrong way-- I do know it's hard, but it's not impossible.
I may come across as harsh sometimes, but I am not. I really care about people, even strangers.
I am just crazy like that. Get better soon! christina
I feel ya, man. I'm sorry you are going through this and that your support system is not so good.
But I hear you....every word, even the stuff about being a picky eater. I am a major fruit/veggie phobic and have been for all of my 40 years. But let me tell you something....if you are truly desperate, you have to give Paleo a try.
I just got done reading The Hidden Plague by Tara Grant and I am 99.9% convinced that Paleo is the way to go. I never used to be able to choke down veggies. But some things I discovered that helped me tremendously is that I CAN drink them. I bought a Nutribullet and am making some pretty decent smoothies (dairy/gluten free) basically Paleo in a blender. And then meat on the side if I need some more "serious" protein for staying power.
I get that you are not yet an adult and not working, so funds might be limited on your ability to shop for yourself or get a fancy blender, but any blender will work...you'd just have to strain off the pulpy stuff if it didn't get completely smooth. I literally used to gag trying to eat veggies and fruits....I could always get them in in like a soup where they are soft and mushy and taste like the broth (like beef vegetable or whatever) but I could never just sit down and have a crunchy salad. Something about the texture and bitterness of raw veggies and the texture of raw fruits. But then I discovered the smoothies.
Anyway, that's how I am able to choke down the yucky stuff. And really, it isn't choking down anymore because that implies it is unpleasant, which it is not any more. Anyway, sorry about the novel. I hope this helps. I start Paleo next week. I'll try to come back and tell you how it goes. I'm feeling optimistic for the first time in forever, though!
Take care
Zooey
Try to keep the carbs down. Don't eat tons of starchy root veggies. Such as yams.
And if it doesn't help with HS, hey, at least you WILL lose weight. ;)
I have been struggling with overeating and weight all my life. I am a quite the sugar/carb addict. It's seems unthinkable, but once you eat very little sugar the constant craving stops. Not immediately but within two weeks or so. Try to be patient.
Personally, I think the key to making HS more managable is a (very) low carb diet combined with using healthy fats such as butter, olive oil and coconut oil. It takes a while for your body to adapt. Again be a little patient.
Good luck.
I'M still experimenting on myself. I am boil-free. Right now I only have one relatively small pimple. All the old boils seem dormant.
I also stopped taking a shower every day with antibaterial soap (just to see what happens) -- it seems to have little to no influence.
I have to admit though that I also cut out nightshades even though I don't even believe it has anything to do with it. But about two weeks ago I had some tomato sauce, quite a bit, and within hours I had a boil. I will reintruduce nightshades at some point.
Jeez, I really do hope I can force this crap into remission. I am so effing tired of it.