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 don't have an official diagnosis of HS but I am sure that is what I have, my mother has it and is pretty debilitated by it although she has other health issues too which don't help.
I am just back from the out of hours doctor because of a lump in my groin which was stopping me from even being able to get to the bathroom and back with the pain. I haven't went to the doctors about it before because usually my lumps are really small and disappear before I even manage to get an appointment which takes ages here.
I have so many concerns, I am a student nurse and am already at the limit of the amount of time I can have off due to a back injury. If I need more time off they will throw me off the course - or at least make me take a year out, that is assuming I would still pass my occupational health clearance.
The doctor I seen today said it definitely sounds like I do have HS, given what I told her and the fact that my mother has it but she wants me to see my own doctor for a diagnosis and referral to dermatology which will likely take months. So in the mean time I have been speaking to my mother and going over the info she was given and I am really worried that there is nothing I am going to be able to do to try and help myself.
I cant change my diet, I have selective eating disorder so its just not possible for me. Try as I might I cannot lose weight, I have been to the doctor about it and everything because I have put on so much weight for no apparent reason but all my tests came back fine, I was basically told to join slimming world even though they know with my food issues this isn't possible for me. I do smoke so I guess making an attempt to quit is a good place to start although it hasn't helped my mother who quit around four years ago.
I don't want to take long term antibiotics, I have had to much antibiotic exposure from when I was young. I was born with bad kidneys and was on antibiotics all the time as a kid, over exposure is really bad for you and I must already be at that limit. Although I am taking the ones I was given today in the hope that I might be able to actually get on with things in the next few days.
Does anyone have any advice for me? anything I can do at all to try and help myself? I know there is no cure but there must be something I can do. I just don't want to end up as bad as my mum, her doctor says its too late for them to do anything with her now.
I am just back from the out of hours doctor because of a lump in my groin which was stopping me from even being able to get to the bathroom and back with the pain. I haven't went to the doctors about it before because usually my lumps are really small and disappear before I even manage to get an appointment which takes ages here.
I have so many concerns, I am a student nurse and am already at the limit of the amount of time I can have off due to a back injury. If I need more time off they will throw me off the course - or at least make me take a year out, that is assuming I would still pass my occupational health clearance.
The doctor I seen today said it definitely sounds like I do have HS, given what I told her and the fact that my mother has it but she wants me to see my own doctor for a diagnosis and referral to dermatology which will likely take months. So in the mean time I have been speaking to my mother and going over the info she was given and I am really worried that there is nothing I am going to be able to do to try and help myself.
I cant change my diet, I have selective eating disorder so its just not possible for me. Try as I might I cannot lose weight, I have been to the doctor about it and everything because I have put on so much weight for no apparent reason but all my tests came back fine, I was basically told to join slimming world even though they know with my food issues this isn't possible for me. I do smoke so I guess making an attempt to quit is a good place to start although it hasn't helped my mother who quit around four years ago.
I don't want to take long term antibiotics, I have had to much antibiotic exposure from when I was young. I was born with bad kidneys and was on antibiotics all the time as a kid, over exposure is really bad for you and I must already be at that limit. Although I am taking the ones I was given today in the hope that I might be able to actually get on with things in the next few days.
Does anyone have any advice for me? anything I can do at all to try and help myself? I know there is no cure but there must be something I can do. I just don't want to end up as bad as my mum, her doctor says its too late for them to do anything with her now.
From reading through the messages, I Would say that one thing that seems to come up again and again is that what works for one person may not work for another. You've got to keep trying different treatments and see what helps you. I know that antibacterial ointments don't help me at all, I have tried them so often over the years and they seem to just make things worse for me. Obviously it works for Respectful, though! And hot compresses definitely help me. Lots of people here swear by removing trigger foods from their diet, but what that trigger food is seems to vary from person to person (is it dairy? Sugar? Nightshades? Gluten?) Mine get worse with hormone swings, like my period or pregnancy, but others report this hasn't been the case for them.
So I think the best answer is, you've just got to try different things, and just hope you hit on something that helps. In the meantime we're all in this together, and we can support each other, and come up with ideas, and you'll know you're not alone!
Triggers are a pretty mysterious business as tulip76 said - I've never been able to make some of the connections to different foods like dairy or gluten, or get help by avoiding them, like some people. I do see people list stress as a trigger quite often, even my doc was aware of that one, so that's a big thing I try to avoid even though it can be really hard when you're at your wits' end.
Not quite sure what makes stress hard to banish, almost like in the back of my mind I thought it must have some useful purpose as a motivator or something, like if I were just stressed out enough I'd get more chores done or something, or like I was trying to hard to be less stressed, which can turn into a big stress in itself sneaking up on you? I finally had to just give myself some kind of ultimatum that stress just has no useful place whatsoever in all this, it just doesn't.
All but the worst, most stubborn boils that I've had usually do respond to heat, a hot water bottle or heating pad has helped to promote some drainage and relief on a number of occasions I'm sure.
This disease comes from within. Your body is allergic to certain foods. These foods make your body inflame to get rid of the toxins.
All the solutions I read here are to treat the boils. This has nothing to do with tackling the real problem.
Stop eating nightshade. These are tomatoes, tobacco plant (so stop smoking) potatoes, eggplant and peppers. Plants of the nightshade family contain alkaloid which help them survive (they don't want to be eaten). Make sure you eliminate it all. Potato products are very divers (chips etc.)
Try this for a month and I'm sure you will heal.
If you keep eating these plants your body will keep getting rid of the alkaloid trough these terrible boils. (I have experienced it myself after 10 years of suffering and have witnessed several other cases)
Goodluck!
1) Be very careful using antibiotics creams and ointments in the genital areas - you can end up with a nasty yeast infection to go along with your HS lesions. Really all the antibiotic will do is protect from infection as HS typically isn't caused by an infection.
2) You may want to try a vinegar bath for relief when having a flare/breakout. Simply pour about a cup of white vinegar into a bathtub of warm water and soak the affected areas in it for 30+ minutes. If you have a large tub, you may want to double the amount of vinegar. The vinegar kills germs and helps dry things out while the warm water helps soothe.
3) You mention having selective eating disorder but you didn't specify which foods you gravitate towards. Have you looked at what an AIP diet entails? Its not about eating from a proscribed list of foods - rather its about eliminating certain foods for 2-3 weeks and then reintroducing them one at a time and monitoring for any changes in your lesions. The foods that are recommended to eliminate are gluten (any food with wheat or wheat flour in it), dairy, eggs and nightshades (potatoes, tomatoes, eggplant, paprika, tobacco, etc). You could also try a modified version of AIP like I did. I could not bring myself to eliminate them all at once so I eliminated one at a time and monitored for changes. When I eliminated gluten my body responded - the lesions started healing faster and clearing up with fewer to no new lesions cropping up. I went 6 weeks without a flare and tried adding it back in and within 2 days was seeing the signs of an impending flare which came on day 3. I know with SED there is pickiness involved, you just might have to work around it one food group at a time. Quitting gluten has been one of the hardest things I've ever had to do but everytime I think about indulging I just remind myself how much the lesions hurt, how long they last and what plans do I have over the next 2-3 weeks that a flare will ruin.
I hope some of this helps you find relief from HS.
Beyond that, maybe if you can't cut out foods you can change when and how you eat them? I get less breakouts when I keep my blood sugar in the normal range and as even as possible. So no carbs without a protein or fat to slow down sugar absorption. That kind of thing.
http://jn.nutrition.org/content/128/3/577.full
http://jonbarron.org/herbal-library/foods/black-pepper
I'm still a little confused about this stuff... The first link actually calls out paprika and cayenne for being Nightshades and makes it sound like increasing intestinal permeability is a property of that family of plants? Is THAT why some people have trouble with Nightshades, or are there other reasons for that?
New rule, more coffee before posting.
There's good evidence that HS is caused by a response in your immune system to the chemicals in your body from eating and, in your case, smoking. There's two major groups of food that removing from your diet may be a trigger to dramatically lessen your symptoms. Gluten is one and nightshades, which tobacco belongs to, is another.
If you can't make dietary changes or lose weight, at least quit smoking. Remember it's not the nicotine but the tobacco itself, so you can switch to alternatives like e-cigs and nicotine patches/gum.
Speaking of weight, most people (think over 95%) with HS are obese or above average overweight. I don't think this is a coincidence.
However black pepper is from a different species right? Not related to the nightshades?
Some people can have nightshade plants without breakouts and some can't. So it just depends.