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,...
Do any of you find yourself falling into a deep depression because of this condition? I'm 23, and in the past year or so I've attempted suicide twice. I understand that is not the way to handle things and that it is incredibly selfish. I think when you're dealing with this much pain you're not worried about coming off as "selfish", you just want the pain to stop. Both times I took 40-60 various pills, passed out and woke up in a puddle of my own vomit. I told my parents about my suicide attempt this time because I knew if there was a third time I wouldn't be so lucky. I've been dealing with this since sometime in highschool. Back then, the boils would come and go and they were managable. For the past three years or so they haven't gone away. They're constant, nothing goes away but more and more pop up. A majority of them have begun to scar over so a lot of the boils have become very hard feeling. It's under my arms, all over my groin area, and inbetween my thighs. I had one pop up under a breast but thankfully it never returned. I've tried every drug on the market. Humira (got crazy side effects), remicade (developed antibodies), antibiotics (been on them for years and none of them work anymore) and am currently trying a drug called Dapasone (and much more). I'm simply tired. Mentally and physically. For years i've been severely anemic because of the amount of blood I lose every day from the drainage. I'm in so much pain and so tired. Last year I saw a nutritionist who recommended I cut back on processed foods and animal products (I also have crohns so certain things are hard to digest). I stopped eating meat and cut back on a lot of the bad stuff and I think the diet change was one of the best things I've done for myself. I've lost about 50lbs from diet alone and look great. But sadly my HS hasn't gotten any better. I currently am in the middle of a pretty bad breakout on my thighs and the pain is so bad. I don't sleep very much because of the amount of pain i'm in all the time and the depression keeps me up. Everything just feels so heavy. I think i've also picked up a pretty bad pill popping addiction as well. I'll go through a bottle of 15 percocets in one day and I don't want to be this person anymore. I don't go out, I don't sleep. Sometimes I don't eat or even get out of bed. I hate that i'm on summer break because at least when I was in school I had to force myself to leave the house. Even though I would go to school high on pain killers daily, that to me was better than being high and alone in my apartment for days at a time. I feel very alone. Doctors have told me they aren't sure what to do with me anymore. They tell me surgery is my only option at this point and I'm afraid to go there because I want to believe that something is going to heal me. Some prayer, some medication, something. I've heard a lot of horror stories about peoples surgeries and I just want to make sure that is my very last option because the hs is EVERYWHERE and it would take multiple surgeries in order to remove it all.
I just don't know what to do. I'm just ranting at this point, but like I said I feel very alone in this. I know you are all suffering just like me and I always appreciate everyone's words of encouragement. I just want answers :/
Please pray for me if you believe in that sort of thing, my mind is running on negativity and percocets. Or let me know what you do in order to stop the pain.
I've been using teatree oil and it helps very well with the bad smell of the drainage. I'm also starting to take vitamins, hoping those will help with the tiredness and anemia :/
- Elizabeth
I just don't know what to do. I'm just ranting at this point, but like I said I feel very alone in this. I know you are all suffering just like me and I always appreciate everyone's words of encouragement. I just want answers :/
Please pray for me if you believe in that sort of thing, my mind is running on negativity and percocets. Or let me know what you do in order to stop the pain.
I've been using teatree oil and it helps very well with the bad smell of the drainage. I'm also starting to take vitamins, hoping those will help with the tiredness and anemia :/
- Elizabeth
That's an incredible effort losing 50lbs, that's something to be proud of. Many if us see doctors and dermatologists that don't seem to help, so you're not alone there.
I'm 40 and it's bothered me my whole life but I sorta just deal with it and hide it. I had one on my neck that was totally visible and operated on 3 times before they could get rid of it. That last attempt the surgeon warned me would be the last because if he went further he could damage a nerve and affect my arm... I realised then I'd rather have the cyst... but he did get it out for me.
I cut out all sorts of foods and smoking and could never get it under control. I lived on juices for 6 months and didn't think I could be eating any more healthily. After 20 years.... I think I finally worked it out.
Capsicum, potato and dairy. Once you find your triggers it's so uplifting. I totally agree the constant pain really gets you down and I was more depressed than I realised. I didn't even realise what life could be without pain
One serving of chips fortnight will keep me in pain and I would never know that was it. Love my peppers and capsicum so they were going in the juices. So even eating relatively well I was still eating those trigger foods.
There is some real research going on now for HS. Pointing the finger at dairy and hormones. And in the forums many people including myself absolutely sure it's triggered by nightshade vegetables.
So you've already proven you can do improve your diet incredibly. Take it another step and make a food diary (or an app like MySymptoms)... for me the effects of food take about 12 hrs. Eating unprocessed stiff is a real advantage as you will know exactly what you are eating.
There is a book by Tara Grant called The Hidden Plague... she was a sufferer and it's so worth a read. Also a professor named William F Danby has published a few papers you can online and he is very sympathetic to the disease and publishes really current and useful stuff.
I stick around at home a lot too... it's a bit boring sometimes but you're not the only one. I sorta like it.
Tony
I too have had my share of depression over the years, directly related to the HS. Especially with recurring flare ups without any remission. The pain does strange things to our thinking. I want you to know that some of us understand your suffering and share your pain. I know it's not much consolation but just knowing there are people who understand and care helps remove some of the isolation.
Don't give up, things will improve. Take the surgeries, they'll help. You've got a lifetime of living to do and when you do get relief, even partial relief, savour it and try to move forward. I hope things improve soon.
Tonster, did you ever do any type of allergy tests or elimination diets or did you simply just write down what you ate daily? I want this all to end so bad and if I find out it's something as simple as an "allergy" I'll be the happiest person on earth. I'm going to download that app and begin tracking what I eat. I was also thinking of starting another juice fast but it might be smart to do allergy testing beforehand.
Thanks again for you guy's help. Believe it or not this gave me a bit of hope.
I actually had a massive pilonidal cyst removed and during that time was in 3x a day intravenous antibiotics which cleared up my HS. Coming out of hospital after 10 days I felt better than ever. I ate normally... I had a flair... got some more antibiotics, it went away. 3 weeks later another flare. Realised I had just eaten roast potatoes the night before and then thought back to the previous one, I had sat at a cafe and eaten a bowl of potato wedges!
So I had a bit if a clean slate to start with. I don't think anything will show up in an allergy test, it's more of a food intolerance.
Try maybe to go to a really really plain diet, leafy vegatables, meat, chicken. There's. Like of food that isn't commonly known to have intolerances. Paprika is really hard to avoid watch that one.
You know the cycle if your lesions... getting worse.. then settling down. If you can get to a point in a couple if weeks where you don't currently have one getting worse.... then is you chance to watch really closely what you eat when you get that itchy and painful feeling the next day which you know is going to flare.
I ate some salami in a sandwich the other day... and it gave me a tiny flare in old scare tissue.. suspect paprika in that case.
People say avoid dairy... quite strongly. There seems to be good evidence with that... but I haven't done so and was still able to find the triggers.
Problem with the juice diet... I was still putting capsicum in mine... so maybe try that idea but avoid nightshades... I think they're the only known vegetable to trigger
Thanks again