I don't know how much longer I can take it

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I've had hs for probably around 15 years. I just recently learned what it was called in March of this year. Mainly because I was too embarrassed to go seek medical help, in the beginning I did try to get help but had terrible experiences,at 17 being a shy girl and not really knowing an adult that I can trust, I tried to see doctors on my own and only to be misdiagnosed and then just too embarrassed to go back again and I just lived with it, with all the pain and discomfort. Finally August of last year I decided that I didn't want this pain anymore and just kept going to see a regular doctor, he made me feel like a human being in pain not like just a disgusting unclean person. He referred me to a dermatologist that took one look and bam hidradenitis suppurativa it only took her a minute to look ... She left the room came back and gave me steroid shots behind my neck, under my armpits, my groin, buttocks & under my breasts.. So I was supposed to first go see her in oct/15 n had to reschedule for dec/15 then again had to reschedule for March/16 -finally made that one-was supposed to go back June/16.... But had to reschedule again until August... Having so much difficulty financially as I have to travel about 6 hours and spend a night... She had me on 2 different antibiotics but had to stop taking one because my stomach can't handle it... I'm 33 & I feel like an 80 ur old I can barely move, I'm diabetic, anemic, and so depressed not to mention the pain I'm in 24/7. I HATE that I have to depend on my hubby for every little thing even helping me to get up and go use the bathroom is a big deal!! I'm sick of not being able to do simple household chores and to be looked at as lazy... I'm tired of my family wondering why I don't get out of bed. They just don't understand the pain. I just wish it was gone. I pray and pray and I just wonder what I have done so wrong in my life to deserve this?!? I feel like such a burden. I'm so sad that I can't take my kids to family outings I used to love the outdoors and now I don't even want to show my face in public because I need help just to walk! I just wanted to let it out. I have absolutely no one to talk to about this because no one knows anything about it. Sorry for such a long post.

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  • Posted

    Hi HS, Warrior, it's a curse isn't it, I lived with it for 20 years and at 40 finally worked out its a food intolerance to potato and paprika (possibly other nightshades to a lesser extent). I'm not being paid to say this and I'm not a hippy, I hope maybe you could find a food intolerance... dairy and high GI foods are also blamed. I visited many GPs and dermatologists and had many medications... they can help with particular lesions, but they won't put it into remission and none of them seemed aware of diet.

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    Hi. First of all I love the nickname you came up with. I say that because you have to be a warrior having this disease. It is a very tough thing to have and live with. You are not alone. I have also felt the same way as you do. I probably don't have it as bad as you, yet, but I have had enough pain so far to feel like I do. I have it worse in my armpits but I think I have it elsewhere...it is very painful, very uncomfortable. It's no way anyone wants to live. I'm sorry you feel the way that you do. I'm sorry that you have so much pain. I also hope that you find some relief at some point. Having this disease is a hard pill to swallow. I also have a child and can't be the 100% person I'd like to be but I still try anyway. I think it's a common thing to be depressed when you have HS. I am depressed due to having HS but I also have other health problems as well that just add to the problem. One of my health problems actually plays a roll in having HS. I have never seen remission since before being diagnosed with HS cuz I have had HS for almost a year before finding out what it actually was by my dermatologist. I've only had mine for a few years or so now not as long as you have so I'm sure you're very tired of dealing with it. I know you're distressed and upset, frustrated but there's nothing wrong with needing help from your husband. He's your partner, he's supposed to be someone you count on. For anything. There's also nothing wrong with you needing to be in bed so you can heal or laid up somehwere else to heal. That's what you need to do, at least heal enough until you're at a point where you can move or do what you'd like to do. You have to try not to be so hard on yourself. You have enoigh pressure as it is. You have no need to be or feel embarrassed. You're a human being. We're not made of steel unfortunately. You have a terrible disease that you fight every single day and that's what makes you a warrior. I hope that you find some peace and I hope you have an easy road to heal and keep your chin up. Good luck and I wish you well.

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  • Posted

    I was stage 3 HS and would have been disabled by now had it not been for finding my food sensitivities : nightshades, coconut and nuts. Everyone can have different sensitivities that cause inflammation but nightshades can be harmful to people with autoimmune conditions because of their natural pesticide. It took a good 6-8 weeks for my cysts to go away but the inflammation won't down the first day that I cut out nightshades. I also love the outdoors and being active with my family! I cried the first time that I was able to ride a bike with them after years of not being able to for so long! Good luck and God bless!

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  • Posted

    Hi Hs warrior, I feel your pain and just know that u are not alone! Ive struggled with this for 30 years now.. and with age it gets worse..

    ive been to several doctors tried several antibiotics nothing ever worked... 

    now im trying biological therapy Remicade keeping my fingers crossed...

    good luck! 

     

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  • Posted

    Hi HS Warrior. You are not alone. I've been dealing with this for 14 years now. Although I did not now what it was until about 4 years ago when i self diagnosed after a long online search and then subsequently had it confirmed by a dermatologist. There are days when the depression sets in so bad, I feel like I can't and don't want to go on. My children keep me going of course and I try to just take it one day at a time. These last few months I finally decided to try the primal route. It's very difficult however I have noticed, almost immediately a reduction in inflammation and in breakouts. I'd had a large "weeper" for nearly 4 months that after only two weeks finally stopped weeping and slowly reduced in size. Any new flares I've had have been smaller, less painful and no new weepers since then. While I still have a ways to go I think i'm beginning to identify at least some foods that trigger the HS for me. If i have anything with gluten for 2 days in a row on the 3rd day i always end up with a flare. I'm hoping this change will allow me to get it under control enough to get back to mostly normal living. I know it doesn't work for everyone but I figured it was worth a shot,. 

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