HS sufferer

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Hi, my name is Alyse I am 21 years old and have been suffering from HS for about 3-4 years now.

Recently in the last year, I have been in and out of the doctors constantly getting lanced and stuck with needles. I get excruciating pain to the point where I can't walk if they are in my groin but I also get them in my arm pits. I am literally living with this every single day, day in, day out... And I'm exhausted from being in so much pain.

I am a heavy smoker of both cigarettes and unfortunately marijuana and am finding it so difficult to give up, even though smoking is a huge factor in HS.

I don't really know what I'm asking from anyone, I guess I would just like to talk to people who suffer from the same disease 😞

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16 Replies

  • Posted

    Hi, first of all, you are not alone. This is a condition that can make you feel quite isolated, as it's not exactly something you can tell people about easily, or show. with a lot of conditions you can talk about it easily and tell people what you are going through, but it's much harder with this one.

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  • Posted

    There's a lot of useful stuff on here, you'll be able to read what has helped other sufferers, and feel like you can say what's happening with you.

    Definitely smoking isn't helping you, although I understand that it provides you with a source of comfort when you feel really down and despairing of this condition.

    ?Have you tried cutting out dairy? This has helped me, and there are lots of people in this forum who have found a real link.

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    • Posted

      My mother and her sister also suffer from this condition. My mothers sister had surgery under her arms years ago ( all her sweat glands removed) my mother still suffers with it as she found that when she had surgery when she was in her teenage years, it multiplied them. she finds that her diet flares up her cysts, when she eats a bad diet they will obviously flare up, but I never really noticed that mine are dairy/food related. Yet again, I've never logged what I eat and tried to see if that was the reason, so I think that is my next step

      Thankyou, this has given me so much relief noticing how many people I can talk to this about. I'm so young and this is really affecting me. Especially as I get them mostly in my groin area 😞

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    • Posted

      Try keeping a log, you might be surprised at the link between eating certain things and the amount/severity of flare ups you get.
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  • Posted

    girl quit ....do anything..vape with no nicotine until your weaned from..Im 50 and a year quit now and no flares, maybe a little bitty one but that is all and knocked out nightshade foods..im finally feeling like a woman and who i wanted to be again!
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    • Posted

      I'm finding it so difficult to quit, especially with all the stress I have at the moment. I wish I never got addicted. I never realised how hard it is to stop, and stop for good. But i KNOW it is such a big factor and once I quit I will see results in months, it's just taking that leap I guess

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    • Posted

      keep trying, you can do it..i smoked for 30 years, and i did it..I vaped at first with no nicotine juice and it helped so much...the food also is key..we somehow are sick to certain root foods and whatever poison is in ciggs!
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    • Posted

      You are so tight Tammyjo! We are all different and some of can't tolerate certain foods, and sickness is the result.

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    • Posted

      haha..I woulda figured it out..lol..keep up the work..it will pay off, quality of luife with HS can be so difficult, but if we can help ourselves ..oh man!..what a revelation...and im just a a year change
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    • Posted

      Can I ask you about the nightshades? What did you cut out and how fast did you see an improvement?
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    • Posted

      almost right away , I did the quitting of the smokes and that together...I googled all nightshade foods, and got a list of high infamatory foods and omited them all, well occasionally I will just take a bite of what I want, but have restricted myself of all, and it helped with no weight gain during the quitting smoking process..its been a year like i said, i know i will always have HS, i know it will always be a struggle, but if i myself can keep the flares at bay, i call that a huge plus..oh the Dr visits over my life through this...humiliating
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  • Posted

    Hello. I have also been suffering from HS for 3 years now (I'm 19). I know how you feel, this is the first time I talk to someone who is also experinicng it and it is nice to know that I'm not alone in this.  I'm so glad I have finally decided to search informations about this  disease in English because I found so much more advices than in my native language. For sure I will try to cut on diary products now. I have been taking accutane for 8 moths, even my doctor was suprised that it doesn't work that well for me. I have HS only in my groin area after Acuutane it gor clearer but still new are forming and i still feel some of the side effects of this medication.I used to try a lot of natural treatment like epsom salt, drinking grapefruit seed extract, Ichthyol Ointment etc. Now i just feel a bit hopeless and I don't know if it is possible to cure it. I'm also very insecure about the scars that it has left. I guess I will try to change my diet now and see if it works. Please feel free to write to me anytime you want to. We can support each other.

     

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    • Posted

      Acutane will not help HS..i did that too...oh girl try the diet, it will so help..and the scars will fade when infamation fades.
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