In extreme pain, any remedies would be greatly appreciated.

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I'm Katelyn a 24 yr old female. I have had HS for 10+ years now and haven't had any luck with getting my HS under control. Right now I have two bad/reoccurring flare ups under my arm and it's just really making it hard for me to do anything including sleep.

In 2011 I had an ovarian cyst that grew into a 12 lb benign tumor in my abdomen removed. I had 31 stables in my stomach and now have a pretty gnarley scar. Dealing with HS has changed my life. I now cherish every single day that I go pain free (that's a rarity).

I often get depressed about dealing with this. I've never had anyone to relate to what I am going through so I decided to reach out to a forum for help with anything that may have brought you some relief whether it be physically or emotionally.

I've seen countless doctors, dermatologist, and even HS specialists at ucla with no help. I've been on multiple antibiotics, prescribed creams, the whole 9 yards and nothing really seems to help. I don't really have any faith that the antibiotics will work and would rather stay pill free

Thank you if you even took the time to read this, and again ANY advise or testimonies would really help.

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12 Replies

  • Posted

    You poor girl!!! Have you not been offered underarm surgery. I know exactly what you're going through as I was the same at your age. I had surgery on both armpits when I was 32 years old when my second child was 5 months old. I'm 60 now and was one of the fortunate ones as it didn't re-occur (although I still had problems elsewhere). I suffered terribly until I had the surgery. The pain was excrutiating. Maybe you can look into it. The way I looked at it was that I had nothing to lose by having surgery but you would really need to decide what is best for you as not everyone will agree but for me it really was a success.

    The one thing I've found with this terrible disease is to try always to wear natural fabric next to the skin on the affected areas. Also, try to keep dry and try  not to wear man made materials as they tend to make you sweat more.

    I hope this is of a little help to you Katelyn and that you get some relief from your horrible pain very soon be it with surgery or some other way. Best of luck to you and please feel free to ask me anything if you want.

    PS. I also found that once I started the menopause the outbreaks eased off somewhat (but that's a long way off for you yet sweetheart).

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    • Posted

      Thank you so much for even replying. I have been offered the option of surgery, but they wanted to have me on antibiotics first to calm down the effected areas so they're not so heavily inflamed during surgery. It's been 4 years since the first mention of surgery and I've never been in a place where they will operate. There are literally days (like today) I wish I could rip my arm off and just throw the pain away.

      But I have been reading about people cutting out nightshade veggies and have seen some results so I will be trying that. I would so much rather naturally send my body into remission than suffer side effects of the drugs.

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  • Posted

    Hi Katelyn

    I sense the despair in your written words. I would imagine most people on this forum have been (and still are) there and feel your pain.

    I've googled this subject to the hilt and have tried many remedies. The most successful one for me is avoiding nightshade vegetables (tomatoes, potatoes, aubergines etc). I was really dubious when I first started cutting them out, but for me, it seems to do the trick. Not easy especially as they are my favourite vegetables.

    Also agree with Ann about wearing natural, soft fabrics. I avoid sleeveless tops as well, as this causes friction under the arms which always results in an outbreak.

    Try to resist the temptation of poking and prodding, it just makes the swelling and resulting friction even worse.

    The menopause made HS even worse for me, but as you will see, what works for one person doesn't mean it will work for everybody.

    Try to cover the current under arm ones with some kind of dressing. I've found that the friction causes the most pain when the area is red and swollen.

    I really hope some of this helps Katelyn, good luck if you decide to try any remedies and keep us posted if any of them work for you.

    Kay

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    • Posted

      Thank you for replying. These are all great tips but the first I am going to try is cutting out nightshade veggies. Yourself and so many others have seen relief from this and maybe it might help me too. Any advice I can get I am so thankful for. I have been trial and error trying different things for years but my quality of life is not getting better as time is going on.
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  • Posted

    I'm so sorry that you have to deal with this disease, and even more sorry that you've been dealing with it alone. I've always likened HS to an abusive boyfriend. It's isolating, it's a self-esteem killer, it drains your bank account, it controls where can go and what you can do, and you never know when it'll rear it's ugly head and kick your butt. For the what it's worth file, everyone here understands what you're going through.

    Sad to hear nothing has worked for you so far, especially since you've been to see specialists. Unfortunately, no one really knows for sure what causes HS, and by that same token, no one knows how to cure it, so the "specialists" sometimes leave you with more questions than answers. My own GP spoke with three HS specialists and he got different answers out of all of them. Reassuring, right?

    Not sure how much they explained to you about HS, so here's the deal. It's an autoimmune disease, your immune system is literally attacking your apocrine glands. The antiobiotics work to a degree because they are powerful anti-inflammatories. There can be some pretty nasty side-effects because antibiotics were never meant to be taken long-term. They also only work for about 3-18 months, depending on the person. Your body becomes acclimated to the drug and it loses its potency over time. It can be a good short-term solution for some people, but like I said the side-effects can be pretty ugly. Taking an antibiotic for 10 days is a lot different than taking it for 6 months. I especially hate it when the doctor hands you the perscription, tells you to take it for x amount of time, but doesn't explain the lovely side-effects that can and do occur.

    I would really recommend trying to find a trigger. For some people like Kaymate, and me, it's diet. Nightshade vegetables are a definite trigger for me. Other common food triggers are gluten and nuts, but it could be anything. The only way to know for sure is to do an elimination diet (look up autoimmune protocol) and then slowly reintroduce the foods you've eliminated back into your diet and track your symptoms (I use a food diary, it's the best thing ever). LIke Kaymate, I was very skeptical before I did it, my mom's a nurse so I was raised to worship at the altar of western medicine, but I was desperate for any relief that didn't involve going under the knife again. I was at Stage 3 under my arms and in my groin/buttocks region. Now I'm in remission as long as I stay away from those foods. I will break out if I get into them.

    Hormones also seem to be a common trigger. If your HS is affected by your period, then it's likely that at least one of your triggers is hormones. If this is the case, I would recommend being evaluted for a hormonal imbalance to see which birth control pill would benefit you the most.

    Like the others said, loose-fitting, natural fabrics only. Also, if you're using anti-perspirant, stop, right now. Seriously. Deodorant only. I use Sydelle's sensitive skin deodorant, other HSers have sworn by Crystal Deodorant, and I know Doterra makes a natural deodorant as well. Just keep trying everything until you find one that works, if you haven't already.

    If you can't find a trigger, there are other things you can try. I am a big believer in trial and error. And if it won't hurt you, try it.

    A lot of people with HS take a combination of Turmeric and Zinc. Turmeric (or curcumin) is a natural anti-inflammatory, in fact, my mother worked as a nurse in a cardiologist's office for years and they would recommend Turmeric supplements to their patients to help thin the blood. Zinc is great for the immune system and helps it figure out what it's supposed to be doing. You do need to take turmeric with protein to help the absorption rate and it can take a few months before you really start to see results. I tried it before I did my diet and had mixed results. If my diet hadn't worked, I'd probably still be taking it though.

    Biologics, like Humira, have had some success in reducing HS outbreaks and their severity. I'm sure the specialists you saw probably talked to you about this. I'd chalk this one up to a last resort. If you can't find your trigger, and there's literally nothing else for you to try besides surgery, I'd recommend sitting down with your doctor getting all the information you can, and then make a decision as to whether or not the benefits outweight the risks. Sometimes they do.

    Everyone reacts to treatment differently, so you're going to have to keep trying different things to find something that works. It is absolutely possible to put your HS into remission, do not give up hope. If you don't have one already, find a doctor that not only understands what you're going through with HS, but is willing to listen and keep an open-mind about treatments. It took me years to find a doctor that supported me, you should've seen the look on my old dermatologist's face when I told him that I wanted to try an elimination diet. A diet. This is also the guy that recommended I take bleach baths twice a week, shot me up with a steroid injection in my arms and groin (all I can say is ouch) three times a year, cut into me with a scalpel more times than I can count, gave me creams to use that were known to cause problems worse than HS, ie liver damage and death. And his final recommendation to me was to have a procedure that would remove the sweat glands in my arms, groin and buttocks entirely and leave me in excruciating pain for months. Yet for some reason he balked at the idea of a diet. Still can't believe he was looking at me like I was the weirdo.

    When I went to see my current GP, he had no idea what HS was at first, but he did confirm that there is a link between autoimmune diseases and our diets. He made sure I saw a nutritionist to ensure that I would get all the vitamins and minerals I needed during the duration of the diet. He did tell me, he had no idea if the diet would work, but that he was open to anything that would make me feel better as long as it didn't cause any damage in the process. First doctor that has ever told me that.

    This forum is great for support, but it would be even better if you had a support system in your own personal life as well. Is there a family member, or a friend you can talk to about this? Someone you can call when you're having a really bad HS day and just need to vent? It can be hard to tell people about HS, but having a support system is so important in dealing with this disease.

     

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  • Posted

    I understand your pain. I have had the worst three years of my life.

    But, in the last two months, I am abscess-free!!!

    Three things have changed:

    1.) prednisone. Steroid wean has seemingly eradicated the issue. I understand your desire to stay pill-free, as we all know that the cycle of antibiotics make the problem way worse and drive you further into depression. I'm on 7.5 mg this week, dropping at a 2.5 mg rate each week. I'm pretty sure that stopping antibiotics use and treating with steroid is the big key factor, but ill share the other two things I've done differently...

    2.) follow Autoimmune Protocol for at least a month. The diet is ridiculously strict, and it IS a massive lifestyle change, but I'm 40 lbs lighter and I have never felt healthier in my life. Cutting nightshades and other inflammatory foods has been amazing, and I can truly grasp doing this for my whole life now that I feel the benefits.

    3.) 3 10 min warm water bleach baths a week with 1/2 cup bleach. Not hot, and not too long. I was overdoing the bleach forever, further worsening my eczema.

    I'm not a doctor and these are just my experiences, not advice, but I truly hope you see some relief!!

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    • Posted

      Hi Alex, thank you for your reply and sharing your experiences. The autoimmune protocol diet seems to be the most common thing I am reading has brought relief to people and sent their HS into remission. I am reading a bunch of medical journals about how to switch over to a paleo diet (also adding no night shades). I've never been good about a diet. I love my food. But I think the reward will be two fold:

      HS into remission and weight loss. Congrats on losing 40 lbs and feeling great! That's the main goal is that we have the best quality of life.

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  • Posted

    When ever I'm in extreme pain I use dermoplast under armpits, it eases the pain burns at first, but us with HS know which pain is worse, also I've noticed wearing my shirts inside out while at home decreases the rubbing and flare-ups I'm ordering emuaid this week see if that helps I've been better last 2 weeks until I stressed over a friends passing and I got a big one that burst while at work, ran to bathroom to wash the stench. Wish there was more research on treatment for this.
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  • Posted

    My name is Olivia 26 years old Stage 111 HS this is my story

    I been suffering from HS since I was 21 it first started with a little pimple in the middle of my chest I figured it was a pimple but I was so wrong a few weeks later it got bigger it would drain go away come back pain was unbearable couldn't wear certain tops and I couldn't hold my son at the age of 8 months old later cause I didn't know what to do or who to tell my biggest fear was going to be a roomor to everyone I have staph I knew it was not but I kept it a secret

    Then slowly it started to spread under both my arms tunnels both sides of inner groines my pelvic area and my butt

    I couldn't walk I could not sit I was in critical condition running high fevers my white blood cell count was low my heart was racing the only thing that helped with pain was Vicodin I was living off of Vicodin to take a shower was a big job the water hitting my open wounds to go to the bathroom untill I got fed up and went to the ER to get some of them drained

    Before I knew it they told me I'm so critical with infection I'm in a life threatening situation they have to do emergency surgery on me

    I stood 30 days in the hospital I had skin graphs done and removed the old infected tissue I had surgery done in about 15 places

    It's been 2 years now I'm not going to lie I had 4 skin graphs and only 2 was a success on my chest and underarm no flares but I am now back in critical condition BTW the hospital diagnosed me with HS

    So I've been hospitalized 2 times in one month I've been on every antibiotic I've tried every remedy body washes lose clothing it don't matter it will come

    I have a last resort witch is Humira I been hearing a lot about it and I know 2 people that's on it and they tell me it's a miracle medicine

    I asked my dr if there is something I'm doing wrong he told me no this is what your body wants to produce all we can do is control it

    Fat/skinny,smoker or not,no special diet shower or don't sweat or don't sweat it don't make a difference

    Good luck to you I advise you to take care of your problem don't Do like i did in sick critical condition stuck in the bed suffering there is help out there you ha e to be open though everybody body is different

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  • Posted

    Just found this site today & this is my first post! You're story really struck me as it reminded me so much of mine! I had my first symptoms of HS in high school but wasn't diagnosed until my early 20s. I actually diagnosed myself and my doctor concurred. I had a pilonidal cyst removed when I was 19 and at 24 I had a 7lb benign ovarian tumor removed, along with an ovary. So I know exactly what you mean by a gnarly scar. I'm 36 now but it still itches, especially around my belly button.

    I don't have a dermatologist, just see my GP for my HS. If I had to guess I would say I'm stage 2. My armpits and bikini line are my main problem areas, but have flare ups around my bra strap area fairly regularly. Right now I'm on a daily antibiotic, pain meds & anti-inflammatory (although I've had to decrease the frequency as I was recently diagnosed with ulcerative colitis - good times, there's another support group I'll have to find. Lol). I had been using hibiclens but it didn't seem to do anything so I just started using dial antibacterial soap. Right now I use emu oil soap. It's been a couple of months using that & I still have moderate swelling and pain but I haven't had any doozies (fingers crossed).

    It's probably something only another HS person can understand, but I consider days with moderate discomfort "good days". It's been 10 years since HS has become a daily factor in my life. Waking up, the first thing I do is assess how bad today is gonna suck, in terms of my HS. But I have come to accept it as just part of who I am and I'll take it as it comes, one day at a time. I know some of those days will be very rough, but I'll get thru it.

    Glad I found this page, and a couple of others. Its already helped knowing I'm not alone, and that there are so many stories similar to mine.

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    • Posted

      Hi! I check myself first thing too. I have drainage every day. Sometimes a little pus but often times a blood/fluid mixture. I haven't always had to deal with it 24/7. Dies anyone else have this problem? I've had antibiotics twice in the past 4 months but still having drainage.
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    • Posted

      Tired of the pain after many years just brought some cortisone 10 and have not been in pain all day after many years one day of gardening pain free I could even lift my arms . hopefully it's long term but one day of pain free is like heaven n feeling back to old days
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