Hidradenitis Suppurativa Support Group Activity

  • I just learned what has been wrong with me for the past 7 years.I have had a place come up under my right breast every few months for the last 7 years and would go to er when the pain was so bad i couldn’t move.The other night i had to go again this time a woman dr lanced it and drained it and she finally gave me a diagnosis of hs.She gave me two…[Read more]

  • RS posted an update 1 week, 6 days ago

    I am so glad I just happened to hear a commercial about HS on Pandora! I have known the term for years (a non-dermatologist MD once suggested that is probably what it was in my early teens) though never been officially diagnosed.. As soon as I heard the commercial, I visited the website advertised and of course had every symptom and have been…[Read more]

  • I am starting my diet today. Not a happy camper about it. lol

  • Hey everyone;
    So I guess its time I start taking my doctors recommendations seriously. The recommended action plan for me is:

    Dietary Interventions:
    Avoid tobacco products
    Consider trial of avoidance of dairy products
    (The websites http://www.acnemilk.com, the paleodiet.com, and http://www.godairyfree.org are helpful for details)<—these are sites he…[Read more]

  • So I made the appointment with my GM, Who took one look at my arm, started me back on Doxycycline, and referred me to my surgeon for a consult. Okay so that went exactly how I figured it would.
    I got into my consult yesterday, and I was nervous to begin with, but I don’t know why. Anyways he came in and took a look, pressed all over my armpit…[Read more]

    • I know it seems like a lot but it’s pretty standard and the best results are usually achieved by changing or addressing several possible contributing factors. I take a daily antibiotic (doxycycline) and also spironalactone. We use anti bacterial soaps but I like to alternate them on occasion because the good bacteria on the skin is important. The…[Read more]

      • And yes being on Doxycycline you will burn quicker when you are in the sun. I found that out the hard way but I have a tendency to avoid direct sunlight for a couple reasons. I sweat profusely when I am overheated mainly from my scalp area and also I have tattoos so I naturally avoid the sun and I have never enjoyed sunbathing or (cooking) that’s…[Read more]

  • Shavaughn Ulven posted an update 4 weeks ago

    So in another episode of Shavaughns silly armpit, I bring you MY SILLY ARMPIT! Once again, Its acting up. This would be the left armpit. The troublesome one. (I always knew it was trouble!) You see, I had surgery on it a year ago, It got infected, never healed shut. My doctor set me up for another string of surgeries to get it fixed, But my…[Read more]

  • (AMAZON.COM PROMO) If you get both volume 1 and 2 on Amazon FREE Shipping is available. I thought they were cheaper on our own site but I was mistaken with this promotion they are having. Nothing under our control, but pretty cool I think. I don’t think over 2 dozen sets have been sold. I need to get copies still sent out to all the patients who…[Read more]

  • Ron Bercume posted an update 1 month ago

    It has been suggested that the clear symptomatology (painful lesions recognized by patients as boils), the specific areas affected, and the recurrence/chronicity of the lesions are sufficient for reliable, self-reported diagnosis, but this approach requires additional validation.

    Different clinical presentations:

    In 2013, Canoui-Poitrine et al14…[Read more]

  • Ron Bercume posted an update 1 month ago

    “I WILL NOT HIDE” #HidradenitisSuppurativa (HS) Patient Personal Stories “Volume 1” | #HSSUPPORT

    [Read more]

  • Sandi Wyman posted an update 1 month ago

    Woohoo! Another daily antibiotic started Friday and a new spot in a new area today! Yay.

  • I saw my dermatologist Wed. Since Humria didn’t work for me he doesn’t have a clue what to try next. Per his recommendation, I have an appointment setup for March 1st with a surgeon. I’ve had HS for 25 years. I wasn’t diagnosed until 5 years ago when I had to have my first surgery. I also have dilated cardiomyopathy which makes treating my HS…[Read more]

    • Such a strong Woman!! Gentle hugs to you and all the best for your coming surgeon appointment too, I really hope you find some relief soon <3

      • Sending you a huge hug. I truly hope that you get the help that you need. We are always here for you 💜

        • Thanks! My husband’s job had us move 1500 miles from our family and friends 7 years ago. Due to my health I haven’t been able to get out and meet new people. The internet is my lifeline. HS has trapped me in my home and this life can be extremely lonely. Those of us dealing with HS need all the encouragement as we can get.

      • Thanks!

    • So sorry @kaye620

  • Warm welcomes everyone!

  • Love can exist within suffering. It will be okay, if we make it okay.

  • Good morning …. Thank u, for allowing me into the group. I also have HS and Fibro along with a platheria of other annoying things. However since last May has been a real trail with HS. During this time I have seen 9 doctors and been flown to specialist. Of course we all know there is no cure. They now have turned me into a experiment.
    I…[Read more]

    • Have you seen any significant changes with the diet or meds?

      • Yes! Between the new med and diet
        I’m out of flairs which is first time since May 2016
        It’s sooooo nice

    • Warm welcomes @jmelzer24! Can I ask where you get care at? I am curious to learn more about hormone replacement studies being undertaken.

      • My primary physician in reno nv ironically , however he is now being directed by a specialist that was brought in and is working with him from UC Davis. Nucular Medicine is her field.
        I opted for the diabetes choice and am taking metaformin. It has been many weeks now and I can truthfully say I am clear of my sores. Which is first time since May…[Read more]

  • Thanks Lindsay for starting this group! I’ve tried a lot of different diets to help with my flare ups. I’ve recently discovered that coconut oil causes severe flare ups for me. I can tolerate a little but if I use a teaspoon everyday for a week, I get a flare up a few days down the road. I’ve tried the Paleo, GAPS and whole 30 Diet along with a…[Read more]

  • I\’m trying to use the site more,been slacking lately.Hope everyone is well

  • When I’m in pain — physical or emotional — the kindest thing I can do for myself is…REST! I dont know why I have such a hard time doing just that, But I swear, Asking me to rest is like asking me to pull my own teeth out. I hate it! HATE! with a passion! I have no idea why, but I just cant seem to take “Me” time. I mean yeah I have 2 kids wh…[Read more]

    • I have the same problem as in my mind I always feel I need to be doing something (physically or on the go). Maybe for us it’s a matter of looking at it as “rest” but should be looked at as doing something different that can take away from the daily physical and emotional grind. After all we are still “doing” while we relax and watch a movie it’s…[Read more]

  • This year Melissa has secured a spot in Springfield Missouri’s Saint Patrick’s Day Parade to walk for Hidradenitis Suppurativa Awareness. If you are a HS Warrior, family member or friend please join Melissa and others in helping to raise awareness for HS.

    [Read more]

  • I have often wondered why so many patients with Hidradenitis Suppurativa have also been diagnosed with Fibromyalgia. My question now is were you diagnosed with Fibromyalgia before or after Hidradenitis Suppurativa? I myself have had HS since the age of 9. However, I was not officially diagnosed until the age of 38. Approximately a year later I was…[Read more]

    • I’ve often wondered the same thing. But, for me, it brings up a whole other list of questions. Things like is it diabetic neuropathy or HS or fibro? The biggest obstacle I find for me is that anytime I have pain that is “unusual” it instantly gets blamed on my diabetes and then nothing is done. It can get incredibly frustrating.

      • I am kind of having the opposite problem Michelle experiencing pain and having a hard time determining whether or not it is Fibro or other but I agree it is very frustrating.

    • My diagnosis was after being diagnosed with HS and Spondyloarthropies. It also seems that all three diagnosed are progressively getting worse as I get older. I am not sure if this is true for all.

      • It seems to me for most HS presents itself first and then other conditions are to follow such as Fibromyalgia but I am sure this is not the case with everyone but it does seem to be a majority of us.

    • I have had HS since I was 16 but was not given a diagnosis until I was 28 . The doctors had no clue what it was for all those years then at 38 was diagnosed with Fibro and now at 57 it seems everybody has Fibro , And (thanks to social media) now see so many have HS at least we know we are not alone 🙂

  • A wealth of research over the past 2 decades has expanded our understanding of the impact of early-life adversity on physiological function and, consequently, health and wellbeing in later life. Early-life adversity increases the risk of developing a number of disorders, such as chronic pain, fibromyalgia, and irritable bowel…[Read more]

    • One of the biggest adversities I ever dealt with was being labeled a hypochondriac by my doctors when I was between 11 and 12. I was so sick, so often, they just decided I was faking it. Even when the test results showed infections or other problems. Since they had no answers, it was easier to just push me aside. It took me years to get a doctor…[Read more]

      • I understand, I had to tell my doctor several times that I was experiencing pain without cause…meaning I could not explain it. I saw him three times before he sent me to a rheumatologist who diagnosed me with Fibromyalgia and it was also discovered I was severely vitamin D difficient.

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