Tips for HS sufferers like me

Posted , 12 users are following.

Hi all, fortunately my form of HS seems to be mild in comparison to most but I thought that I would share with you my routine and tips, in the hope that I can help other sufferers.

I was diagnosed 3 years ago after having an abscess in my groin removed. My doctors were clueless after many repeat visits and finally I was seen by a dermatologist who recognised the condition.

For anyone curious of the symptoms, I would liken HS to very deeply embedded spots, with no head to squeeze. Peas sized, sore and red/purple in colour. DO NOT ATTEMPS TO POP. This only irritates the boil.

I have been prescribe many different types of antibiotics but the only thing that has worked for me is Erythromycin. 

I exfoliate regularly to prevent from in growing hairs, which can cause my flair ups. Please don't exfoliate vigorously if you have a current flair up, as this may irritate it more. 

Most importantly, I have switched to alcohol and perfume free toiletries, such as Vaseline deodorant and Sanex shower gel and bath bubbles. 

Stress is a stimulant for HS so try and eliminate the stresses in your life, especially if you are having a flair up.

I also found that wearing the wrong underwear can cause flair up. Make sure that you wearing comfortable underwear that doesn't chafe or rub.

I strongly believe that these simple changes have kept my condition at bay and I hope that my advice can help others.

Vicky smile

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  • Posted

    Hi Victoria.

    I have stage three HS and have suffered with this for thirty years. I'm allergic to penicillin and have been given Erythromycin hundreds of times for 6 months or more. All these tablets do for me is bring out more of the abcesses. I'm am sick and tired of being cut to peices. I am not over weight and I don't smoke and I'm quite sure it's nothing to do with menstral cycle. I had a full abdominal hysterectomy with everything including my ovaries removed and still have several breakouts at a time. So I'm quiet sure it's not hormonal. My friends husband had stage 2 and died after having one burst inside is rectum he was 35. It's an awful disease to put up with but I have now found a cream that not only gives relief after applying but if you put some on an adhesive dressing and cover the breakout it either bursts or goes away within a day or two. This is the only thing that works for me after having several different antibiotics and creams. I've also tried food elimination. I am allergic to wheat and yeast and have been for many years so I avoid all foods etc with these in. I found that tomatoes and red peppers and all beans were also toxic for me to eat after re introduction to my diet. I soon took them back out after getting several lumps appear after eating them. The cream I use is around 42 pounds on amazon and I'm never without it. This is called Emuaid max strength it all natural products in the cream and works wonders for me. Look in to reading the book with regards to HS written by a sufferer it's called the hidden plague. Also the paleo diet. Best of luck with your HS. Regards Karen.

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  • Posted

    Incorporate organic raw apple cider vinegar and turmeric capsules, powder & root into your daily diet.

    No potatoes, tomatoes or peppers. (Nightshades)

    Consider whether you are dairy or gluten intolerant.

    Ensure to rinse skin every time you sweat -

    Tea tree, dettol & Epsom salt baths DAILY, make sure you rinse off. Don't apply any sort of creams to problem areas at all -

    Instead apply Sudocrem mixed with tea tree oil to affected areas.

    If drainage occurs, pull skin taught and try to apply pressure to skin just next to absess in order to drain (with clean hands) & apply the sudocrem & tea tree oil.

    This is all information I learned through trial & error, & a good few years of research.

    I think HS is the body's response to what we ingest & what we intake, whether it be what we eat, drink, smoke or even breathe in. (Pollution)

    So be mindful of these things, & research some detox's & cleanses to naturally rid the body of any heavy metal toxicity..

    Happy HS awareness week!

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  • Posted

    Also it's helpful to use heat to draw out the absesses (hot baths or hot water bottles of pressure can be applied over clothes)

    Or use cold things to bring the swelling down, which I don't personally so but some find very helpful.

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  • Posted

    Hi

    I've been suffering from HS for years. I just had a cyst the size of

    A softball on my bikini line burst and needed medical treatment.

    I have not seen a specialist in hs yet because 90% of derms want

    To prescribe acne treatment medications which only aggravate the

    area, I have it in armpits as well. Worse when period rolls around.

    I will say the paleo diet helped but it's a lifestyle change that is

    difficult to adapt to. My latest bout involved injectable antibiotics

    with a doctor helping draining the cyst. The other thing that has

    helped me is salt baths and hot compresses infused with a home

    remedy of tea tree oil, olive oil, aloe Vera gel, a zinc tablet and

    witch hazel, all diluted in water and microwave for 1:00 or more

    depending on the heat you can stand. It worked to bring it to a

    Head and burst with 3 days, now after 2 days of antibiotic injections

    I am about to start 10 days on augmentin. I was on doxycycline

    for a previous battle which helped reduce the size. I am still on a

    quest to eliminate the buggers but I have been told it's hereditary

    and I do have cousins with the same problem. I wish I could give

    you a cure but I cant. It's hormonal and hereditary but I would never

    suggest messing with your hormones. I almost wonder though if

    getting our hormones tested for irregularities might be an option. I

    will do a follow up after 10 days to see how they are doing after

    this antibiotic round and I am also wondering about laser hair

    removal, any suggestions? This is a sucky thing to endure....

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    • Posted

      My dermatologist and I tested my hormones years ago and thought it could be a cause but then she researched and found that you immune system changes with your hormones. HS is an autoimmune condition so that's why some people think it has to do with hormones. I found remission by cutting nightshades and peanuts and coconut products. Those are my food sensitivities. Good luck! You can search for your food sensitivities and not necessarily go full paleo.
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  • Posted

    Thanks for the info Crystal. I have done a partial elimination diet and

    did find that peppers might be a culprit also paprika (unfortunately I

    LOVE both) also tomatoes. But they never fully went away, and still

    got cysts just not as big. When I did the paleo diet it eliminated

    Grains which might be my source because I will say this, that

    eliminating grains helped me loose weight and the cysts decreased

    way more dramatically and the weight I lost was probably just water

    it was about 10 pounds. My issue was pasta.....love it, pasta is

    another weakness, and ultimately I failed to stay on the diet because

    of my weaknesses. I have been on augmentin for about 3 days and

    It's doing a number on my poor intestines, so I started a probbiotic

    yesterday to counteract the destruction. So I guess once my

    antibiotic stint is over I will go back on an elimination diet. Again

    see if grains are my source (it will be difficult) but necessary.

    Just so you all know I do not have celiac or chrones, maybe just

    A sensitivity.

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    • Posted

      It took my cysts a good 6 weeks to go away completely. Mine were tunneled and very deep but they seemed to work their way out after I stopped eating my triggers. Like my body was releasing them? The day I stopped eating nightshades though, my inflammation went down. Also remember that Paprika is in so many foods! Mayo and mustard, sometimes it's included in "natural flavors", etc. I've found 2 kinds of mayo that has lemon juice instead of paprika so I buy those or make my own. It's frustrating and sad not to eat foods we love (especially for people who like to cook and eat) but when I went on a bike ride with my family for the first time in years-it was totally worth it!
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  • Posted

    What's weird is this literally only started in my mid 20's and always ate

    pasta and nightshades. Grew up on casseroles or all sorts and an

    Italian mother. I wonder if maybe my immune system crashed one

    day and boom HS happened. Something triggered it....it's bizarre.

    I do think nightshades and/or grains are a source but different for

    each person. One might tolerate potatoes but not tomatoes, others

    it's grains, and maybe some it's all of the above. I agree that it's a

    autoimmune disease. But I really do not want to be on meds for the

    rest of my life.

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  • Posted

    Hi,

    my HS was hormonal as it always flared 3 days before my period. I was subseqently dx with PCOS  at 45 and given drugs for this which also prevented further flares. However, I was never convinced with the PCOS dx and it turned out I was insuline resistant instead. High levels of insuline has been found to cause androgen production which has been found to intiate the flares.

    http://www.eblue.org/article/S0190-9622(15)01990-8/abstract

    I have been working on a low slow carb diet to reduce the insuline and as a conseqence I have been able to come off all drugs for HS with the exception of curcumin which I only take occassionally when I think a flare is occuring.  For those who find the palo diet hard you may get the same benefit by going down the low slow carb route, at the very least it will reduce your likelyhood of getting type two diabeties/ metabloic syndrome. Another study also found a link between vit D and H.S. I have been prescribed a monthly supplement and it may also be of help. 

    http://www.ncbi.nlm.nih.gov/pubmed/25512084

    Best wishes to everyone out there.

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    • Posted

      Interesting!!!!!!! I thank you for these helpful articles. I live in the northeast and was once diagnosed as D defficient, hence lack of a lot of sunlight and the fact I work in an office with ultra violet light and not the out doors type person except for spring summertime. Ironically most of my flare ups happen in the winter and burst and try to heal in the spring/summer when I am outdoors more. I have been trying to sit outdoors in the sun on my lunch breaks and feel so much better when I do this, even if it's 20 minutes I feel renewed. And my cysts have been trying to heal, they reduce in size. What is the strength of vitamin D you are on? Also I have heard of turmeric/curcimin combo, is it straight up curcimin or a combo of the two, and what maker/strength do you take? I have also done the paleo diet in the past with decent results which emilimates carbs and dairy, however I did it for 2 months and fell off the wagon because of me just loving to cook and my love of carb rich foods. I found that just in this past week as I had a huge cyst that I needed medical attention for is finally healing and guess what....I went on a bland diet, consisting of chicken and fruits like bananas and apples because the antibiotic I was on killed my intestines, has helped. By the way....if a doctor ever trys to prescribe Augmentin, run, run fast! My augmentin experience lead me back to the doctors office because it created extreme diarreah, to the point I was tested for CDIFF (colitis induced by antiobiotics), they switched me to doxycycline with probiotic supplement and feeling so much better after 3 days and intestines getting back to normal. Just go's to show some doctors just have no clue what HS is or really how to treat it. The doctor I initially saw was a nurse practitioner with minimal experience in skin issues but in an emergency I opted to see her at the beginning, bad mistake.
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    • Posted

      Hi, My new doctor has not come across HS before ( i think) and she was the one who prescribed the Vit D. When I told her it seemed to be helping she told me she is a fan of it and she prescribes it to everyone. So there was no great knowledge behind  that prescription. I have asked for my vit D levels to be checked  as I live in a sunny country. The dose is 1.25mg/ month. But if you ask the others they will be give you a range of daily/weekly doses. I think it is a common prescription for autoimmunes.

      The curcumin I take is a complex of curcumin and bioPerine (black pepper) plus a few other stuff like ginger. The black pepper helps the curcumin to be absorbed - it needs to be mixed with something. I randomly picked the product I am using and have been using that one ever since. Some people prefer eating/drinking tumeric, but  I am scared off by the tumeric stain (even  the pills stain my hand !) Each pill is approx 600mg of curcumin and I think the normal daily  maximum dosage recommended is about 2000mg. I only take it if I  feel the niggle of a flare, usually 1 but sometimes 2 depending on the size of the niggle  My HS took off after  taking antibiotics and ibuphine 24/7  max dosage for a month and I like you think the drugs damaged my digestive system. I also went on to probiotics and started taking up to 4 curcumin a day as an alternative to pain killers. I had no problems at 2400mg/day. If you google curcumin you will find lots of helpful advice.

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    • Posted

      What is the name of the curcumin complex your taking ? And would you be kind enough to tell me exactly what and how much you took everything in order to escape from the HS ?
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    • Posted

      Hi, the curcumin is by goodhealth Tumeric 15800 complex. I only use the tumeric when I feel a flare starting(one cap - 600mg) which is effective.  I have used upto four a day during an absess for the anti inflamatory/ pain killer properties which is helpful. I have not found that curcumin is sufficent to cure an abcess or run of abcesses. I discovered that I was insuline resistant (insuline is thought to be a trigger for inflamation) and I have worked hard  to reverse this through lifestye changes - low carbs, excersise, some weight loss and  de-stressing.  My insuline levels and HS has dropped to the point that I no longer have flares, can eat small amonts of nightshades and I can nock the odd niggle on the head with curcumin.  Love that curcumin.

      Best wishes

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