I've waited 68 years to get a disease I never heard of!

[patmc1]

Hi I'm new to this site but I've been a member of HealthUnlocked --COPD and Asthma for a few years.

Over the years and rather mild and sporadically, I have had small sore imbedded lumps in my armpits and groin. They just went away and I thought they were irritated lymph glands.

Then about 5 weeks ago I developed a very sore golf ball size lump that I thought was a boil. I applied hot compresses to the area but it wouldn't come to a head. This went on days and I confess the compress went from hot to boiling . Finally it appeared to partly pop and pus and blood came out in 3 areas . It looked ugly and weirdly scarred and ridged. Then the next morning as I went to clean it off again and apply Neosporin ---I had a series of smaller bumps/big pimples trailing all along my side and another big spot swelling.

Of course not being able to seek medical help with the pandemic ( and with mild emphysema and moderate asthma) I consulted Dr. Google. My underarm looked like most of the HS pictures. But the articles often mentioned that this was usually found between the ages of 18 to 39 and often vanished after menopause. I hate to say how long ago that was for me.

But this isn't the first time I've had an auto immune disease. I had eczema at 6 months , rheumatic fever (4 years old to 11), and also have Hashimoto disease.

I've been trying to figure out what triggered this. I have gained weight after shoulder surgery this December (I fell and ripped the rotator cuffs in both arms). So I was attempting to correct this and 6 weeks ago went on Keto/Atkins. Yes no sugar, bread, etc. but I was eating a ton of bell peppers (nightshade family) and also chicken (I am allergic to it but when on the blood tests tilapia was 100+ and white meat chicken .45 I figured it was ok)

I immediately cut out chicken and peppers , and am also looking online for tips--I ordered and am using almost every vitamin, antibiotic wash, and soothing balm that seemed helpful. I am now sitting here with a tennis ball boil that just partly popped and two more coming. Still only on the one side but I'm so nervous.

Sorry for the long post but if anyone has any input, suggestions or heard of this in my age group please respond.

And let me say----I thought 68 years of atopic dermatitis was bad but this condition is far more horrid.

[allanah]

Call your gp! There is some antibiotic creams and meds you can try ! Xx

[patmc1 in reply to allanah]

Thank you

[allanah in reply to patmc1]

Just read above, I put a quick sharp reply there didnt I!!! No idea why!

I hope you get it sorted and controlled. There are meds and treatment that could ease it for you so yes , give the GP a call x feel better soon xx

[Arya97]

Oh no. It sounds like your body is experiencing quite a lot of stress and inflammation. And then HS arrives on top My HS got to its worst when i was 26 - i've also done a reintroduction diet. I'm 29 now and nightshades, dairy, onions and garlic and legumes are still my worst triggers. Hopefully the GP will refer you to the dermatologist right away. By the time I saw a dermatologist i was 6 months into the reintroduction diet and the antibiotics didn't really do much by that point. I'd read the internet/science journals back to front and antibiotics have a low efficacy rate, usually patients end up going from one to another. Finally more science is starting to view HS as an autoinflammatory disease which will hopefully open up more avenues for treatment. They gave me clyndamycin tablets and a topical clyndamycin. Hopefully these types of antibiotics are effective for you.

For healing / trying to reduce inflammation

- nappy rash cream/zinc oxide cream and where you can leave them uncovered as often as you can as you want them to dry out when possible. For a while id get home from work, shower and put the cream on and sit in one place. get some dressings for when you're out and about. I also took zinc supplements during that time but you shouldn't take it for too long. If possible make the doctor to do a full blood test of all vitamins and minerals - i think you should request this anyway because of you've changed your diet out of desperation to try to heal yourself and should check you're getting all the nutrients you need.

- I take one or two capsules of turmeric with black pepper every day for 3 years now. Fully recommend. People expect to see some difference straight away and dash them when they don't. But i guess thats a common misconception people have about how you build and maintain your immune system.

- hibiscrub wash can be purchased at boots, ideally try to get a big bottle on prescription.

- try warm baths with salt, soak for at least 30 minutes. i remember how hot compresses just make the area more hot and that's not comfortable.

- the herb that changed my life is moringa. the nutiva brand from holland and barrett. maximum one teaspoon in a smoothie or plain with water (like a shot) everyday. It really made my ibs better, helps regulate the adrenal system and made my reactions to foods i can't tolerate less intense (allowing me to eat foods that i shouldn't have too regular because inflammation doesn't build up within the body so quickly). i've told other friends about this and their reactions made me realise its not just in my head that it has such positive effects.

I already had pretty bad body dysmorphia and mental health before my HS got so bad i could identify it as HS. I'd been going to doctors since my teens about boils. So i've tried everything out there and now I'm able to manage the conditions because of finding out what does and doesn't work for me.

All bodies are different. Be patient with yourself. I hope you have a support network or someone you can tell about it. It took me ages because of the shame I had about my body. And if not this group is here. Good luck, stay strong! Amazing that you're actively trying to help yourself than accept and continue in pain the way others do.

[patmc1 in reply to Arya97]

Thank you for your informative and supportive response. I'm sure most people who have had to deal with this years are not surprisingly saying ""only have it now ---how lucky" And I don't blame them.

I have struggled with atopic dermatitis since I was 6 months old (my Mom wrapped me in bandages like a mummy---and once secured gloves with rubber bands around my wrists--so I couldn't scratch---luckily she didn't completely cut off my circulation!). And I was teased all through school (when I wasn't in the hospital with rheumatic fever) for the sores on my face, neck, crock of my arms and back of the legs. And since I was always scratching and opening wounds and people with eczema carry more staph on their skins --I had quite a few bouts with infections and sties.

But HS is so much worse. With eczema

I was lucky to sometimes be in "remission" .And although you get so tired of itching it was never that painful. And it did strangely go away for almost 2 years until a few months ago.

And yes my stress has increased. I've been taking care of my elderly father who was pretty good at 93 and the last 2 years have been a medical nightmare. Then while caring for him I took a bad fall , ripped both my rotator cuffs, had surgery on one ---it takes a full year to heal, and for the first month it is kept immobile. I was good brushing my teeth but pulling up my pants with one hand was comedic.

You gave me some wonderful advice and suggestions.

Some things I'm already doing: I have taken turmeric for years and other vitamins and supplements(4 years ago I went to a holistic doctor for my eczema and she did blood tests and prescribed D3, krill oil, turmeric and B12).

I am washing with hibiscrub.

I can't take any kind of bath -it's too drying -and has to be tepid.

I am putting on Neosporin (antibiotic cream) but I like your suggestion of a zinc ointment .

But I'm really interested in moringa. I would love to eventually eat bell peppers again (maybe not so much!!).

And thank you. I do indeed have a support system ----my best friend for 55 years. She's the only one I could tell. When I described what I had she also researched the internet as I did. She made suggestions, but never in a million years would she be judgmental or even repulsed . I also call her when taking care of an occasionally cranky 95 year old gent gets to be too much.

Thank you again and I wish for healing and understanding for both of us.

[LadyJoro]

Antibiotics and anti bacterial steroid creams can help the active areas but the only way to get them under control long term is to address the underlying cause - the immune system dysfunction. That usually means biological medications like Adalimumab

[patmc1 in reply to LadyJoro]

Thank you