Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
I'm so sorry you're going through this. I know how you feel. I used to wake up nearly every morning crying when I realized I really did have this horrid disease in my armpits. The smell and how it destroyed a once normal armpit hurt me every day. Have you considered surgery? I know it seems like nothing will work but i can say i am pain free and confident like i used to be since I had surgery. if you have any questions, pls email me. Hang in there. You'll pull through.
Corn starch is an absorbant. Get powder than contains corn starch, or use it straight. I also have found, it sounds strange but it helps in the folds, especially with heat rashes...vaginal cream for yeast infections.
You will find lancing your own boils with a sterilized needle is a lot less painful, than having a Dr. Or ER to do it. Once e pressure is off e pain calm down. Really hot cloths will help bring it to a head and drain.
Please calm down and relax I know it is not what you want to hear, but anxiety causes some reactions for mor break out. I suggest you see a doctor and have some blood work ups. One is an ANA teat. This will test you for (anti nuclear antibodies). This is an auto immune test. A lot of people are positive it is not contagious, you were born with it. And puberty started it.
You will survive this, and you will find there are triggers that cause more actions, it could be a food, drink, stress...etc. I wish I could give you a miracle cure, but I cannot, and unless there are more studies done, there are a lot of us that suffer the indignity every day and keep doing our own investigations as to what causes the flare ups.
You have come to a very good site, the people here are friendly, and have good information. Don't be shy about asking,talking or even venting after a bad day.
Man, my heart just broke when I read your post! I truly hope you have someone that can give you a hug dude.
You need to get your butt to a doctor. When I read through post I kind of consider myself lucky. My disease has been mainly on my inner thighs and my armpits. Sometimes the pain of those two areas was more than I could handle. The thought of being riddle with this all over your body, is so sad for me to hear. You need to get to a doctor!
I know that is easy for me to say, I'm Canadian and access to doctors here is easy, you need to find away.
First, treat your pain. Narcotics are a slippery slope, but, explain how much pain you are in and a doctor will help.
Second, treat the disease, start on antibiotics. What has worked for me is not typical antibiotics that treat infection but rather meds that treat acne. Talk to your doc about Doxy, minocycline, Accutane.
Third, get referred to a surgeon as HSchich suggest. Most if not all surgeon have encountered our disease and have more knowledge than GP's that treat colds every day.
Take action tt8, see a doctor. I'm sending out some love to you in the universe. I truly hope it finds you!
Sometimes just being able to come out here and let out the pain and suffering through typed words help. Venting is amazing under such circumstances. I was born with this disease, But I've just been recently diagnosed with it about a month ago. I've felt better since finding this site, just for the power of expression.
I know what i'm saying is not enough to dull the pain, but I just had to come say hi to you.
Just know that you've made it this far because you are stronger then you might give yourself credit for!!
Right now i'm on some Homeopathic medicine trying to clear out my system of toxins and drinking liquid chlorophyll which tastes rather minty. Thanks for all the kind words guys i'm just so agitated. I can deal with the boils just fine honestly it's these freaking chronic "sores" that are so painful.
OK, so I read your post a few days ago, and it made me feel so bad for you!!. Everybody who replied has given you excellent recommendations, but I think you may have to do some more to lower your toxin load and build your immunities back up.
I'm so sorry you are dealing with this and are feeling so miserable!! High School is hard enough!
Are you wearing cotton clothes that can be bleached? Underwear and T-shirts and cotton sweat pants can be bleached to kill the staph and not re-spread it to more areas of your body. No elastic or synthetics, those materials irritate the boils.
I would change your sheets every day, for a couple of weeks, every 2 days at most, and bleach those, too. Same with towels, everyday, clean bleached towel. In order to get the infection under control, do this for a couple of weeks at least, then as you get flares, you can just change and bleach more often during the flares.
If your washing machine has Automatic Temperature Control (ATC) it won't heat the water over 92 degrees and that is not hot enough to kill staph. You will need to use a bucket to fill it with the hot water out of your tap, hopefully around 120 degrees. You need to get the things that touch your body as sterile as you can so you aren't re-infecting stuff that is trying to heal.
If you have been on a bunch of antibiotics, chances are good that you have 'bad yeast' overgrowth. I use Candistroy (Amazon, if not your local health food store) to control the 'bad yeast' growth and Saccharomyces boulardii (brewer's yeast) to rebuild the 'good yeast' your body needs for immunities and digestion.
Antibiotics also kill the 'good bacteria' making your body work even harder to digest and metabolize food (I ended up with IBS-C because of all the damage the antibiotics did), so I take 2 different probiotics. MegaFlora (refrigerator section at health food store, it is a live culture) is a pretty full spectrum probiotic, and I also use Culturelle because it is the only one with the Lactobacillus GG. The probiotics raise your immunities as well.
Can you get to a chlorinated swimming pool? Tanning lamps also help dry up the infection and help your skin heal.
Keep drinking the chlorophyll for however long the recommended time is. I am unfamiliar with the chlorophyll, but it sounds right. I use aloe vera juice and green tea.
If you are on an unchlorinated well, like in a rural area with fertilizers and animals, I have found that well water increases my toxin load and makes the boils worse. Well water contains a delightful array of micro-organisms that our over-loaded immune systems just can't break down. I use distilled for drinking and I take a quart, in a pyrex or glass measuring bowl (I like the pour spout, but you could just use a jar) of distilled water, warmed in the microwave, for a final rinse in the shower. I also take a mineral supplement because distilled water is 'dead' water, so no minerals, like from a well.
If you have been on the same antibiotic for a while, you can develop a tolerance. In my case, I ended up going from penicillins, to erythromycins to sulphurs...I developed tolerances to all of them, eventually, You will need to rotate your meds to avoid that, and that's why the probiotics are even more important.
Hang in there, Triplett8, it's a tough road, but I think with some environmental infection control and immunity building, you will be able to get a better handle on it :)
I agree! You should be out doing stuff with your friends and making plans for tomorrow. You'll know in a few day, week or so, if any of this will help.
I hope it does, these are the things I do, and I've been doing this for 42 years and none of this came from a doctor :(
Hugs and a sympathetic shoulder pat :)
Lisa