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General Category => Skin Complaints and Skin Disorders => Hidradenitis Suppurativa Board => Topic started by: MLindsayB on Friday September 24, 2010, 04:14:08 AM

Title: Newly Diagnosed
Post by: MLindsayB on Friday September 24, 2010, 04:14:08 AM
Hi, I'm Lindsay, and I was just diagnosed a few days ago with HS. I can't tell you how relieved I am to find this message board... reading articles written by doctors has done nothing to make me feel better, but talking with other people who have gone through similar things always helps. I have about a million questions as well.

I am 22 years old, married, with a 3 year old son. I live in Michigan, and I'm mostly a stay at home mom, though I do work part time in a rather unique career.

I had serious acne issues from a young age (probably about 7, but I hit puberty around there as well so we just assumed it was all one big thing), and about 8 or 9 months ago I noticed a lump in my armpit. At that time it was about the size of a pea, and very tender to the touch. No redness, no white head, but definitely some swelling. Over time it grew and I finally went to the doc about it about a month ago. He said it was a hair shaft infection and gave me keflax. The keflax did shrink it some, and the pain was a little less, but it never went full away (I will be honest and say that I did miss several doses of the antibiotic... It was a 3x a day one, and I'm horrible about remembering pills). Once I was done with the antibiotics, it grew again, and became more painful. I was taking a really hot bath one day and laid down in the tub for a while so it was submerged, and the next morning I noticed it had been draining pus in my sleep. At this point it was starting to look red, but not in the same way that a regular pimple would... more... scabby, if that makes sense. I tried poking it with needles to drain it at home (and yes, I know now that was a very bad idea) but it was too deep for me to get anything out.

I went back to the doctor because the pain was getting severe. It hurt all the time, and far worse if I touched the area or if I rested my arm flat against my side. At one point I tried to squeeze it a little and thought I would black out from the pain, so I haven't done that again. I went back to the doctor and he noticed a double comedome slightly above the affected area and said it was specific to HS. I have had the double comedome there since my preteens, I always have popped the blackhead out but it just came back.

At the moment it is about 2 inches long, and sort of shaped like a caterpillar about the width of a nickel. While I haven't noticed it actively oozing since after that one bath, I have put hot compresses on it here and there, and it seems to be constantly draining a very small amount. It smells like... sick people, in a hospital. That underlying smell all hospitals have underneath the smell of cleaning chemicals.

The doctor told me not to shave or use deoderant, which is definitely actively bothering me, but I'm sticking with it. The not shaving in particular is very difficult with my job, as I have to wear tank tops and corsets a lot (I'm a Dominatrix lol).

I'm not sure if they are connected, but I do get lumps on my inner thighs a lot, like zits, just probably about the size of a marble. They have never gotten bad or crazy like this armpit thing. I have also several times had pimples on my butt and breasts that get really big and once drained, leave nasty looking purple scars. Again, I have no idea if that's connected to HS or just bad acne and bad luck lol. I also have another double comedome like the one in my affected armpit, on my pubic mound. Does that mean I am more likely to get lesions there?

I know that not everyone progresses to stage 2 or 3, and that you can have stage 1 one place and stage 3 another. Part of what I'm wondering is the ratio of HS sufferers... how many people is it no big deal, like slightly severe acne, and how many people does it actually become something that affects your quality of life? With my current situation (I'm assuming it would be considered stage 1) is it likely that this will get worse or continue, or could this be just a one time occurrence?

I am overweight and I am also a smoker. I have lost 17 pounds in the last few months and I'm hoping to continue that, and while I am not ready to quit smoking yet, I do plan to eventually. Also, since I don't know if medications have any impact or relevancy, I am on Adderall, Prozac, and occasionally Xanax. I read that flare ups are triggered by stress, which is especially scary for me since I do have an anxiety disorder, not to mention I have a 3 year old, which as everyone knows, means stress.

Anyway, I can't wait to hear from everyone. I'm so glad this board is here. :)

Title: Hi Lindsay
Post by: gfpaperdoll on Sunday September 26, 2010, 05:32:32 AM
Hello & welcome to the forum, if you will read my thread right below this - where I say I do not have HS - well I do have it which I found out earlier this year.  Mostly stays in remission.  I have been researching this for 4 years & with the help of some other people with HS we have found that the trigger is the starchy carbs & dairy.  That would be all grains, dairy, sugar & legumes.  We are totally gluten free and mostly Paleo diet.  We each have our own trigger foods.  Some people can eat some rice - some cannot.  My trigger foods are rice, nuts, chocolate & cheese.  

I seem to do okay with the once every other month scoop of gluten free ice cream - but not any cheese.  One young lady about your age reports that she was eating popcorn once a week with no problems but then ate it three days in a row & got a boil.  

So first you want to be gluten free and dairy free & then cut out the white potatoes, corn, rice, beans & sugar.  When your boils are all healed up & you have no new ones then you can try adding in the occasional rice, white potatoes, corn and beans.  It seems that we can tolerate about one starchy carb serving a day but then maybe not everyday, and certainly not the same starchy carb everyday.  I can sneak some chocolate in about every 7 to 10 days.  But rice, nuts & cheese = never for me - huge pain.  You can react to a food from 20 minutes later to exactly 24 hours later.

Please also note that some of us cannot tolerate chocolate, nuts, corn, eggs, white potatoes, or caffeine.

Antibiotics do nothing for HS, it is used to treat a secondary infection.
Title: Re: Newly Diagnosed
Post by: gfpaperdoll on Sunday September 26, 2010, 05:44:04 AM
Some people think (& me) that the gateway to other addictions like alcohol, smoking, and drugs are opened by our consumption of grains, especially wheat, and dairy.  Because when they are consumed they have an actual opiate effect in the brain.  You might find it easier to quit smoking if you were to get off the grains & dairy.

It is a choice & you have to want to...  Some people know the connection to HS & diet but prefer to continue eating their bread & pizza, sad but true.  Everyone has to make their own decisions as to what is the most important to them. 

You can get blood tests for celiac & gene tests & an endoscopy, but you probably have gluten intolerance (GI), my guess because you mentioned depression etc - GI always comes with neurological issues.  GI will usually not show up on the medical tests.  & you have to decided if you even want a celiac diagnosis on your medical records.  You can test thru & not need a doctors orders & the results will not go on your medical record - unless you get your health insurance to pay for it - if they will.  Lots of good reading on even if you do not order the testing - which you can get up to a year after going gluten free.  But blood test & biopsy you have to get before you go gluten free - if you choose to go that route.  It is genetic... any other autoimmune illnesses in your family?
Title: Re: Newly Diagnosed
Post by: MLindsayB on Sunday September 26, 2010, 08:06:23 AM
No auto-immune in my family that I know of, though there is a history of pretty much everything else (heart disease, diabetes, cancer, parkinsons, alzheimers, high blood pressure, depression, etc).

My depression issues are more circumstantial than chemical... I was diagnosed with post traumatic stress disorder after being raped at 18, and have since vascillated between depression and anxiety. I also had postpartum depression after having my son. But there definitely could be some connection.

I at the moment (and most of my life) have eaten a diet very heavy in cheese and starch... definitely time to change that, I see. The one thing that came to mind when you mentioned food intolerances is that I was allergic to dairy as a child. Not lactose intolerant, but something else, and it applied to all dairy, including the lactose free stuff. I outgrew the allergy around 7 or 8 years old.

Do most people who have this disease progress to the 2nd and 3rd stages? I found some very scary pictures on google of course (not making the mistake of looking there again), but it's hard to know if that is the norm of what this disease may have in store for me, or if those are just the extreme cases.

Thank you both so much for your responses :)

Title: Re: Newly Diagnosed
Post by: MLindsayB on Sunday September 26, 2010, 08:36:02 AM
I just realized that you are one person, you just posted two responses. Sorry, I'm half asleep :P
Title: Re: Newly Diagnosed
Post by: gfpaperdoll on Monday September 27, 2010, 02:25:23 AM
Denny, each person progresses with the disease differently - some never go past stage 1.

With your family history you would really benefit from going gluten free - without using the GF grains.  A lot of people with HS know that they cannot tolerate dairy.  I am not surprised that you think that you outgrew your dairy allergy.  But really it is still doing damage even with no outward symptoms.  Dairy can also cause villi damage like the gluten grains.  It is the casein in the dairy that we have issues with, so the lactose free stuff is totally off limits for us.

I am just guessing but I think that if you totally give up dairy 100% & quit eating the gluten grains and curtail your carb habits by adding in more fruits & veggies & meat, that your HS will soon be in remission.  You might be able to tolerate the occasional rice and corn, and beans.

I am sorry for the trauma that you suffered.  The gluten free and dairy free diet will really help with your depression and anxiety.  You probably have no idea how bad you feel until you totally get off the grains and dairy.  Your energy should improve & you should have a little well of happiness inside of you.  Most people, once they get to that point, will never go back to eating grains again.

I hope that you will stay in touch & let us know what is working for you.
thanks you