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, culminating in drainage, often leaving open wounds that will not heal.

1 Online
1 Online

1 step forward, 2 steps back

I know ya'll can relate to the toll the nonstop roller coaster ride of HS takes on us sometimes. Today I am so frustrated that I have like no damn energy at all. I have been feeling better this week until today and its like damn I would have rather felt a little shitty every other day this week to not feel so damn lousy today....and being as I have HS...when I feel that I got hit by a truck feeling, I know it means I will probably start tomorrow and have another lovely sore or three.

why is it I have been sitting here for two hours now trying to muster up the energy to walk around my neighborhood? The weather is perfect here and the sun makes me feel better and I walk in cotton shorts so it doesn't really aggravate my sores or cause new ones, thankfully...but still have I put on my tennis shoes or charged my phone so I can listen to pandora on the walk or anything...no b/c I feel like crap.

Thanks ya'll for being here and being candid in your experiences and supporting one another. I am going to take some tylenol and a vit d and make myself go outside and appreciate the weather before it gets kill your grandmother hot out here again. I live in Phoenix, the summers are super hot but dry so it's not so bad actually, much better than hot and humid. :)

I hope everyone has a great weekend. Just knowing ya'll are out there (like the aliens, sorry I'm guessing I have a fever if I am making dumb jokes that only make me laugh)...anyways knowing ya'll are out there and can relate helps so much.

Replies

deleted_user
deleted_user

I definitely struggle with fatigue and I often feel really sad and don't want to get up and face the day.I hate saying that but its true..the last week or so has been really hard for me to get up and feel happy about my day.I have 4 new sores right now and they hurt and are wiping me out.Its frustrating :( and I felt sad today because I realized I am getting so used to having them and used to the pain that its weird when I have days that I feel good.I'm sorry you are not feeling good :( I wish we lived in the same state! it would be nice to have a workout partner who understands the challenges HS presents with working out.
deleted_user
deleted_user

I feel the same way ive been trying to lose weight but im constantly in fear of getting a new sore :( I havnt had.any new ones lately but it makes the area under my arm really aggravated.
deleted_user
deleted_user

I hate that fear :-/ and I mostly struggle with sores on my inner thighs when I work out.Seems like that area gets really aggravated when I work out.
deleted_user
deleted_user

Yeah, I get them on my inner thighs too...when I first started getting them I thought it was because my thighs rub when I walk. I bought a cheap pair of cotton shorts that are way too big at Walmart and it seems to help. I still wear tank tops to walk or hike as most of my armpit ones are below my bra line and unless I all lifted my arms up no one would ever know. I never wear them other than that as I am too self conscious about my gut at the moment. I also almost always hang out in my house in one of my pj dresses...all cotton and loose that seems to help my skin breathe. I am fortunate that its just me and my man in our apt and so dread when his family visits b/c he is old fashioned Puerto Rican and wants me covered up like head to toe so it sucks b/c I break out from wearing clothes too long.

The vit d seems to help a bit with the fatigue. I just started taking it Sunday. I had a coupon and it was buy 1 get 1 so it pretty cheap.

I used to just sleep more when I felt lousy but since I moved to FL and back and gained like 30 lbs last year I sweat like a crazy lady in my sleep now. When we lived there I thought it was the humidity. I even got a dehumidifier and was still hot all the damn time. When I bailed out 6 months after moving to Tampa and maxed my credit cards to move back to AZ, I thought it would go away. Now I think I may be postmenopausal as my mom went through it early and I am 33 now. I am trying to pull off the 30lbs and maybe like another 30 after that to see if my night sweats stop and my HS improves a little. I know losing weight doesn't fix it but I think the healthier lifestyle it takes to loose weight helps me. So I made a carrot, pineapple and frozen broccoli smoothie in my vitamix this morning....this is amazing progress, I never would have drank a veggie in my 20's. I pretty much lived on sonic and taco bueno in college and after b/c I was single and it was easier.

So here is to a new day...I am headed to a girlfriend's to pay just dance 3 on the WII...I just tired it yesterday and tease Ragan that she has closet cheerleading skills b/c she is way better at it than me but I am competitive and its a helluva workout and hopefully I won't be in pain. The haung lian stuff works as far as that goes. I don't have any draining sores or real swollen red ring under the surface painful ones at the moment...wait till Aunt flo shows up and that will probably change.

I wish we all lived in the same town too...I am so lonely in PHX. I only have one girl friend here and she came from OK too...she doesn't have HS but she is a member of the fat girl club too...

Random, I know but if you like to read, Laurie Notaro is the funniest author I know....go to the library and get anything by here and you will laugh out loud and want to pee your pants and some of the crazy shit she says. She always cheers me up when I need it.
deleted_user
deleted_user

my bad on not proofreading...I have a effin degree in English and edit on side and can't even blame auto text... haha
tangerinebear
tangerinebear

I know how you feel by taking care of my daughter with DS. Last night she has a nice sized lesion forming on the top of her buttocks. and I am thinking well, what have we done differently to deserve this sweet little alien ( nothing) she started her period on the 23rd so I can only guess this is hormone related..( pisses me off)...... and yes, she is more tired when she has breakouts..... am so sick of this damned disease....I already have her on a low carb diet and refuse to put her on nothing but chicken and broccoli so in plain english..... I HATE WATCHING HER SUFFER WITH HS~ so I know how you feel...... hugs, Tangerinebear xo
deleted_user
deleted_user

I feel for you Tangerine Bear...I sometimes think it is harder to watch your loved one suffer than to be the one suffering. Kudos to you for being such a great Mom!
deleted_user
deleted_user

The other night at the circus I was sitting in the arena wondering....does any one else have hs in here??? I just wish I knee one person (besides my family) in person who had this a female that I could befriend and she would understand when I had an ouchie!!!! My sil thinks im exaggerating when I say im in pain and cant go jogging and it pisses me off to no end!!!! :(
deleted_user
deleted_user

I love the circus and can relate to wondering who has HS....I do that sometimes too.

I have mixed emotions about talking about my HS to non-HSers now as I feel like its draining and mutually frustrating when someone suggests something meaning well but they just don't get it and then they have some emotional reaction when I try to politely say that isn't the solution for me or been there done that or are you freaking kidding..it varies person to person.

I think that helps cope in a way, like the more I suck it up the higher my pain tolerance and more power my mind has over my physical being....sometimes that's an epic fail. I feel like HS makes us bipolar...I remember trying to almost prove I was when I was 18...I had so much anxiety and panic attacks and then would be cool and feel great like I was floating on clouds at other times. It seemed like a brain chemistry issue.....now all these years later, I think it was HS and I felt good when it was minimal and depressed/fatigued when it was flaring up long before it ever reached the surface of my skin.

I am rambling about this now b/c I noticed a lot of us have anxiety and panic attack issues and am wondering how that relates to our HS. I am seriously thinking about trying to get into medical school to learn more and then go a natropathic route and get a ND with the MD so I can open a clinic that treats HS from a more compassionate non pharmaceutical approach. Just wish I was a trust fund kid to pay for it all.
tangerinebear
tangerinebear

Thanks Mixie for your sweet comments :O) tangerinebear xo
deleted_user
deleted_user

I keep telling myself that there has to be a culprit to hs...there has to be something that everyone has over looked, maybe we are allergic to something maybe its genetics maybe its hormones or maybe.its nothing like that at all. Maybe our skin is just super freakin sensitive. I know not only do I have hs, my skin is so sensitive.that switching toilet paper sent my private parts into a craze. As a child I constantly had yeast infections bc of bubble baths or soaps and I finally ended up only being able to use dove. I have been using safeguard antibacterial but I think im going back to dove. Im laying here right now and I feel a flair coming on. I hope im wrong.
deleted_user
deleted_user

I know what you mean, I could never take bubble baths. I ended up in the hospital at like 5 with a bad UTI and remember my Mom telling me I internalized the stress of my parent's divorce at a young age and an only child. I also was told I got bad diaper rash and raspberries for no reason as I kid. I used to break out in hives when it was cold and we had to go outside for gym. I still breakout if I put a cold drink in my lap while driving. Doctors never had an explanation. I can't wear cheap earrings and always had sinus infections and strep throat as a kid. I got acne as a teen and still get it at 33.

So when HS started, the staff at the college clinic said I just had acne. I thought my boyfriend had given me an STD the first time I got a sore in my private area. Thought I had acne on my inner thighs b/c I was fat. I tried all kinds of stuff to lose weight in college but my diet wasn't so great. I eventually just accepted I wouldn't be a size 6, more like 16 now 18 and avoided doing things with the skinny girls, like swimming, going clubbing in cute outfits etc. Around my late 20's, I grew some self esteem, ditched the loser I had been dating off and on for 10 years and said forget it, I am going to live life and go to the beach even if I do look like a beached whale sometimes. This was hella hard for me to adjust but I wouldn't go back to the pressures I used to feel. I grew up in private schools not b/c we had money but b/c my Mom was a teacher so I got free tuition...Needless to say, I was raised around some materialistic superficial snobs...funny how I haven't seen any of those people in over 10 years.

I have tried all sorts of shit trying to figure out what the hell caused my HS since the doctors sure as hell never really seem to help me. Some are more compassionate, certain women who I think are mothers are just kinder in nature...others break my heart with their arrogant demeanor. I convinced myself that since my maternal grandma had rheumatoid arthritis and my mom has fibro however you say that pain condition that I got HS...my cousin got celiac...it made sense that genes played some role in having an autoimmune condition. Doctors are just not prepared to entertain these ideas with HS at this point in my experiences. So, I tried non-Western specialists and was told I was allergic to corn syrup and alcohol and that my mother's body rejected me in the womb. I am RH- so that sorta seemed correct even though the science behind "feeling" points on my body tells the ayurvedic doc what I am allergic to and my medical life experience baffles me to this day...I told them nothing about me yet they seemed to be more aware then any Western medical doctor I have met yet. Now I am onto Chinese medicine and acupuncture just too broke to pursue it right now. I do like the herb I got. Thank God it will last awhile as I had to use some of my tax return to pay for it...I am so in debt from moving to FL thinking swimming in the ocean would resolve my issues. I damn near committed financial suicide with that stupid idea but just feel thankful I had enough credit to pay to move back to AZ.

The pacific seems to dry out my HS...the Gulf and Atlantic didn't do so much so I think the humidity counteracted any drying the salt and minerals did. CA is not so humid and the water is much colder but I couldn't afford to live in a cardboard box in SoCal...I haven't a clue if the water temp that factors into it but think there is probably a different mineral makeup or something. I used to think dead sea salts dried it out but now I think the hot baths may just aggravate it and who wants to soak in a cold tub.

I'm rambling but I think its neat we all share experiences and seeing how our lives overlap in what has happened to us and how we deal with it etc. I am a patterns person and I am starting to notice patterns or trends sorta connecting dots b/w all of us to see if that reveals something we haven't thought of before to see if it can help us.

I am curious to see if anyone of Asian decent has HS...I naively thought HS only effected people of European decent or something mostly Caucasians got...going back to DNA or genetics but have learned that is not true after joining this site. So that leads me to think genetics may be a factor but not the only or even dominant link b/w us all which leads me to cultural or environmental connections...like an American of any race eats a lot of the same stuff, is exposed to the same airborne and water supply toxins etc. The reason I am curious about Asians is that their diet generally tends to be more natural non processed with lots of seafood and sea veggies...and I have read that a lot of the stuff we see like diabetes, cancers, heart disease, autism just doesn't occur in their cultures...leading me back to maybe HS is a biological reaction to something in our environment or food supply. Could corn syrup and/or artificial sweeteners really be the culprit? I wonder. It didn't really exist or dominate processed foods before my generation..meaning most of us here were raised on the processed crap...its in everything bread, ketchup, etc etc.

ok, I am going to stop rambling now..It's so nice having people who get it that I think I am getting wound up in excitement b/c I spent 10+ years feeling so alone with this. :)