HS has really got me paranoid...any time I feel even the slightest pain in my affected areas I freak out and think im getting another cyst. Sometimes i do get one and sometimes I dont but I hate how this is taking over me to the point that I cant even get through my day without over analyzing every twinge of pain I experience. Any one else feel this way?

ariesgurl, way to express yourself! It does suck and I think everyone who reads it feels exactly the same way. As mentioned, there are periods of remission and I think there are also a lot of good ideas and products people have tried. So, hopefully some of them will help you. I'm trying something new right now, and after a while if I feel it is making a difference I will post it and let everyone know. Good luck!

I'm new to this sight but not new to HS...i've had it for 20 yrs.Only thing i can tell you ariesgurl,STRESS is a big factor in this disease.If your stressed out or compulsively got things on your mind (like having HS) it will make the condition flare up BIG TIME.Its not the only factor of course but it a main factor,i should know.After reading article after article i watched carefully what factors contributed to my flare ups....yep,stress.Bouts with HS can be the worst of the worst but there is a good quality of life that can be made....its all in how you deal with it =] Take care !

contactqueen has it all in 1 , i have come to terms with having Hs and i wont let it beat me it not goin to take over my life im afraid thats what has to be done keep saying HS you not takin over my life , i have got better on all parts of my body apart from my bum sorry to say the worst place, shower every other day with teatree shower gel and use teatree shampoo aswell so no other soap types come in contact with the sores, also turmeric powder is a blessing to dab on sore messy but it realises the pain tg , elaine

I'm with OP, I'm still in the anger phase of dealing with this retchid disease. As does everyone when going through something that is painful and never ending. But I'm holding on to hope that I can live a happy and fullfilling life regardless of HS. I too am also afraid that I might have passed this on to my son. I constantly worry about it. I just hope that you (and I) can someday find peace with this and live happily. Take care and good luck. You are not alone!

i am so sad and depressed beyond words. Ive had such a rough life. My childhood was awful, all I ever thought about was how when I grew up my life was going to be good and that I was going to live it on my terms and be happy but now HS wont let me be happy. Everytime I think things are turning around for me, something always brings me back down. Ive suffered with depression most of my life and this is just making it worse. The greatest thing that has ever happened to me in life was having my daughter but I cant even enjoy her the way i should because of this damn disease and the depression and the fear that she may have HS one day. I look in her innocent eyes and hate myself for having HS. I hate my body for letting me down. I wake up everyday and tell myself that I wont let this get to me but im losing hope. I look at other people out there exercising, and playing sports and I wish so badly I could do those things. I havent exercised properly in so long because of HS. I dont know, sometimes I want this life to just be over so that I can have some peace.

ariesgurl,

call me whatever you want, but do you know how pity you sound right now?

I am amazed how people would complain how bad HS is for them, how depressed they're, etc. Does it make you feel better?

Pity is a drug. You feel better by hearing "Oh poor you" for a short period of time, but then get depressed again.

You can hate me, scream at me, get angry, but as long as you keep trying new lifestyle and diet, you will finally get into remission.

Consider it tough love, ariesgurl. Listen to real advices that people give you here, not "oh poor you, I know it sucks" ones.

Sometimes when you think you reached the rock bottom, you get up, ignore the pain, explore, try, apply, etc BUT MOVE ON!

It's up to you if you want to be passive pity and in pain about it, or active confident and healed.

Your call.

Kostik,

Im not looking for pity, Im not looking for anything from anyone. Yes, it does make me feel better to be able to get my feelings out. I thought this was a place where we could come to express ourselves and tell people how we feel good or bad. Also i am not being passive, i am trying things in real life to help manage my HS but its a daily struggle so if Im feeling depressed, then I cant help it but I guess ill remember to not voice it here...

@kostik: I can understad where youre coming from, however some people don't need "tough love", they need support and a place to vent their feelings without criticism. What you said to ariesgurl was really unfair. You should know that sometimes we suffer more with this than we can handle especially when theres that cloud of depression always hanging over our heads. If youve found a way to be in remission, then congrats to you. But some of us havent gotten any good advice from doctors in so long that it all seems hopeless. So how about some kind words and support for those of us who feel isolated and desparate of relief...
@ariesgurl: I can completely relate to what youre feeling right now. And its not easy to have had a terrible childhood. I went through a rough one myself. I dont think i even had a childhood really. And now im 21 and finally can live the way I want to but really cant because of HS. I cant express how I feel somedays. Today was a very bad one for me. its like all the crap a woman deals with plus HS all ganged up at once on me. If you ever need to vent, Im here for you as well as anyone else. I too have depression among other problems that make HS so much harder for me. I just hope you know that this should be a safe place to vent and ask for help when you need it. It just seems other group members cant truly relate or are just that uncaring. Please let me know if you ever need to talk. I promise, I wont criticize you.. :)

I apologize for trying to bring some courage and action to step on the way to heal HS. If you want to share feelings and it makes you feel better, I am going to be out your way. I sincerely hope its helping
you with HS.

Have a good day!

Ariesgurl, this is a support group, so please feel free to express anything and everything you are feeling. This disease is so ugly, I'll say it, I hate it, I wonder 'why me' all the time. I think it is healthy to get it off your chest and now to other's who actually understand! So, I say vent away.

Kostik, I don't know where you are in your acceptance of this disease, but let's try and not judge. I appreciate your strength, but not everyone is where you are, and everyone and their situation is different. A support group is a safe place to express anything you are feeling.

Seriously Kos..... Did you even read what you wrote? Why does one person put another down for expressing themselves. It maybe thier way of dealing with it. We are all different. I want to know something do you know what its like to have HS to the point where you are in the hospital or doctors office 4 to 5 times a week? Do you know what its like to have to have Picc Lines placed so that you can get IV antibiotics because your HS is so bad that you continue to get MRSA infections, Im guessing not, because it seems as though you have taken this approach of dealing with things in trying to make others feel bad. SHAME ON YOU!

Aries- Ever hear the ld phrase. "IF you dont have anything better to say dont say anything at all" Maybe Kos, should have remembered it. Now, on to what you typed. It is completely normal to run the gamet on emotions when dealing with something like this, I can tell you I have been, sad, angry,happy, every emotion under the sun mulitple times. and will probably continue to be that way. Anyway keep your chin up and remember not everyone on here are.....(well you fill in the rest) :)

Thanks for the support everyone :)

People need to relise that sometimes we all need to get our pain out. THis disease, as we all know, is HORRIBLE!! Physical and emotional pain that we wouldnt wish upon anyone. No cause/ no cure! No real way to explain the "outbreaks" to potential intimate partners so they can understand it. We need to support eachother even in our anger/sadness. When I as diagnosed there wasnt the internet support groups for this. I felt VERY alone. Alone in my sadness, anger, I felt that i was the only person on earth that had this. We need to hear eachother and be supportive. Anger and sadness is not a pity party...it is the REALITY of our incurable skin disorder.

While anger and sadness are not a pity party, they DO impede our healing process. By this I mean, the more sad and angry we are the more stressed we become then the stress makes more flares and the cycle blows up insanely bad. I see Kos's point, that the less we think of how badly our life is the less stress we will feel. I mean, I have had HS for 28 years, I have had surgeries, pic lines, MRSA, systemic infections, lost babies, I&D's, depression, suicide attempt, long hospital stays, skin grafts, lost my ability to hold a job, impacted my families LIFE because I can NOT work anymore.... I too thought I was the ONLY one.. I was miserable. I was misdiagnosed.. treated like a whiner when I complained of the horrible pain, like a druggy when I asked for pain medication, you name it, and I have been there, done that. My life is/has been, a fkn mess for years ALL because of HS.
In high school I had a boyfriend "kindly" tell my peers that I had an STD because he saw a cyst on my inner thigh.. what a fkn nightmare! To this DAY he STILL think I have an STD.. he created a total nightmare for me with my friends and caused me more pain and grief than is imaginable.
I used to dwell on my terrible path in life, and I used to lay and cry for hours a day.. my life is horrible, runied, over.. fkd up. I had no idea what I had, no one to talk to.. nothing. So after years of fighting the lonely fight I decided to end it all one night. I had an 11 month old baby and a 10 year old son at the time.. wtf was I thinking? But I just couldn't take it any more. I was SOOOO alone! Sooo depressed and in SOOO much pain. I had stopped caring for myself hygenically for the most part, I barely ate, I NEVER cleaned house.. ALL I did was lay in bed or on the couch recounting my horrible life.
I took my baby to my mothers house and left her there and secretly left all her clothes in her garage, my mom had no idea what I had in mind or she would have never let me go.. I then went back home and took ALL the vicodin, darvocet and other pain medication that I could find in my medicine cabinet. I was D O N E done. I WANTED to die. I WANTED to free my husband to find a decent wife and give my baby a REAL mother. Not a piece of crap like she had.
Thankfully the good Lord had other plans in mind for me and my hubby came home unexpectedly and called the police and ambulance. I was placed in the hospital for 2 days then sent by police escort, while handcuffed, to the psych ward of a local hospital. This "horrible" turn of events turned out to be my life saver. While in the nut ward, I met a doctor who KNEW that I had something wrong with me and thankfully called in an infectious disease specialist. Thank God he was from Florida and had seen MANY cases of HS in his career.. 2 seconds with him looking at my body and I FINALLY had my diagnosis. The diagnosis I had longed for, dreamed of.. and prayed for, for soo many years. My elation was short lived though when I found out that it was hereditary, and incurable. Now I feared that I had passed this horrible monster to my son and daughter. Anyway, I was in the psych ward for 2 weeks, and put on some major anti depressants.. along with intensive therapy. Through all that I have come to the realization that this is the path in life that God has chosen for me, and that I can and WILL walk it to the best of my ability.
Sure I get depressed and sad.. hell I even get MAD about having HS.. but I now try to do ANYTHING to take my mind off it. I try not to be alone at all when I am feeling down.. I try to involve myself in as much as possible and sure there are times when I have to cancel plans, but the people around me know of my HS and understand my problems.. as well as they can I suppose. I used to try to hide my HS.. and if my mom had her way I would STILL keep it hidden, but all the lies and broken promises were killing me.. making my HS worse and driving my deeper into depression. While my mom (yes, my OWN mother), is ashamed that I have HS, I am NOT. It is not from being "dirty" or fat, or diabetic, or any of the other ridiculous rumors out there. My mom can not grasp how I got HS when NO one else in our immediate family has anything like it.. those fkrs ALL have perfect skin and perfect lives, lol. I can totally see the shame factor in it, but I do not agree with it in the least. I am proud to have HS.. even though I am not happy about it, I refuse to hide it and let it get the best of me!!
7 years have went by since my diagnosis and hospitalization and life has continued to go on around me. God has blessed me with another beautiful daughter (my last) and I am now in a "happy" place. I refuse to let the depression control my life and my HS any longer.
I truly believe that kos merely meant that we need to fight against the depression as much as possible to keep it from letting the HS win the battle. I too sometimes say things that are taken the wrong way, and I do not believe she meant any harm in her comments.. I think she was trying to give a heads up on how to look at the more positive aspects of our life.
I am glad that you are here and hope that you continue to seek support from us. There are MANY people here who are where you are and some who have been where you are.. the amount of support that you can get from us is endless.
We will be here for and with you every day, every step of the way down this path in life that HS is.
Hugs.