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,...
this HS is a stressful thing i feel so bad and depression right now i can,t take it no more the pain in my buttocks is just killing me i have one of the worst moments ever this disease really needs to go away forever i don,t know what to do anymore
We would all like to know what you do to try and get some relief.
There are several posts on here about Tumeric and Zinc and it seems to help some.
Right now I am using bandages soaked in castor oil with some success. It is keeping the bad spots I have open so that they can drain so that they don't swell up and cause me even more pain.
And I see a doctor that is willing to work with me, and I am lucky enough to be prescribed pain meds for it.
Have you thought about going to the ER and maybe having them lanced and drained? Hurts like hell at first, but once the pressure is off it is a bit, sometimes a lot, better than before the procedure?
We would all like this disease to go away forever, not just for our sakes, but for the sake of anyone who has ever had to deal with this disease and for the sake of anyone who has had to be caregiver to someone with this disease, and for the sake of anyone who might would ever come down with HS.
Also I have something to say, as I know I am not the only one in this group who feels like I do.
Why do you never reply to us when we try to support you and give you advice? It bothers a lot of us that we try to support you like we do each other, but you never make any posts except to complain. Don't get me wrong, we all need a place to vent from time to time. But we also never see you trying to support any of us in any way. Not once have I seen you reply to anothers post with encouragement, not once have I seen you reply to another's post with an idea or well wishes or anything else of the like. Matter of fact you have YET to actually JOIN our group. It would be nice to look at your profile and see that you have actually taken the time to join. It would be nice to see you post to others posts with words of encouragement, or a well wishing or anything positive.
There are times when I feel like death warmed over but I will see someone's post on here where they are having a really bad day, and even though I feel like crap, I will try to shoot them a few words of encouragement, or shoot them an idea that maybe they haven't tried, because I know there will be days when I will be in bad shape and will need the same.
All I am asking is that you acknowledge the members in this group when we try to give you encouragement to keep battling this disease, try to do as we do. It is really hard to continue to try to support someone who won't even say thank you when our members try to help you and won't even acknowledge us when we reply to your posts with words of encouragement and advice. There are members on here who have HS worse than others, but they still find time in their day to support others who are not as bad off as others. Please try to find time in your day to do the same for us as we do for you.
And in adding this comment, I promised to be nice, and I have been nice, I am just being honest.