Posted , 5 users are following.
Hello.
I am new to all of this. Suffered two years without knowing it was HS. It came out of no where went to primary doctor and gave me antibiotics and steriods over and over again. I dont know where to begin to figure out my triggers. I feel overwhelmed, sad and in so much pain.
0 likes, 9 replies
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sarah80474 jennifer14810
Posted
Hello, I have had HS for 20 years now. Wow...that’s crazy how long it’s been. I was 12 years old when I first noticed the problem. I hid it for years. It got much worse. When I finally went to a doctor they didn’t know what it was and prescribed antibiotics. Finally in my early 20s a doctor diagnosed me with HS. But again just prescribed me antibiotics. It was years of research and figuring out what triggered it in me. I tried staying off of dairy for a year. Nope that wasn’t it. I finally got the inkling sugar might be the cause. Sure enough it was! Since cutting that out of my diet my HS hasn’t come back. But if I give in, it does. For me as long as I’m not eating refined sugar I’m good. If a product has less than 10g I’ve discovered I’m ok. Also I get this question a lot. What about fruit? That’s perfectly ok for me. I don’t know if this helps you but I’ve been off of sugar for 3 years now and I’ve been clear! My advice is look at your diet. For me it’s sugar but for a lot of people it’s night shade vegetables.
jennifer14810 sarah80474
Posted
Thank you. I just do not know where to start. Glad you figured it out and do not suffer as much anymore.
sarah80474 jennifer14810
Posted
It really was a lucky guess in my case. It's super overwhelming so I get that. Seeing a dermatologist could help if you don't think going at it alone is best. I've read many people have kept food logs to help find their triggers. Cutting out a wide range of foods then slowly introducing foods back in to see if they're the culprit. I hope you find yours! If someone would have told me 20 years ago that this is very common to be food related, life could have been so much easier.
jessica45150 jennifer14810
Posted
I'm so sorry you have to live with this debilitating disease. It is a rough one for sure. I've had it since I was 12 thr Drs. did the same with me for so long. Now I've been given so many antibiotics that they dont work anymore. There is no where near enough research for HS. I am 29 now and just started Humira yesterday. The best thing you can do is get a good dermatologist and general surgeon. Doing an I&D is not gonna do anything but cause more issues. My surgeon does excisions on me. I hope this helps.
jennifer14810 jessica45150
Posted
I hope the humira works for you and I am sorry you have suffered for so long. No one has ever drained them, they always drain on their own. Good luck.
gregory4312 jennifer14810
Posted
Hello there, its completely natural to feel this way. Like the others mentioned, you should begin by looking into what triggers your HS. For me, I figured it was lactose in dairy and since cutting it down I scarcely get any abscesses. Another thing I did was taking notes everytime an abscess appeared and try to recall anything out of the ordinary I did or ate that week (nutrition wise, changes in weather and even if I wore a fabric that triggered me). Some people aside from lactose mention nightshades (potatoes, tomatoes etc since they come from the same plant family) and some have even switched their diets completely to paleo etc. I would advise you to join a facebook group since the conversations there are very lively and people make mentions of triggers a lot so that might help you.
gregory4312
Posted
No Idea why my message cropped itself. Anyways the key points of what I wrote are:
jennifer14810 gregory4312
Posted
Thank you very much for the information. It amazes me that things I have eaten my whole life now makes me sick.
gunga64 jennifer14810
Posted
Don't waste time with antibiotics from what I have read and found myself it does not work and they are not good for you at all. They mess my stomach up.
I have always had cysts but in the past few years I had issues around my belt area and and my arms , between legs. I had no real issues under my arm expect for long term deep cysts I had like 5 under one arm. They never got infected just awkward. Well I decided last year to have a general surgent remove them.It did took months to recover. Ever since then H.S show up there. I think when he removed the cysts he removed so much skin I have trouble with sweat glands now. So surgery can cause more problems. Went to many jeopardy they are all robots and say antibiotics and washes which have no effect. They are clueless now many want you on Humira which I did for a few months and cant say it helped or not. I got off it because I had cancer 15 years ago and don`t want my immune system put in jeopardy.
I believe this H.S is a sugar related problem or some grain, I would avoid refined sugar see if that helps. I use the baking soda and water wash and it shuts down the affected areas within 2 days.
I just have to try to get off sugar which has been hard. I have been on a diet and lose 10 percent of my wieght from cutting out calories, fat,soda and exercising but I have been still eating sweet food.
By the way I have a cheese and dairy alergy and have avoided those for many years except occasional pizza. When I cheat and eat chocolate with milk in it I think its a trigger for H.S I am not sure yet.
The baking soda and water wash is amazing, I have applied it to areas that refused to go away for years and it is shutting those down now.