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,...
Hi, I'm Amanda Davis, I was diagnosed with HS back in 2006-2007. I have under went pain and suffering, and surgeries and still here 2016 suffering from the same!! So if anyone can say or give advice it would be me but there's none to give. I have tried everything under the sun. So I am up for any new things or research ppl find please.
Freespirit
How bad was the surgery ?
Felkbodymd3
I had both under arms completely done and my upper chest and my lower back
Felkbodymd3
Left me with a lot of scarring, I didn't have the money for the skin graphs just looks awful and I'm still breaking out in places
lula73
Does "everything under the sun" include trying the AIP diet to determine if you have a food related trigger?
hopingforacure
lula73 after you tried the aip diet, have you had any recurrences?
lula73
The only time I have a recurrence is when I accidentally ingest gluten (my trigger.) example: I had 1 corn tortilla chip dipped in a Mexican queso at the holidays and had a flare...turned out the chef had made a roux then added a little cheese to give it queso flavor - doing the roux helped cut costs for the restaurant vs using all queso cheese. There are plenty of instances like this but I also have to eat out a lot with my job. Considering that, I do quite well. The flares when they occur are less severe and fewer lesions appear. I hope this answers your question. No flares is better than once every so often, but every so often is much much better than constant multiple lesion flares :-). Feel free to message me if you need to ask more questions.
Vildi
High alkaline, low fat, low salt diet with tons of probiotics! No refined sugars or processed foods! Well the second part is too hard to assume anyone can actually do that perfectly, but if your high alkaline and consume lots of probiotics it will balance an occasionally fast food meal and weekly dessert night. If I had known about this early in my struggle it would have prevented alot of pain and suffering. However it seems that your past that so it would just be helping discomfort like for myself in which case talking to a specialist to see if you qualify for Humira would be a logical next step for medical treatment and will also put you on the short list for a ton of new medications going into clinical trials. I am Hurley stage 3 and Humira prevented my having to collect disability.
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