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,...

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reallyreallyok 05/15/2011

Hello everyone

I'm new to this board and I'm so glad I found it!
I have H.S. Have had it since I was in grade school. Flare ups were about twice a year then. As an adult...forget about it!! I'm grateful that they stay primarily in my underarms. Although for a couple of years, I did get flare ups on my face..OUCH!!

I have had surgeries and won't do that again..I've had them lanced...NEVER EVER again!!! So my question is..what is out there that can help ease the pain. I CAN'T TAKE THE PAIN ANYMORE!!!

I'm battling vocal cord paralysis, in the closed position, so I can't breath all that well. I have several herniated disc from neck down, I either have celiac's disease or crohn's disease (the doctors are still trying to figure that one out.

The ENT doctor says that I could have surgery to to open up my airway but my voice will be compromised. (not a fair trade if you ask me)
My immediate concern is just to get rid of this PAIN!!!!!!!!!!!!!!!!
...and stop one of them from oozing constantly.. yuck
I'm at my the end of my rope..the wind is just holding me up
Any help would be appreciated
thanks
xoxoxo

tangerinebear 05/15/2011

Sounds like you have multiple issues. Have you tried diet to control some of your HS issues? if you have celiac disease and HS you totally should stay away from gluten...... have you tried that? also, if my daughter gets into gluten she gets all the oozing crap andshe is a mess. She is on the paleo diet. it does not totally take her stuff away but it does help..... Am so sorry about your airway.....sounds compromising to say the least..... I know with multiple issues life can be a super challenge as my little girl she is 17 has asthma, allergies, and HS....plus Down syndrome. Today I am having trouble coping and she is doing fine..well, her asthma is acting up today but the air quality in houston was yucky today..... I am a 24/7 caretaker and do thebest for her but get weary so I can just imagine you all with multiple issues...it is hard to deal with...You have come to the right group and should find alot of info here...God bless you, Tangerinebear xo

tangerinebear 05/16/2011

and another thing, gluten is in everything so check your condiments I use Adams spices gluten free, also read ingredients in everything.... also, my daughter had to give up processed meats...they gave her horrible boils...We eat as clean as possible, She eats only chicken or pork that I prepare...no lunch meats or sausages.... you will be amazed how your HS will get better little by little if you try..... tangerinebear xo

reallyreallyok 05/16/2011

Tangerine..thanks so much for the words of encouragement. It sounds like your plate is full as well. How is your daughter doing these days?
I've been trying to do research on gluten free products and it becomes a little overwhelming. Any information you can give will be greatly appreciated. I don't like to dwell on HS, but when the first thing in the morning you feel is pain, it's hard to ignore.
again thank you so much!

reallyreallyok 05/16/2011

GFPaperdoll

I'm so trying to start a new way of eating. Really just eating period. Back in 1998 I had a hysterectomy which resulted in me getting 6 inches of my small intestines removed. So food and I have not really been friends since then. I've been looking into trying raw foods, never heard of the Paleo diet until yesterday, so I'm going to look into that.
I am so thankful for your information. finding this board is a blessing!

reallyreallyok 05/16/2011

GFPaper

Also the vocal problem came from cervical disc herniation surgery.
I've had 2 surgeries for this and the last one paralyzed them. That was 3 years ago.

deleted_user 05/17/2011

After trying antibiotics you can try biologics if you have a good dr who has worked with you on this. Diet works for some and others use meds and surgery. I have been on Humira for aout 7 months now and it has done wondres for me. The humira is also taken for Chrons as well so it may kill two birds with one stone. It is a biologic so there are many things to consider before taking this step. Please exhaust all options as far as antibiotics if meds are your chosen route. this may give you somthing to ask your dr about. It has completely changed my life. I was untouchable for about 7.5 years until Humira nad now I am pretty good on most days. I was in constant flare for the last 3 years and now I only have a few active wounds. I hope you find something that works for you. I will continue to keep you and all us HS suffers in my thoughts and prayers as we all struggle for the cure.

Amber

deleted_user 05/18/2011

Please remember at all times that while this is a great site and a wonderfully supportive one, not one person here is a Doctor and all medical advice is anecdotal. I have seen no mainline studies done on gluten tolerance and HI...and I certainly have found no connection myself.

Gluten seems to be the great Bogey Man these days...all of a sudden everyone is Gluten Intolerant, when in fact, not many people in the general population actually are. By all means try it...it certainly cannot harm you, but be informed and wary. Run everything past your Doctor.
An informed patient is the wisest one. jean

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