topic Re: Hidradenitis... in Wellness

Hidradenitis...

nana59 — Fri, 26 Jan 2018 22:44:13 GMT

At my wit's end with this condition...can anyone offer me some advice....

Re: Hidradenitis...

shaggygirl — Fri, 26 Jan 2018 23:22:05 GMT

I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

I just came back to add this. Maybe your situation isn't as serious as my friend. Her areas of issues were the armpits and then the worst were........how to say........the areas that your undies cover. It's been some time since I did any reading on it being she then was hospitalized and passed from the leukemia so can't remember now if those are the only areas that are affected or if the boils can erupt elsewhere on the body as well. By the way, to the best of my knowledge there was no connection between the hidradinitis supportiva and the leukemia.

Re: Hidradenitis...

nana59 — Fri, 26 Jan 2018 23:18:31 GMT

wrote:
I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3 years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

Thank you for your caring thoughts....i, too, have tried many many different treatments...no relief....and have done alot of research on the internet....spent 5 days in the hospital in sept......never healed....went to hospital this past monday for another infection in same spot.....i'm just so weary......thank you again...sorry about your friend...

Re: Hidradenitis...

shaggygirl — Fri, 26 Jan 2018 23:23:59 GMT

wrote:
wrote:
I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3 years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.
Thank you for your caring thoughts....i, too, have tried many many different treatments...no relief....and have done alot of research on the internet....spent 5 days in the hospital in sept......never healed....went to hospital this past monday for another infection in same spot.....i'm just so weary......thank you again...sorry about your friend...

I guess we were typing at the same time, I added to my previous post! Good Luck To You, I Wish You A Cure!

Re: Hidradenitis...

spent2much — Fri, 26 Jan 2018 23:25:33 GMT

@nana59I've never heard of this, but from the description it sounds SO unpleasant. I live with chronic pain, so I'm very sensitive to other people's ailments. I'm so sorry you have to live with this. **HUGS**

Re: Hidradenitis...

nana59 — Fri, 26 Jan 2018 23:29:13 GMT

wrote:
@nana59I've never heard of this, but from the description it sounds SO unpleasant. I live with chronic pain, so I'm very sensitive to other people's ailments. I'm so sorry you have to live with this. **HUGS**

thank you...i, too, live with chronic arthritis pain....sometimes-most of the time-it's too much for me to handle...

Re: Hidradenitis...

nana59 — Fri, 26 Jan 2018 23:34:26 GMT

wrote:
I had a very good friend who suffered with it and doctored and doctored with it. There were times she was house bound from pain and bleed outs when the boils would come to a head and drain. She passed away 3years ago, nothing to do with the hidradenitis, she passed from leukemia. It's an awful thing to suffer with and I hope and pray for you and others who have this that someday soon there will be a cure. I do know that there is a lot of information on the condition on the web, sometimes I would refer her to sites I came across in my own hopes of finding some answers for her that would give her hope. It did at least let her know that she was not alone in reading the experiences of others. Sometimes rounds of antibiotics would help to ease it but there is no cure, at least there wasn't at that time. A few years have passed so perhaps there actually has been some headway with it. Some folks have gone through surgery for the tunneling but that is quite the trial to go through and doesn't seem to have a permanent affect on it. You have my sympathy for having to suffer with it and I will absolutely remember you in my prayers.

I just came back to add this. Maybe your situation isn't as serious as my friend. Her areas of issues were the armpits and then the worst were........how to say........the areas that your undies cover. It's been some time since I did any reading on it being she then was hospitalized and passed from the leukemia so can't remember now if those are the only areas that are affected or if the boils can erupt elsewhere on the body as well. By the way, to the best of my knowledge there was no connection between the hidradinitis supportiva and the leukemia.

Yup...armpits...and since sept my butt! i'm a very private person, and am tired of doctors looking at my butt.....especially doctors that are younger than my children!! just so demoralizing....

Re: Hidradenitis...

OKPrincess — Fri, 26 Jan 2018 23:37:09 GMT

wrote:
At my wit's end with this condition...can anyone offer me some advice....

@nana59 I have never heard of your condition but I'm sorry that you're living in pain. I doubt you're the only person that is suffering with your condition so maybe someone who has it or knows of someone who has it can offer you some great advice. Please. These days we have to be our own "doctor." Bless you.

Re: Hidradenitis...

fortune — Fri, 26 Jan 2018 23:43:22 GMT

wrote:
At my wit's end with this condition...can anyone offer me some advice....

@nana59

I did some research on this disease. I can't believe that they haven't found a cause--no bacteria, fungus, etc. I wonder if going to a teaching hospital would be warranted. Sometimes these hospitals are up on the latest medical advances. Also, I read that it is aggravated by smoking. Have you seen a dermatologist? It looks like this condition is connected to Intertrigo. Do you have diabetes or extra weight? Good luck to you!!! This sounds like it is not an acceptable health problem!!!

What have you tried so far?

Re: Hidradenitis...

Midnight11 — Fri, 26 Jan 2018 23:45:00 GMT

Have you heard of Emuaid?

Re: Hidradenitis...

LUVNLIFE — Fri, 26 Jan 2018 23:45:46 GMT

I not personally suffer from this but looked up a product called Emuaid cream. Also I believe in Eastern and Western medicine working together. If you have a Eastern Homeopathic store I would call or visit there. Your health and comfort are worth any bother to travel or try different products or special diet. Best wishes.

Re: Hidradenitis...

IMW — Fri, 26 Jan 2018 23:46:12 GMT

I am sending you some caring and healing thoughts.

have many incurable painful conditions- ie 5 pinched nerves in neck that can’t be operate on without very high risk of paralysis.

I, at age 66 have surrendered my pride re mds. I feel for you. Please remember you are not your condition.

Are you taking Pain meds? I hope you are as comfortable as possible and treat yourself well. I deny myself very little, since I have to deal with so much.

Sorry for the typing, neuropathy acting up.

Re: Hidradenitis...

Skyegirl21 — Fri, 26 Jan 2018 23:50:12 GMT

I’m so sorry. I would make sure you are trying to keep the hair follicles clear , i, e., lots of hot showers, exfoliation (dry and wet) and loose clothing to allow circulation... While I don’t have this condition, I have keratosis pilaris, so I get constant little bumps and pimples all over. It’s more mild and can’t be compared to hidradenitis. I send you best wishes that you find a way to manage this-

Re: Hidradenitis...

HisElk1 — Fri, 26 Jan 2018 23:55:10 GMT

@nana59, please excuse my typing as i recently had a total shoulder replacement and can only peck with 1 hand. i was diagnosed with this back in the 80's. saw a derm and given cort. injections in each one. didn't last long and he said i'd need them for a long time. my cousin worked for a plastic surgeon so i made an appt. he said hydrenitis is an infection of the sweat gland and i had surgery to have the glands removed under my arms. i was off work for about 4 weeks and it was so worth it. i know the other 2 places vulnerable are the breast area and 'downstairs'. some times i will get one in that area but it goes away eventually.

i do swaet more in other places but i am so happy i got the surgery. i also no longer have to wear deodorant nor have any hair growth - just 2 big scars under my arms.

the surgery was the best thing for me. i know what you are going through and its miserable.

Re: Hidradenitis...

SilleeMee — Sat, 27 Jan 2018 00:57:23 GMT

I'm very sorry about your condition @nana59. I don't have it myself but what I'm about to say might sound drastic. Since this has much to do with hair follicles, then I would talk to your derm about laser hair removal or something else to permanently remove the hair follicle. I really can't say for sure but that might be an option for you. The reason why I say this is because I knew a person who did not have this disease but had a condition where he would get severely infected hair follicles for no reason. He eventually had the affected areas removed of hair and now has a more normal life. Good luck to you and I hope you find a good doctor to help you.

eta- Another option would be Botox.

Re: Hidradenitis...

IMW — Sat, 27 Jan 2018 02:47:50 GMT

If you google hidradenitis you will find a wealth of info.There is a hidradenitis foundation, books written re the subject. Home remedies etc. 1-4% of population has the condition, so you are not alone.

Good Luck.

Re: Hidradenitis...

Starsmama — Sat, 27 Jan 2018 05:49:13 GMT

I've had hidredenitis since my early 20s. I'm now 73. It's just something I've learned to live with. I almost always have a flair-up going on. Ive had some of the sweat glands removed, but there are so many and it just travels around. My dermatologist sometimes puts me on antibiotices for 6 weeks at a time and that helps for weveral months, but it never completely goes away. BUT....this is my only chronic condition and at my age I'm thankful for that small mercy.

Re: Hidradenitis...

lolakimono — Sat, 27 Jan 2018 15:53:17 GMT

@nana59

Have you heard about Yin Care?

Re: Hidradenitis...

lenapecci — Wed, 31 Jan 2018 10:33:22 GMT

I too have this. It began when I was 23. I was not diagnosed until my late

40’s. I have had over 26 surgical procedures. Some were very invasive.

I have felt like a freak of nature.

When I was finally diagnosed I went on a search to find out all I could.

I was lucky I found an angel of a doctor in San Diego. She started me on a regiment

of kenalog injections, spriolactone, and doxycycline. I also changed how I eat.

I follow a low glycemic diet. My doctor suggested it as it helped other patients.

I have had only 1 flare up since seeing her. I traveled from Las Vegas to San Diego

twice a year to see her.

If there is anything I can do to help please let me know. I find it to be a very

isolating disease. It was hard for my family to understand how painful it is.

If you live near San Diego and would like my doctors name please let me know

i also belong to a group on Facebook. They also share their stories and information.

The man who started it wrote a book about it and works hard to help to get more

research going.