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SWEETMOYA Posts: 48
8/19/09 12:06 A

I've had HS since I was 11. I've been having a really bad breakout lately. I get pretty awful ones down there and sometimes I can't even walk. I feel stressed out about it but at the same time I know losing the weight will help and I'll feel better. Before I used turn to food when I had a breakout and was feeling depressed but now I drink extra water, a bit of light exercise and take a relaxing shower instead. I'm not taking any meds or BC, I'm in a foreign country and I feel embarrassed about seeing the doctor here about it (there's a general lack of confidentiality). I will see what I can do in the meantime, I've been experimenting with lavender oil and turmeric, since they are antiseptic and anti-inflammatory.

MARYBEAR57 Posts: 315
7/17/09 3:35 P

A long time ago when I was seeing a doctor about the HS, he asked if I had considered swimming as the chlorine and such in a pool could help dry up the lesions. There's something to be said about the pool but I tended to stay away from a public pool because of the bacteria from others, etc. but that's just me. RIght now I am taking Doxycycline and have been on so many meds that I have lost track.

This is such a frustrating disease indeed!

Mary

CL0V3R Posts: 581
7/16/09 6:41 A

Hi Everyone,
Wow, I never thought that anyone would start this group. I only recently found out the name of this dis-ease i've been living with for almost 30 years.

As far as I can see, NOTHING seems to work to get this under control. I've done the antibiotics thing, done the creams/lotions, draining etc.
So far, seems that Swimming works - Maybe something in the pool water / seawater??

Just had a thought.......... i'm going to change my bath into a home pool!!!

MARYBEAR57 Posts: 315
11/13/08 11:29 P

Hi,

I was just playing around and doing a search in Spark People and decided to look up HS. I have an extreme case of HS and belong to an online support group that is a godsend. I did hear from another member of Spark People who also has HS and now I am reading these posts and am totally in shock that someone else has heard of it! If anyone who has HS reads this, please email me so we can share (if you wish to...).

Thanks,
Mary



RJTMCSBOO Posts: 4
5/28/08 1:07 P

Dear AShley i am relieved to find that there is someone out there who has this as well, not that i would wish this kind of pain on anyone not even my enemies, but still a little relieved that i am not alone. I too have had this condition for about 9 years, and the doctors that i have seen, and there have been many, all say the same thing, exercise. Lose weight, and you will be better, but if you are like me, i put my weight on after i started getting the big sores, simply because it hurt to bad to get up and do the things i loved, such as play softball, or even going for a walk sometimes hurt to bad. i wish that more was known about our condition. what have your doctors told you about this condition, if their like some that I've seen, they probably didn't have a clue how to treat it. i would love to hear more about you and what you've been through, emoticon

ASHLEYCANELON Posts: 1
5/27/08 3:31 P

I feel your pain as I too suffer from HS. You are the first person Ive personally come in contact with that has this condition. Ive had mine for years and it's recently gotten to the point of being extremely painful. I hope weightloss deals with this for me.. but if you ever need support with this, I would love a buddy going through the same thing :) emoticon

RJTMCSBOO Posts: 4
5/27/08 1:13 P

I never imagined that there were so many people who actually cared, i haven't had surgery due to the fact that most insurance companies do not consider that under their plans. my doctor said if i get my weight down that it might clear up a bit, but like i said earlier, excersice is more often than not immpossible, so thats why i am here, trying to find alternative ways to excersice. i really am grateful for any and all feedback

GGMOM06 Posts: 9,225
5/27/08 9:14 A

emoticon iam sorry for your pain,i looked it up too.I get "very sore and itchy,there" i see it says to have surgery on sweat glands that are involved,have you?

RJTMCSBOO Posts: 4
5/27/08 3:35 A

Thank you for taking the time out to get to know about my condition, i am surrounded by people who know i have it yet can't understand how hard it is to actually go out there and be active when it hurts so bad. I didn't think about the pool, water aerobics sounds great actually, i think that i will try and find a gym that offers it in my area. again thank you so much, sometimes i get consumed by my own little world, its hard to see the light at the end of the tunnel, so again , thank you

LUCAHJIN Posts: 161
5/27/08 2:42 A

Wow I just looked up HS.. I never knew such a thing existed. You must be really strong!

What about water aerobics or swimming? I don't think we actually "sweat" in the water - even when we work hard. Does water aggravate the situation? If so, I think you could also do quite well eating within your calorie range and doing something low impact like yoga or pilates.

Good luck!

RJTMCSBOO Posts: 4
5/26/08 8:46 P

Hello, I just joined this site and am excited to start my new diet and hopefully the rest of my life. I have a problem though that if any one has any advice i would be glad to hear it. I suffer from HS, it is a skin disorder usually affecting areas of a sensitive nature, it gets worse when you sweat, which almost makes exercise impossible, does any one have any suggestions as to how i can work out with out sweating

LOL looking for a miracle

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