Hidradenitis Suppurativa

sunnyhours

Hi everyone!
I hope everyone will have a good valentines day!
On another note I need to tell you about my affliction(s)...
I've been better as far as arthritis pain is concerned however, most of you don't know me and thus you don't know about my H.S.
I have a very rare skin disorder called Hidradenitis Suppurativa. It's a very painful not well known disease with no cure as of yet. It's a disease that manifests with boils and cysts in the groin, armpits, hairline, behind the ears, and basically everywhere you sweat. It's a disorder of the apocrine glands (sweat glands). It's also believed to be closely related to arthritis.
With this message I'm trying to raise awareness about the disease. I'm having a very bad flare right now and I feel I have to talk about it since I'm in a bad position.
To get relief from my arthritic symptoms I have to exercise...most of you will think it makes sens and that there's nothing there...
For me there is, since when I exercise it alleviates my arthritis but my H.S springs up. It's mostly in my groin area and it's such a painful disease! You have no idea!
I have 2 infected golf ball sized cysts in my groin right now and just walking hurts.
Since it's such an unknown disease, it's more often than not misdiagnosed with other skin conditions such as acne. They say only 1% of the population is affected but I could bet money on the fact that 90% of people are too ashamed to come forward with it and show it to their doctor...
As a disease that isn't curable, and so widely unknown, doctors don't know how to treat it...they also don't take into the pain factor in all that, since H.S is pretty much ignored from Pain Management guidelines and literature.
It results in a 21 year old in pain with no way of coping. Sorry for this "rant" but it's been 4 days I've only slept a few hours since I wake up in pain because I move a lot during my sleep.
If you are up for it, and have a good gag reflex you can look up pictures through Google.
Thank you for listening...

skezier

Oh Fred I am so sorry.

I can't help you except to say you will cope cus its what we have to do.

I so wish I could tell you how to ease the pain but i think you must keep on at them cus the way your feeling now isn't acceptable.

Hang in there and know we do understand even if we can't help. A cuyber ((( ))) and a hope you can get some kind of pain management. Cris x

elnafinn

I am so sorry to read your thread. I expect you already know that there is the British Association for Hidradenitis Suppurativa. I found an hs forum on the net too too but it is american based. I do not know if you have already joined an hs forum. At least you would not feel so alone with all this.

I learn something every day on here. I have never heard of this before. You must be in such pain and I wish I could help you. I read that stress does not help matters but how can one not be stressed and upset about this. My heart goes out to you.

On further investigation I did find an hs forum in GB. I understand that FaceBook has some support groups that are non profit with links to information on studies of HS. I am sorry that I cannot be of much help but you do have my sympathy, big time.

Gentle hugs
Elna x

dreamdaisy

Heck, sunnyhours, some of the people on here know their stuff (or know where to find it). Join the HS (GB) group and soon, especially if there isn't the Canadian equivalent. I guess its another manifestation of an evil immune system, yes? Bloody human bodies, who the hell in their right minds would have one? I am so sorry to read about this but I will forgo the google invite for the time being, if you don't mind. I hope things ease for you soon. DD

sunnyhours

haha don't feel bad...I'm just feeling down cuz I'm kind of in a tricky situation...I've got a choice to make...either my back hurts or my groin hurts...the way I see it is my doctor doesn't believe me when I say my back is killing me, so I guess he can't ignore the H.S since it's clearly visible. So I'll just keep exercising to keep the back pain under control, while enduring the pain from H.S...maybe he'll have more empathy towards this condition since it's (VERY) visual?

dreamdaisy

Your doctor and empathy? Who are you kidding? If he doesn't have it for the arthritis he won't have it for the HS. Empathy is something that more than a few doctors lack. You do what you can do to help yourself as no-one else is going to help that much, that's my bleak take on it all anyway. DD

sunnyhours

Yeah I'm really tired since I didn't sleep much...it's my take on life too but somehow I survive through believing that someday a doctor will help me out...I'm just tired of pain...I wish at least since it's that gross and ugly that it didn't hurt...it'd be easier to deal with it at that point...my complaint is still and always will be my #1 complaint...
There's just no way out for me it seems...
If I exercise, then the pain from Arthur dissipates, but the H.S appears (because of sweating and friction).
If I don't exercise then arthur shows me his dark side and the H.S slowly disappears...
It just seems like there's no way out...

elnafinn

Hey, I suggested that you join the GB group and you are in Canada - am I right? Doh! I read on a Canadian site or somewhere that a gluten free and lactose free diet helped one person with hs - have you heard that at all? What type of arthritis have you been diagnosed with? I also read that ReActive arthritis can be connected in some way to hs. What one learns on the net. True or false - that is the question.

Elna x

barbara12

Hi
And I totally agree,because arhtur cant be seen you get not only doctor not understanding, but you can get ordinary people saying oh you have arthritis, thank goodness its nothing serious.
I do hope you get the help you need very soon, you really do have to get over to your GP what pain you are in, I know its not easy.
You stay with us, and at least you can have a rant now and then , and know that we understand some of what you are going through.
I do wish you well.
Barbara x

sunnyhours

Yes, I'm in Canada, for better or worse :P
I did try all those "cures" however each person will react differently to different things so it doesn't work for everyone and it also might be a scam...I didn't see any difference. I've read everything I could on the damn disease and there is not one commonly known cure. I've been on multiple topical as well as antibiotic pills and nothing help...not even excision of the area...
I also heard RA is related...but since it's not a major disease (>1% pop.) there aren't much research on it...so no one really knows. There's no known cure although some people are lucky enough to go in remission sometimes...it's thought to be an autoimmune disease.

mp1952

Hi Sunnyhours

So sorry to hear about your problems.. I have, in fact, heard of HS.. A few years ago we were told my 20 year old daughter might have it, as she kept getting lumps in the groin, which were blocked sweat glands , but fortunately they turned out to be 'simply' blocked glands, not an ongoing condition.. She had scared herself silly by looking at HS photos on the internet...

It is an awful condition and I didn't realise there was a link with arthritis..

I hope you get some support from the organisations that have been mentioned by other peeps.

best wishes

Marion

tillytop

I am so sorry you are struggling so much Sunnyhours. As if the arthritis wasn't enough eh?

I do hope that this current skin flare subsides soon.

Thinking of you.

Love Tilly xxx

julie47

Morning sunnyhours
I have just been reading through your post and I am one of the millions who had not heard of HS.
I am sorry that you are having such a terrible time at the moment, Can't do much for you but send a hug ((((((((())))))))
Take care
Juliepf x

frogmorton

Hi there Fred

WE haven't heard from you for a while now I know why :sad: Bless you - you ahve all my sympathy.

I do hope those horrible things go away at least a bit soon so you can get some sleep.

you must be so very very tired.

Nothing constructive to offer other than my support.

Love

Toni xx