Keeping HS at bay
Posted , 6 users are following.
Ok, so I started off replying to a couple of posts and then I figured that instead of leaving huge comments on other people's posts I'd better just make one myself. I don't mean this to sound condescending to anyone, I'm sure lots of people know some of these things, but for those that don't I'd like to share my experiences.
I handle my HS pretty well usually and usually have fairly clear skin with the occasional small cyst popping up and then disappearing again. I've been diagnosed for a good few years now and before I was diagnosed I was told that the cysts were 'just swollen lymph nodes' - until one ballooned up to the size of a golfball under my arm, burst, and sent me to surgery. Since then, I've tried just about every small thing (no other surgeries) that the good old internet has suggested, so here's what works for me.
First of all, and this is the biggest one, I sweat. I discovered this one on my own when I joined a 24hour gym last October. I try to go 2/3 times a week either on the elliptical machine or weight training, but whatever you're doing all that really matters is that you're sweating. I'm sure you've found the little hard lumps in your skin that if you squeeze them a fairly solid white goo comes out [such a glamorous condition we have]. Well I find that these are the beginning of the cysts when my pores are clogging up. When I don't go to the gym for a week or more I start to get tons of these. I find that sweat-wicking clothing is good for this as well. I work in a hot and humid underground bar so wearing jeans and a cotton t-shirt at work all night I get very sweaty but then the sweat stays on my skin with the damp clothing clinging to me, which is about the worst thing that I can imagine for my HS. This is the best thing I do for myself and it obviously has a lot of benefits aside from HS, but I know that lots of people have very advanced HS and so working out is hard due to the pain. Someone has said to me before that they would try a steam room, which if you had the means to do so would likely help also, or you could try some very low impact exercises that can still get the blood flowing and get you sweaty like the plank exercise (no movement at all) or yoga. Just remember to shower immediately afterward to wash the sweat away from your pores. You honestly won't regret it. I just want to shout from the rooftops about sweat haha.
The other things I do are partly doctor recommended and partly google-learned.
I'm on a specific contraceptive pill (bear in mind that it will be ineffective as an actual contraceptive while you're taking anti-biotics) that contains an anti-progesterone element. This is used for women with PCOS which causes excessive/thick hair growth, the pill helps to thin body hair. I honestly have no idea if this helps, but since I was on the pill anyway, I figured I might as well try it. My doctor initially put me on the pill because they said that it would help my HS, but a normal contraceptive pill will NOT have any effect if it doesn't contain this element. I had to be the one to say this to my doctor and ask them to change my prescription.
My google-knowledge led me to find an anti-microbial wash for the affected areas. I had just been using an anti-biotic hand wash since my GP hadn't said anything about it, so when I found it I started using something called Hibiscrub (which I'm sure many people are aquainted with). It worked well but it can be drying so my dermatologists (when I finally saw one) changed me onto Dermol 500 which is a nice soft lotion/wash that is much more gentle. I actually use this on my face as well to get rid of my acne. This stuff is important because improper washing of these sweaty areas can lead to a secondary skin infection or even mould. Especially since we can't use normal deodorant, this will kill all the odour causing bacteria in the area and help you stay fresh.
Speaking of deodorant, obviously anti-persperants are the enemy as they clog the pores. I use a Crystal brand deodorant-only spray. You can also buy this as a crystal stick. Lush deodorant bars are good also with tea-tree and bicarbonate soda but if you have an open cyst they sting like a b****.
I don't shave anymore, as I'm sure most people have stopped doing also. I now use a men's electric shaver with an adjustable length to deal with body hair.
I take multivitamins with minerals as your body is pretty much constantly fighting an infection and so things like iron can be depleted. Whenever I get a bad cyst I get a cold. It's like clockwork. My immune system is too busy dealing with the cyst to fight off basic illnesses anymore so I always get rundown with a cold. An immuno boosting supplement may help also, but I haven't tried any so far.
That's about it. I've stocked up on cardigans and long sleeves to hide my scarred and hairy armpits and although most people seem to like flowy clothing, I've grown accustomed to tighter clothing to stop chaffing - likely why I have more groin than arm cysts due to my comfy jeans.
I hope this helps someone!
3 likes, 10 replies
newzealand skellitor
Posted
Good on you for being able to keep this condition in mild form!
I do think that some people are less lucky though, and have a condition that is a lot more relentlessly progressive. So some may not find it so easy unfortunately
I am also like you I think. I've had this for about 5 years, but it hasn't really got significantly worse (Stage 1 at the moment). Long-term antibiotics are able to keep it in full remission for me, so that is what I do.
I also keep myself in good physical shape, no smoking. Also, I've tried to cut-down (but not completely elimiate) nightshades and high GI foods from my diet - not sure if this makes a difference though.
I do hope that this is as bad as it gets for me, and doesn't progress any further ever.
I think that some people simply have a more severe and progressive form of this condition, which is probably not helped by being overweight and having a bad diet.
skellitor newzealand
Posted
I know that this can get really bad so I feel very lucky that it hasn't gotten much further for me. I haven't been able to go to the gym for a long time because of a problem with my hip so my HS has been flaring up really badly and I'm back on anti-biotics. I have scarring from even some small cysts so I really do everything I can to avoid getting them in the first place because I know that the scarring can get very severe. From just watching my own skin and seeing the cysts forming I really believe that it is because of the clogged pores and a general predisposition for our pores to clog - at least in the early stages. Hopefully the information can be useful for some people starting out with the condition. I had very little information my first few years with it and they were really rough.
I forgot to mention that I also use Dettol laundry cleanser on my clothes and sheets, particularly when I have open cysts, to keep them clean and stop them from smelling.
aussie76 skellitor
Posted
Hi Skellitor, good on you for posting the detail, it's worth thinking about.
My first thought is that the latest research shows the issue begins in the hair follicle not the sweat gland. Only in stage III do they suspect the sweat glands are involved - maybe you're avoiding it's progression!
So yes! exercise! always! And it would be interesting anyone else following up you post and agreeing. Personally for me... sweating didn't make better or worse.
Totally agree on multi-vitamins, I take a good one and also a probiotic.
Avoiding soaps and using PH neutral washes along with antibacterial washes sparingly.
I've started using a teat tree oil spray as deodorant! sort of... Mainly to reduce the scars if possible... as the lesions are under control by avoiding nightshades. (just little redness and miniflares every single time I accidently have some hidden paprika)
skellitor aussie76
Posted
Hi, major respect for the nightshade diet. I just can't bear to do myself.
The infection is in the hair follicle but they share a pore. The hair follicle is deeper than the sebaceous gland, so maybe sweating from the sebaceous gland is washing the infection causing ingredients out of the pore? I'm just guessing. I really do notice a huge difference when I'm regularly working out.
I'm currently pretty run down because I have a bad hip problem that means I can't go to the gym right now and it's all chaining together so no gym = cysts = crappy immune defence = horrible cold/sinus infection.
Have you tried any immune system boosting supplements?
The only major treatment I've had my eye on is laser hair removal as some wavelengths can shrink the hair follicle and there was a pretty positive study on it a little while ago.
aussie76 skellitor
Posted
Hi skellitor, yeah very interesting, you might be onto something with the washing out theory.
Nightshades has been pretty easy for me, I managed to dig into a pile of deep fried sweet potato chips the other day which satisifed my building desire for hot chips.
I've also been having Zinc+C tablets for immune random days, mainly just the Centrum multivitamin and Inner Health Plus probitotic.
There are that many people saying tumeric is goood ... so far I've been ignoring that advice. But I ignored nightshades for years.. and think maybe there is something to number of reports tumeric helps.
skellitor aussie76
Posted
I am actually on Turmeric or rather Curcumin which is the important part of it. I can't say that I've noticed any change for the HS though. I started taking it because someone recommended it for HS but it actually ended up helping my with hip problems because it's fantastic for inflammation. I think that's why people expect it to be useful for HS, or maybe it's to counterract digestive troubles from nightshades? But I don't believe I've noticed a difference. It's hard to say for these things though.
It is really great for my hip and kept my pain at bay for a long time for that though. For things like arthritis pain it's really good as well and for type 2 diabetes some studies say it's up to 4 times more effective than the regular diabetes medication, so it definitely has a lot of fantastic uses.
To buy it though you need to be sure you're getting the right dosage or you can easily end up with capsules that are too weak and then you need to take loads of them in one day to get an effective dose. It needs to be standardized to 95% curcumin and must also have bioperine with it or it won't be absorbed properly. - just in case anyone decides to check it out.
kim54404 skellitor
Posted
I also heard of curcimin but also vitamin D prescription. Get tested for low D, I am low D I was diagnosed years ago and had a prescription once but can't remember if it helped my cysts or not....Either way I plan to get a blood test and go back on it. I live in the north east part of US and don't get outside much aside from spring and summer. So D is essential to the immune system and so isn't the probiotic another person recommended. I have personally been taking probiotics and noticed my skin is actually softer and intestines happier. I read 90% of the immune system lives in our intestines so if we keep them happy then the rest of our bodies will be happy. I believe exercise is essential, I too was working out regularly at one point and no flare ups....btw exercise helps hydrate and clear the pores as well as the intestines. But as soon as I stopped over a long period of months because of laziness then the popped up worse than ever. So my goal is to get my arse back to the gym, start a D vitamin, curcimin and see what happens. Mine are stage 3 at the moment and worse than ever....I'm trying to get a huge one to heal enough with doxycycline so I can get back to the gym. Oh and I'm definitely going to keep up the probiotic, it has fish oil powder in it, and no fish burps of taste like concentrated fish oil. So you are all on to something about the exercise and sweating pore cleaning naturally.
skellitor kim54404
Posted
Good to know I'm not the only one seeing the benefit of exercise on the pores. Good luck getting back to it!
I have vitamin D in my multivitamin so I'm hoping that that is enough as I live in Scotland and work at night so there is literally no sun in my life haha. Our summer lasts about 3 days and I think we already had that back in May, it's back to being rainy and miserable again.
A probiotic seems like a good idea, the only problem is that the supplements all get very expensive. If I find a good way of doing it on the cheap I may give it a go.
I'm on doxycycline at the moment for the same reason so fingers crossed for both of us!
sarah77472 skellitor
Posted
Hi Skellitor
I'm new to the group, I've had HS for what I now know to be about 15 years. As with a lot of people in the group I was initially told they were cysts and that 'I was prone to them' by various Drs. One Dr told me that it would ''go by the time you are 40' but I am now past that milestone and it remains and is far worse. Riddiculous in this day of technology and communication that I accepted this and didnt look further. I remain apalled and amazed that I allowed myself to remain so ignorant.
Its started on my upper inside of my legs and then my armpits.
Two years ago a newly qualified Dr told me I had HS and was very matter of fact about it as though everyone should know. I dont think he realsied just what an impact this had on me having an explanation / name for my condition. By this point I was already at stage three and have been prescribed Erthamycen and now Oxytetracycline. I now have the lumps in my groin and also on the underside of my breasts both of which have massively affected my moral and self esteem. I am a great beliver in 'helping oneself' so have recently had a hard talk with myself and am trying to get back some control. Your commentson sweating are really interesting, I dont sweat at all really (unless at night!) and when I'm down and have a flare up I am less likely to exercise but now feel motivated to do something. I am also going to have a decent discussion with my Dr as I have always felt a bit marginalised and never really pushed my case forward. So many things are ringing bells now....onwards
thank you
Sarah
skellitor sarah77472
Posted
Hi Sarah!
That is exactly what I was told. I mean EXACTLY. My first (read: terrible) GP told me that they were just lymph nodes, but when I was finally actually diagnosed, maybe two years later, I was told that I was prone to getting cysts. That was literally all that they told me. They treat the cysts when they pop up but for some reason GPs have no intention of talking about how or why you get them or how to prevent them. Which, considering that I have a national healthcare system in the UK and repeated rounds of antibiotics can't be good for them or me, either financially or medically, it's really absurd that they don't do more. The more that I hear people saying that this is what they were told, the angrier I am about it.
The only reason that I found out about HS is because I googled it and eventually found it. If I hadn't done that I probably never would have been told. I've had doctors actually look surprised when I say the words "Hidradenitis Suppurativa" because they don't even expect me to know. I find it truly appalling that they thinks it's okay not to clarify their diagnosis. It separates us from the wealth of information that is available on self care that we aren't going to get from our doctors, and from support groups like this. Don't blame yourself for this, it's your doctors who failed you, as they have done many, many people with HS. You are absolutely not the only one that didn't look for a specific answer, and it's not always very easy to find an answer through google since it gives you many possible answers.
All of my comments on sweating are purely speculation because I've never seen anyone else mention it, but I have had doctors and specialist dermatologists nodding and agreeing with me when I spoke about how effective it's been for me. I also have a degree in anatomy so I know some of how the body works. I think that if we are prone to anything, it's not that we're prone to getting cysts, it's that we're prone to getting blocked pores which causes the cysts. Before I get a big outbreak I can see and feel that my pores in my underarms and groin area are blocked with a kind of thick goop (which someone else I know with HS has spoken to me about before too) that can come out if you squeeze it. I think that it's from slowly secreted sweat that lies on the skin and clogs the pores when it's dry. It could either turn thick when it's dry or clog at the surface first and the sweat no longer has an escape channel so it builds up, compacts and clogs the pore which then causes the inflammation in the hair follice deeper down. Sweating profusely, like in exercise, opens the pores and washes them out. I like to use sweat-wicking clothing to make sure that the sweat isn't just layering on my skin or being soaked up by cotton clothing like it usually is during my day.
If you think about it, we spend so much time trying to stop our pores from being actively blocked by things like antipersperant. They are known to cause an increase in cysts because they block your pores and decrease sweating, so doing the opposite can only be beneficial.
This condition requires a huge amount of self-care, so I'm glad that you've found it's name and are looking for ways to improve it.
Many people seem to have had great success with a nightshade free diet, which I haven't mentioned above because I've never tried it. I like my nightshades too much! But if it's particularly bad for you, you could give it a go.
In the past I've printed off the 'treatment' page of the HS Trust website to show to my doctor when some of my antibiotics stopped working. I've tried Oxytetracycline and it didn't work for me. Flucloxacylin has stopped working too, so now I'm on Doxycyline which my dermatologist prescribed. He said it's like a stronger version of the oxytet. The HS Trust website is good to flick through in any case.
All the best!