HDS Flare Up - Really suffering

Posted , 4 users are following.

Hi all,

So I have had HDS since I was about 15-16 along with many other skin conditions (I really seem to get them all)

Anyway recently I for some reason have had a massive flare up. So much so that I have had to go to the hospital. 

The trouble with it is there has been no real lifestyle changes that can contribute to this. 

I have a 7 month old baby at home and work 56 hour weeks however that is then supplemented with 4 days off which really benefits family life. 

But just these last two weeks I have seen around 4 abcssses start filling up and are literally about the size of a golf ball under my skin. With only the top of it perturbing above skin level. I am sick of them I genuinely cannot walk, I have dressings for them and inadine patches to put over the top. I am on antibiotics and pretty strong pain killers but even with them the pain is excruciating. 

Now due to all this limping and sitting/lying at funny angles I have an absolutely agonising spasm in my back which really isn't helping. 

What I am really asking is, has anyone else had a flare up so sudden and so bad ? 

Equally in your opinion how far advances would you think my condition is in terms of stages because the doctor couldn't really say and said I would have to be referred to a dermo but I can actually feel tunnel like things underneath my skin with loads of off shoots and they 100% connect these 4 accesses on my waist band. 

Under my arms not so much they tend not to hurt.

Any advice on relief, medications or really anything at this stage would be very much appreciated. 

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5 Replies

  • Posted

    I'm no doctor but your condition seems to be where mine was. I'd say you're a stage 3 almost 4. I was a 4. My advice is find a good dermatologist. A regular doctor won't help neither will their antibiotics. You seem to be getting worse and believe me it does. I personally don't look at lifestyle changes as being an effect or cure at this stage. I was on a combination of antibiotics that reduced the pain and inflammation almost over night. I am now on humira and I had to have surgery on my groin area. Though I still have areas to get worked on, the antibiotics from my dermatologist and the humira have made a world of difference. I was so bad I couldn't move. I now am mobile again. It's great. Contact me if you have any questions. Good luck to you. 

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  • Posted

    I totally agree with roberto. Get you a good dermatologist! I was given a series is steroid shots to help dry mine up. And they put me on doxycycline. Everything was progressing pretty good until I started back to eating food with tomatoes and potatoes and bell peppers! Hopefully it will dry up again since I have stopped. 
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  • Posted

    I am a 35 y/o woman who has suffered from HS for the last 8 years. At its worst I had 9ish large infected areas at a time. Sometimes as large as the diameter of a Coke can. I was never free of an absess. I constantly had at least one and typically 3-4. I break out mostly in the groin and thigh area but occasionally my back and underarms. I work a professional job and the pain was excruciating. I had real concerns that I would need to pursue disability because coming to work was so uncomfortable for me. I decided to do anything and everything I could do to gain control of this. I immediately obtained a prescription for Wellbutrin and Doxycycline. I was a depressed mess and I knew I needed to be in the best mental state possible to stay consistent with the changes. Also, I knew the antibiotic couldn't hurt and could possibly help. I immediately began taking turmeric daily. Just 200mg every night before bed. I began to exercise and completely changed by diet. I started out low calorie and transitioned to low carb. I cut out all night shades, just in case. I've lost 50lbs in 5 months. I was 262 lbs to start. I immediately noticed some improvement with the condition but didn't fully eradicate the episodes until I adopted the low carb diet. As a test, I ate a couple of donuts. Trashy gas station refined sugar nightmare donuts. Within 24 hours I had two abscesses forming. These were the first two in four months. I believe we all have triggers and sugar is potentially mine. I don't know if all of these steps are contributing to my success but I have to say, as long as I'm consistent, I'm completely free of the pain, sores, stress, etc. Prior to this I had tried antibiotics of all kinds, every antibacterial and recommended soaps, frequent visits to multiple Dermatologist and physicians. I still have the scars but those have improved significantly. I've read a lot of things that gave me hope that I could take control of this and I hope that you're able to do the same. Changing your life is extremely difficult but worth it if it helps to identify your triggers.

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    • Posted

      Hey BadEnglish 

      I admit I am overweight but I'm on a pretty strict diet as it is due to having several intolerances as well as having sever IBS. 

      I was just really at wits end when I wrote this. I currently now have 5 in a cluster with dressings and inadine patches on them. Every time they scan up they immediately rupture again. I presume because of the long shifts I do (6 on 4 off) I barely get much time to heal. I'm on antibiotics just now and some strong co codamol for the pain but again can't take them while I'm working because they are severely drowsy lol. 

      Believe it or not I actually find them more at ease when they are gushing of pus and blood. 

      I know that this condition affects everyone differently but I have genuinely considered trying to claim disability but I know that it's impossible to get. Again most days when in sever pain I can hardly walk and get taxis to and from work and use elevators and try to move as little as possible but as a manager in an office environment I'm never out of meetings and other things. I think I might just need to look to my employer to see if any reasonable adjustments can be made but I'm struggling to think of any other than have someone push me around in my office chair lol rolleyes

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  • Posted

    I know that feeling. I hope you find some relief or some accommodations that will help you to cope with the day to day. I can't imagine working those hours in all that pain. Best wishes.

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