The dreaded HS flare…

Just when you think you will get some relief, and usually out of nowhere, hidradenitis suppurativa can flare up. There never seems to be much rhythm or routine to my HS flares, although I can link some of them to stressful life events. The HS flare I’m going to talk about today came out of nowhere.

I’ve had multiple surgeries to remove HS from different areas of my body. My left armpit was one of my most successful surgeries. I had it done in 2014, along with excisions of HS on my labia and a groin flap procedure.

Prior to the surgery, I had been given a 4 week course of Ertapenem, an IV antibiotic, that reduced the HS lesions quite a lot, so the parts being removed were smaller.


My armpit was stitched up, and after about 7 weeks, It was healed.
It didn’t give me much trouble after the surgery, only a few small nodules here and there, nothing too hard to manage.
So it has been almost 6 years since the surgery and for the most part, all had been well. But we all know HS comes and goes as it pleases, and so in April this year, my good arm turned bad!

Day 1 of an HS Flare

It started with a pain, that deep seated pain, that you know means trouble. I was praying it was just a little nodule, but this one felt deep under the skin and I couldn’t find the usual lump, it just felt very sore and tender deep in the skin. My temperature went up and I started to feel very unwell.

HS Flare beginning
You can see the little red area, just above the surgical scar. It looks innocent enough, no one would think this is painful. But it was. And it just got worse and worse.

HS Flare Evening
Things progressed quite quickly and by the evening, it was swollen and inflamed. At this point, it’s difficult to move my arm, or even to put it down. I have to hold my arm in a certain position so it doesn’t hurt. Doing this for prolonged periods of time can cause muscle pain, that affects the back and neck, so I try to sleep in a comfortable position with my arm supported by a pillow.

Day 2:

The next morning it is even worse. Swollen, sore, and inflamed. The surgical scar is stretched and feels like it will rip open. It’s so painful, I instantly take some medicine for relief and have a salt bath.

I am working from home today and I keep the pain relief topped up throughout the day. I get what I need to do done as quickly as I can and then I rest in between tasks. I’ll have another salt bath before bed and I’ll sleep with my arm propped up again.

Day 3 of an HS Flare :

I wake up with a sore back and neck from sleeping in a funny position. I didn’t sleep well at all, and I have to get up for more pain relief during the night. HS can affect so many parts of your life, and it can interfere with your sleep routine, contributing to the feeling of fatigue and malaise I already have. The flare is huge now, and although I have had similar flares before, I am starting to worry because my temperature is high and I feel so unwell. It’s time to call the doctor.

 

The doctor examines me and gives me a prescription for an antibiotic and some stronger pain medication. I start both immediately and go home to rest. I have to take the rest of the day off work, I’m too unwell to concentrate and need to sleep.

 

Day 4:

I am up early, in pain again so I take more pain relief. My temperature is normal for the first time, and I am starting to feel less “fuzzy”. It’s hard to describe the fuzzy feeling I get when I have a bad flare. It’s like a fogginess in my head, and heavy limbs so it’s hard to move about as usual. I am just about to start getting ready for work and I feel a wetness in my armpit. It can only mean one thing… the flare has started to drain! The relief is short lived as I realise it’s not going to go all at once, but will take a few days of constant draining until it calms down.

 

Day 5 – 14

These few days go on and on, and the HS flare keeps filing up and draining. It is so sore and completely exhausting at this stage. I am literally drained! But I keep on with my routine. Pain relief and salt bath in the morning, work until lunch, pain relief again, get through the rest of the day, salt bath before bed, more pain relief, sleeping and resting as much as I can.

Sometimes, I’ll go for a short walk if I can, and I make sure that I am eating well – wholesome and nutritious food. I am using my HidraWear dressings now to manage the constant drainage.

Using HidraWear

Day 15

Finally it is calm. And innocently shrinks away as if nothing had ever happened. It left me with a small scar, that looks so tiny you would never guess it was the source of so much pain. This flare up was particularly bad, but eventually I got it under control.

Trying to manage a HS flare can be such a drain on my day. But I try to stick to my routines, and stay as well as possible. Sometimes, I can’t do it alone, and I need medical assistance. It’s so important to know when to see a doctor, I have learned my own threshold over the years, but the minute I know something isn’t quite normal for me, I book in to see a doctor. Our health and wellbeing is so important, I would urge anyone struggling with their HS flares to seek medical attention.

 

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About The Author

Suzanne Moloney, CEO and Founder of HidraMed Solutions

Suzanne Moloney has had HS since she was 13 years old, and so she has made it her life’s work to improve the lives of people with HS. Due to her own struggles with HS and wound care, she founded HidraMed Solutions in 2016.