To manage my HS I see a wound care physician, an immunologist, and an internal medicine doctor. I struggle to manage my HS because I have multiple drug allergy syndrome, and I can’t take a lot of the medications that are used to treat both HS and infections. The immunologist and I are currently working together to find out which antibiotics I can take. So far, we’ve established that I can take daptomycin infusions and they work to treat my MRSA infections. I also take Spironolactone, which helps slightly.
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There have been a few challenges I’ve encountered dealing with HS. Things like losing friends and family… they either didn’t want to believe that I was in too much pain to hang out, or threw my “laziness” in my face. They refuse to understand the fatigue that goes along with a bad flare. I also have to wash my hair by bringing my head down to my hands. I can’t lift my arms to do it the “normal” way, because the scar tissue is so tight and it feels like it could tear at any given moment.
I was 16 when my symptoms started, and it took another 9 years to get a diagnosis from a Nurse/Midwife. I only suffered a couple small stage 1 flares on my inner thighs ages 16 through 24. When I became pregnant at 25 the HS began to slightly worsen. That was when I was diagnosed by my midwife.
I was 15 when my symptoms started, and it took 2 years before a Plastic surgeon diagnosed me. A few years back, I had to quit my job at a poultry plant after 13 years because HS prevented me from having a physically demanding job. In addition, I was burned out from being in pain 24-7.
The pain from HS I’d describe as severe. I take ibuprofen and it eases the pain off a little, but with the constant burning, it really doesn’t help it at all. There are several challenges I’ve encountered living with HS. I don’t have much of a social life and definitely not having a relationship. The constant pain, drainage, and odor cause me not to date at all.
Before I knew I had HS, I’d arrive in hospital and have my “boils” lanced and packed, resulting in missed work and a long healing process. The pain from HS Disease I’d say was agony; it’s the kind that stops you dead in your tracks. There is also the constant worry when you have an active sore of what happens if it breaks and blood is everywhere? I’ve been in that position and it was taxing, to say the least.
I was 17 when my symptoms started, but it took another 6 years to get my proper diagnosis from a doctor at a family practice. She was an amazing doctor who knew what it was at first sight. I work in Human Resources, and for a while HS affected my ability to do my job. I was unable to move my arms without pain. I could barely get myself dressed for work or move my computer mouse because of the pain. It would cause tingling in my arms from pressing on nerves. I’m happy to say though, that is no longer the case!