Warning: the photos within may be disturbing to some… skin condition that I had for about 8 years that was never fully identified, can you help identify it now?
Back around 2013 or so, I developed a skin condition that devastated my life! No doctor or dermatologist ever fully identified this condition, nor was fully effective treatment ever provided by dermatology. I saw multiple dermatologists at a Big 10 University Medical school, and they all were stumped. Finally a doctor from another discipline treated it on a hunch as an obscure infection and about 90% of the lesions cleared.
Here are some pictures taken at the peak of this rash.
These lesions first appeared in the summer of 2012. I live in Minnesota where we call mosquitoes our state bird, and I loved to garden.
So when these first started showing up I thought it was a bad year for mosquitoes! But it soon became obvious that they had to be something else. If they were bites then old lesions should heal and then new bites should make new lesions. But that never happened as these lesions never healed. Once one existed, it stayed present in the same spot for years. I only had them on my arms, my upper back, the nape of my neck under the hair line, on my left butt cheek, and on my left facial cheek. I was in my late 40’s when these first appeared and I was being treated for severe spine problems. I had been diagnosed with Scheuermann’s Kyphosis and had gone through a couple spine surgeries at this point including a C4-5 ACDF that almost immediately failed causing adjacent segment degeneration. So I had a C3-6 ACDF that the bone grafts failed to heal at C3-4 as well as at C5-6. The scars from those surgical incisions were prone to developing these lesions which I found to be quite odd. Occasionally these lesions had a burning sensation to them. They were raised, dry, rough, and hard. They did not itch, and I only very rarely scratched them. I was off of work when they started due to the spine surgeries. I had 2 hobbies that I thought could have brought on these lesions somehow. First I loved growing flowers! I had a 6 ft tall cedar fence enclosing my back yard, and I would grow climbing roses up that fence, each vine anchored by a clematis that would grow up and around the rose vine, anchoring it to the fence in a beautiful way! Rose vines of course had thorns that would scratch my arms up badly. But that didn’t seem to be related to these bumps. I had another hobby too, this one involved a special, self supporting aquarium in my family room. This tank was its own closed ecosystem. It had a real soil substrate and was fully planted with herbivore fish that were sustained by the plants. I had full, natural spectrum lights encouraging the plants to grow healthy, and I bubbled in CO2 to the tank as a source of carbon. The Discus fish that ate the plants would provide nitrogen to the tank, and it was a really beautiful tank if I do say so myself! I thought nothing at the time of coming into the house after tending to the roses in the mornings and plunge my freshly scratched up arms into the fish tank to replant the plants knocked loose overnight by the fish as they fed.
Where these lesions really affected my life though was in the reactions other people used to have upon noticing them. Wow, can people be mean! I would step onto an elevator, watch people notice my arms, and then trip all over each other trying to exit the elevator as fast as they possibly could! I had a neighbor ask me to help her fix her computer. I told her sure, and went to her place, but when I tried to sit down at her computer to start working on it, she stopped me and told me I wasn’t allowed st sit at her computer desk as she was afraid I would contaminate her workstation! I told her to call a repair man and I left! My husband and I went to Hawaii on a “second honeymoon” but whenI tried to enter the pool at the resort everyone else exited the pool. I was so humiliated. This rash cost me my marriage. Honestly, that was no big loss, but my husband was so repulsed by this skin condition that he divorced me! I could go on and on, but it all boils down to a tremendous amount of emotional pain. My self esteem was destroyed by the way I was treated over this rash. And no one had a clue about how to treat it. Here is one more little bit to think over. My back as mentioned was in terrible shape. I’ve been plump most of my life, and to ease the load on my back I had a gastric bypass done to help lose excess pounds. These procedures make it hard to absorb nutrients and calories from the food that one consumes. After a few years, some deficiencies can develop. I happened to develop a vitamin C deficiency otherwise known as scurvy how and why that may or may not play a role in all this I don’t know, but it’s worth mentioning and thinking about as people were scurvy do end up with weird rashes.
The last little tidbit has to do with when I contracted severe Covid in 2021. I spent three months in a Covid ICU in a big university hospital and I nearly died! But once all was said and done and I was being released from the hospital after having successfully fought off Covid, this rash that I had had for the previous eight years was pretty much gone! It might be coincidence maybe something I was given for the Covid helped with the rash I don’t know and neither do my doctors. But I was glad to see it gone. Let me tell you!
There’s no medical provider who has ever given me an answer as to what exactly this was on my arms and body parts. If any of you out there, have any ideas about what you think it might be I would love to hear them! There was one infectious disease doctor who did go ahead and treat these bumps and they seem to respond to that. I had that treatment right before I got Covid. I don’t know if that’s what triggered it getting so much better or not but I tend to give her the credit. To make this more fun I’m gonna hold off a few days before I tell you what she thought it might be and what it was treated with by her because I’d love to see if someone else comes up with her idea as well.
Finally, as my mom always said “if you can’t say something nice, then don’t say anything at all!” I have been deeply hurt by some people’s reactions over the years to my rash. You are welcome to speak openly and honestly about the pictures and story I’ve shared, but try to keep kindness in mind too?
Thanks all!