When I developed a red itchy skin rash, I wasn’t sure what it was. Almost 2 years later, I’m writing about it. This is my story of being diagnosed with allergic contact dermatitis, and accepting my adult onset allergy to fragrance, formaldehyde and imidazolidinyl urea.
I’ve been thinking about writing this post for so long. Eight weeks to be exact. That was the day my body sent me a big warning sign. The day I needed to make a big change.
As a dietitian and healthy living blogger, most of my posts are about food, nutrition and fitness. I also share some of my travel experiences and write about food culture, too. But, this post is different. This is a personal post about being diagnosed with allergic contact dermatitis as an adult.
I’m sharing my story for a few reasons. One is because I look different, and I don’t want people to wonder why. Sharing also helps with my acceptance. The other reason, though, is to bring more attention to this, and to help others. I was shocked when I learned how many people develop allergic contact dermatitis as an adult, and reading personal stories helped. My plan was to write one post, sharing the story from the beginning to today. But, six pages in, I decided it would be better to split the post into two parts. This part, part one, is the story of how I was diagnosis and my journey accepting that I need to make changes. Part two is about removing the allergens, and making my biggest change of all. This post is long, but it’s my story.
The Beginning – 2 Years Ago
It was October, 2018 when I first noticed a skin rash. I developed a small, circular mark on the back of my neck. I honestly didn’t think much of it at the time. It was bumpy, and became itchy at times, and sort of resembled ringworm. I had ringworm on my leg when I was a kid, so I knew I was prone to getting it. I bought an over the counter anti-fungal cream and applied it twice a day, per the directions. A week later, it was still there.
I finally decided it was time to see the dermatologist. The first available appointment wasn’t until the 3rd week of December. I scheduled it, and didn’t think too much of it. The rash wasn’t getting better, but it wasn’t spreading, either.
When December came, I realized I had to change my health insurance. My premium was going to increase by over $100.00 a month, so it was time to shop around for different coverage. I found an affordable plan with a different insurance provider, but switching insurance, meant finding all new doctors. I cancelled my dermatology appointment, and decided to wait until the new year to find a new doctor.
My rash was still present, but it wasn’t getting worse. Brian and I went on vacation to Belize the week before Christmas, and I remember thinking that maybe the hot weather would make it disappear. It seems silly to think that now, but at the time I was totally serious. Unfortunately, it didn’t.
I spend the first week of January, 2019 finding new doctors, including a new dermatologist. The first available appointment was February 4, 2019. I was anxious to get rid of the rash, but it had been so long, a month didn’t seem too long.
About a week later, I noticed another skin rash. This time it was on the left side of my neck. It had the same raised, red bumps as the one on the left, but it wasn’t circular in shape. The big difference was the unbearable itch. I tried not to touch it, but I could not stop scratching it. Over the next few weeks, the rash progressed. It began moving down my neck, and wrapped around toward the front. My ear lobes developed bumps, and the area around my hairline was red and itchy. I also started noticing small raised bumps on other parts of my skin. My lower back, forearms, chest and lower stomach. These bumps would come and go and did not appear to be the same as the rash on my neck. Still, I couldn’t help but think they were related.
It was around that time I started to realize, my skin had been itchy for a very long time. I was thinking back to the summer of 2018, when I started finding small, random bumps on my lower back. That was also the time I started taking my bra off as soon as I finished work, because it was so uncomfortable. I also dreaded wearing something I had worn daily since I was a teenager – a sports bra. Wearing one made my back itch. It finally hit me that this had been going on for months, maybe even a year. I was so thankful that my dermatologist appointment was only a week away.
First Dermatologist Appointment – February 4, 2019
I remember this appointment so clearly. I couldn’t wait to show the dermatologist my rash, tell him about my itchy back and get some answers. I should have known it wouldn’t be that simple.
The doctor examined the rash and told me it appeared to be eczema or some sort of allergic contact dermatitis. He prescribed me a steroid cream, and instructed me to apply it to the rash twice a day. I was to only use a small amount, and to wash my hands thoroughly after I used it. Apparently, it’s very strong and can cause damage, especially if it gets into eyes. The doctor said it should be cleared up in a few days.
I wasn’t satisfied. My neck rash wasn’t the only issue; I wanted to know why my skin was so itchy. I showed him the few random marks on my back and asked him what I should do about the itch. He suggested I try an over-the-counter allergy medication, then he told me to schedule a follow-up if the steroid cream didn’t work. He was highly confident that it would, though.
I left the appointment feeling disappointed. I should have been glad it was just an allergic contact dermatitis, but I wasn’t. I wanted a better name for my rash, and I wanted to know exactly what caused it. I drove straight to the pharmacy to pick up my steroid cream. I did not buy the allergy medication.
The dermatologist was right. Two days after my appointment, my rash was practically gone. I was in shock over how well the steroid cream worked. It was like magic. I applied a small amount to the bumps on my back, too. My skin cleared, and I was itch free for the first time in a long time. It’s funny how you get used to feeling a certain way, and that becomes your normal. Itchy skin is a sign, though, and shouldn’t be ignored.
After this incident, I started to pay more attention to my skin. I realized I was having more issues that I realized. I was scratching my skin constantly, especially my back and forearms.
On February 14, I went back to the dermatologist for a follow-up. The rash on my neck was completely gone, but I wanted to know what was causing my skin to react. The dermatologist suggested I have a patch test to try to identify specific substances that could be causing an allergic reaction. I was on-board, and scheduled the test for March 11, 2019.
The next month was more of the same – random red bumps and itchy skin. By that point, I was very in tune to it. I realized what I was feeling wasn’t new. My skin had been reacting to something for close to a year. I tried to figure out if it was getting worse, or if I was just more aware. I think it was a combination of the two.
March 11, 2019 – Patch Test
The day finally came to have my patch test, and I was not looking forward to it at all. Once the patches are placed, you have to keep them in place for at least 48 hours, and you can’t get them wet. I sweat a lot when I exercise, so no sweating meant no workout until they were removed. As silly as it sounds, that was my only issue with getting the test. My morning workout is my me-time, and something I really look forward to. It was three mornings that were disrupted. Looking back, it seems like nothing, but at the time, I was not happy about it.
I won’t get into the details of the patch test, but if you’re interested, you can read about it here. I had the patches applied Monday afternoon, then returned on Thursday morning to have them removed. Finally, I had some answers!
March 14, 2019 – The Diagnosis
The dermatologist seemed surprised by the findings. The testing showed that I was allergic to three of the substances tested – fragrance mix, formaldehyde and imidazolidinyl urea. The reaction to imidazolidinyl urea was milder than the other two. I had a severe reaction to fragrance and formaldehyde. The doctor told me that I am so sensitive to those substances, if my skin comes in contact with any one of them, just one time, I could develop a rash. He further explained that the itching and small bumps can appear within 4 hours of exposure, but they typically don’t appear until 1-3 days after. That means if I get a rash today, it could be from something I came in contact with days ago. Even worse, he told me that most skin reactions caused from these substances will last for 2-8 weeks, even if I was careful not to come in contact with them again. And, if I have multiple exposures at once, it could take 3-6 months for my skin to completely heal.
As someone who had never had any allergies in her life, this was hard for me to understand. How could I just now develop allergies? Why did I develop them? It’s so hard for me not to have these answers. Every time I asked, the answer was the same – allergies develop from repeated exposure. Basically, I was exposed enough times to these substances that I became sensitive to them. The most difficult statement to hear was this one – “Your body has changed and you will be allergic to these substances for the rest of your life.” Ugh.
The Good News
My dermatologist felt really bad for me. He told me I’d have to avoid all exposure to fragrance and formaldehyde. He gave me the cliff notes on all three allergens. “Fragrance is in just about everything”, he said. He discussed the obvious products that I would need to change – my shampoo, conditioner, perfume, soaps, cleaners, laundry detergent and makeup, then moved to all of the cross-reactions I should avoid – cinnamon, cloves, cassia oil, citronella candles, and the list goes on.
Next, we discussed formaldehyde. He shared what it is and where it is found – fabric, building materials, carpet, paint, paper products, etc. Then, he reviewed all of the alternative names for formaldehyde that I would need to be aware of – formalin, methanol, methyl aldehyde, methylene oxide, and the list goes on.
The third reaction I had was to imidazolidinyl urea. This substance is a formaldehyde- releasing preservative used in many cosmetics and pharmaceutical preparations. I should avoid burn creams, sunscreen, prescription topical medications, and just about all makeup. The crazy thing about this one is that it’s not a common cause of contact allergy, so it is the preservative often used in products labelled, “hypoallergenic.”
Through all of that education, I couldn’t help but feel relieved. One of my biggest fears was reacting to PPD, or p-Phenylenediamine – the active ingredient in hair dye. I was born with black hair, and I’d had it my entire life. It was part of my identity. I was only ~32 years old when I started to notice some stray grays. I let them go for a while, but when I was ~35, I started to cover my roots. In recent years, I started to dye it more frequently.
I had been noticing burning and itching after I dye it. Nothing extreme, but my skin definitely didn’t like what I was exposing it to. Still, knowing I didn’t have a severe reaction to PDD made me feel better. I could live on with black hair, which was the one thing I cared about most. At least I thought I could.
Change Takes Time – Apparently A Long Time For Me
When my appointment ended, I took my list of “safe for me to use” products and went home. I didn’t review it right away. Looking back, I can’t believe I didn’t dive into the list. I’ve always been a person who researches things to the fullest. And, I’m definitely not one to turn away from change. It wasn’t like me to put the stack of papers down on my desk and walk away. But, I did. And, it got buried.
Over the next few weeks, I made some changes. The first change was my laundry detergent. I found a new fragrance-free shampoo and conditioner and ordered new dish soap, too. It wasn’t all of the changes that I would need to make, but it was something. I was back and forth on whether I noticed a huge difference. Some days I didn’t itch, but other days I did.
Skin Rash – Take Two
I should have known it wasn’t over. Looking back, it was really only the beginning.
A few weeks after my appointment, I developed a skin rash on my right forearm. This time, I knew it was an allergic reaction. The itch was unbearable. Scratching it felt great, but then it would just itch more. Within a few days, my entire forearm was covered. I called the dermatologist to see if I could use the steroid cream on my forearm. He told me to use it, but reminded me to use it sparingly, and wash my hands well after applying it.
The steroid cream made it feel better, but it don’t work as well as it did on my neck. I realized that the cream worked by drying out the rash. As the bumps dried, they would develop a scab over them. The bumps, however, were still itchy, and scratching them would cause them to break open. Then, the healing process would have to start all over again. It was horrible.
My First Wake Up Call
Over the next week, I had something new happen. As the bumps on my forearm were healing, new bumps were occurring. They were the same red bumps I had developed on my neck, but this time, things were different. There were more of them, they were spread out, and they were more pronounced. My entire arm was itchy – even areas that didn’t have any bumps. Next, I noticed clusters of them forming on my left forearm and single bumps started to appear on my stomach.
My back became covered in small red bumps and the itch was intense and constant. I was irritated and uncomfortable all the time. The fact that I wasn’t getting a good night’s sleep wasn’t helping.
By the end of the week, my upper body was covered in red, itchy bumps – some scabbed from me scratching them open, and others were new. The rash stretched from ~2 inches below my belly button up to my neck line, and covered the sides of my face. It was as if my body had had enough of something and couldn’t stop reacting. I just didn’t know what it was.
I took pictures of my skin so that I could uploaded them to my health portal. Looking back, I wish I had taken more photos. Sharing images of my skin wasn’t even a thought back then. I would have taken better pictures if I had known I was going to be sharing them with the public.
I uploaded the photos and sent them to my dermatologist with a message asking for advice. It was a Friday, and I was nervous he wouldn’t get back to me before the weekend. I sent the photos to my primary care doctor, too, hoping she would help. I even sent them to an autoimmune doctor, asking if he had any insight. I thought maybe my skin issues were related to a rare auto-immune disease?
My dermatologist was the first to get back to me. He sent two prescriptions in to the pharmacy – one for the areas on my face; the other was for the rest of my body. He instructed me to apply the steroid cream to the rash. That made me so nervous. It was the same steroid cream I was told to use sparingly a few months ago, but now I was supposed to be used over my entire body. I didn’t have a choice. My rash was getting worse by the day, and I was afraid of what would happen next. He told me not to worry, and scheduled me for a skin biopsy the following Tuesday.
I picked up the prescription right away. I showered and washed my hair with my odorless, free-from-everything products, then I applied the steroid cream over my entire rash. I was afraid to touch anything, especially because I hadn’t spent enough time figuring out my formaldehyde allergy. It’s in so many products – like clothes. I had read that clothing made of 100% cotton generally contained less formaldehyde than some other fabrics, so to minimize my chances of exposure, I put on an old white cotton tube top and old white cotton shorts. I wore that same outfit the entire weekend. I applied the steroid cream morning and night throughout the weekend. By Tuesday morning, my rash was significantly improved.
April 30, 2019 – Skin Biopsy
The following Tuesday, I went in for a skin biopsy. My dermatologist was relatively confident it wouldn’t tell us anything new, but he did the procedure, anyway. The biopsy was done right in the doctor’s office and was really uneventful. It was scheduled at 10:00 am, and I was on my way home by 10:30.
That Thursday, we left for Florida. My daughter’s cheer team made it to the ultimate competition in Orlando, so we had a big weekend ahead. I didn’t think about my skin, rashes, allergies or anything related during the entire trip. That is, until Monday morning. It was our last day in Florida, and our flight didn’t leave until 6 pm, so we decided to hang at the pool. Around 11:00, the doctor called me to share the results of my biopsy – allergic contact dermatitis. The exact diagnosis he gave me, at my very first appointment.
That was my wake up call. I learned what happens when you ignore a skin rash related to allergic contact dermatitis. I vowed never to let my skin get that out of control again. It was time to dive into the research and learn how to live a fragrance and formaldehyde free live.
I’ll share the next part of my journey – learning to live fragrance and formaldehyde free – in my next post. I’ll also share my other big health scare related to allergic contact dermatitis – the one that forced me to make the biggest change of all.