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My Battle With Chronic Urticaria

I’ll never forget the day a simple rash — or so I thought— turned into a life-changing medical condition. It was December of 2014 and my husband and I were adjusting to a new life near the Canadian border in New York. Although we had moved north from Fort Lauderdale into what happened to be one of the coldest winters the area had experienced in over a decade, I’d say we were adapting quite well.

At that moment though, life had thrown some curve balls our way. While we often hear that stress can negatively affect our health, I tried to brush off how stressed I was feeling and was determined to keep plowing through the difficulties that were in our path.

Then one morning, as I was literally pulling off my pants to get into the shower, I noticed a rash on the side of my upper thigh.

I honestly had no idea how long it had been there. When the temperature is in the teens, you don’t see your skin very often — and when you shower or change your clothing, you do so in record time.

That year had marked 13 years since I was diagnosed with lupus, and though a “butterfly” skin rash can occur in some patients, it wasn’t a symptom I personally struggled with. Plus, it usually appears on the face. My lupus symptoms revolved more around fevers, fatigue, small strokes, blood clots, and things of that nature.

This rash I found consisted of small, flat, circular dots. Their cherry red color was a sharp contrast to my pale skin. Within a few hours, the rash began to spread down my leg, and by the next morning it became quite itchy and had erupted on my other leg as well. Though I had taken Benadryl, the rash continued to get worse.

Day three brought fear, as I removed my clothes early in the morning and stared at someone I didn’t know.

My entire body was covered in hundreds of massive hives that ranged in size from a pea to larger than a quarter.

Some were so large they connected to one another, creating raised patches larger than my hand. The itchiness was now combined with intense burning. I also noticed something peculiar; if I stood up to walk, if I removed my clothing and cold air touched my body, or if I stepped into a warm shower, more hives would erupt.

I had never seen anything like it — movement, sweat, cold or heat was causing hundreds of hives to explode on my skin within minutes. Patches would move around my body, erupting on my feet, butt, neck, face… basically anywhere you can imagine. Moments away from a panic attack, I called my new allergist who I recently saw for food allergy testing and told them it was an emergency.

Within an hour, I learned I was having a urticaria outbreak. I, of course, had never heard of urticaria before and didn’t understand why it was happening to me or how long it would last. Turns out urticaria can be broken down into two categories: acute and chronic. We learned I had chronic urticaria, with this particular episode lasting about eight weeks.

Understanding Urticaria, AKA Hives

The American College of Allergy, Asthma and Immunology estimates about 20% of people having urticaria, or hives, at some point in their lives. With acute urticaria, hives typically last anywhere from a few hours to days, and in some cases, up to six weeks. When hives last more than six weeks and migrate around the body in episodes, this is when they’re considered chronic urticaria.

During the eight-week period of my outbreak, I never had a single day where my skin wasn’t covered in clusters of hives.

I’d gotten hives before but not to this extent. It caused such fear because simple movements like sitting up in bed or going up the stairs triggered another eruption. There were mornings when I would wake up to my face covered in hives. I was instructed to sleep with an epi-pen set at my bedside in case the hives caused throat swelling. I won’t even discuss the extra anxiety hearing that caused me…

What causes chronic hives?

The most difficult part was trying to determine the trigger. In fact, chronic urticaria is not well understood and the time frame for each outbreak is unpredictable. Physicians have recognized some common triggers such as hot or cold temperatures, stress, anxiety, certain medications or foods, alcohol, sun exposure, and in some cases, tight clothing. Even exercise, in which nerve endings can be stimulated, can trigger an urticaria outbreak in certain people.

Our best determination regarding my case was a combination of high stress and frigid temperatures, which at night, in upstate NY, were dipping into single digits or negative numbers. For eight weeks, I felt trapped in my bed, drastically limiting my movements for fear of causing additional hives to appear.

I was under constant treatment to try to get the hives under control. Typical treatment for urticaria might include Hydroxychorloquine – a malaria medication, monoclonal antibodies, steroids, and/or immunosuppressant drugs.

I already happened to be on an immunosuppressant for lupus, so my allergist added a high dose steroid for several months in addition to two Zrytec and two Benadryl tablets per day. Let’s just say, I am thankful the drowsiness caused by the Benadryl won out over the surge of energy steroids often provide.

Living With Chronic Urticaria

Today, when I see the beginning of a urticaria outbreak, my doctor and I treat it immediately and aggressively. While the initial outbreak that winter frightened me, it also helped me gain perspective on the stressors that had been impacting me — I had a lot of time in bed to think about what had been happening in my life leading up to the outbreak.

My body was suffering as it was from lupus, another difficult autoimmune disease, and the added stress I was experiencing sent my body overboard. I made a difficult decision to let go of a high-stress journalism position and schedule time for self-care, something I wasn’t implementing in my life at all.

Today, I regularly take a long, warm bath, go for a massage, or attend a restorative yoga class to help keep my stress levels down. I am also more cognizant of proper layering during winter and how much I add to my proverbial plate.

Chronic urticaria can be a lifelong issue for some people, while others will only have one or two flares in their lifetime.

If you are interested in learning more about this type of urticaria, read my How to Treat Chronic Urticaria article.

How To Treat Chronic Urticaria

  1. In 2014 I had an outbreak of urticaria along with angeodema. I had no idea what was happening to me and why my throat felt constricted.It took 18 months to get it under control. I still get a flare up now & again but it is treated aggressively and thankfully settles down.

  2. I’ve been diagnosed with Idiopathic hives I have had hives almost a year blood test biopsies you name it nothing helps no one can figure it out i’ve been to a family doctor allergist dermatologist again you name it I feel like there’s no way out I take Benadryl every day when I get so severe I have to get a shot of steroids along with a pack of steroids that says gain weight it’s horrible I have enough mental issues this just takes the cake

  3. Thank God I am not the only one to suffer so horrendously. I was diagnosed with chronic idiopathic urticaria and angiodaema nearly 6 months ago after suffering for 12 months with flares that were getting worse every time. My latest one was 5 weeks and affected everywhere from the top of my head to the soles of my feet! My doc prescribed 4 of the one-a-day antihistamines every day. Even with that it flares and I find myself sitting in my bed with no clothes and lots of ice packs!!! We think mine is triggered by stress but we are just not sure. I also have fibromyalgia and am on numerous tablets. I experimented with cutting out various tablets that are know triggers but apart from my fibro symptoms flaring, there was no change in the hives.
    Thank you for sharing your story and tips on how to live with it. It is a lifesaver.

  4. I feel your pain! I was diagnosed with UCTD and was already on Plaquenil for years when I started getting idiopathic hives but it didn’t seem to temper or prevent the hives (worst case lasted 3 months). I contacted a physician who researches itch (Center for the Study of Itch at Wash U. School of Medicine) and he suggested Xolair. I’ve been on Xolair for a year now and it has worked wonderfully. I continue to take Allegra a few times a week but the combination has been life-altering. Good luck with finding the right kind of treatment/lifestyle changes!

  5. I had a similar problem. I would break out from bottoms of my feet to my neck. Found after zyrtec went OTC I was allergic tk something they put in the allergy meds. I now take childrens liquid with no side effects now.

  6. I suffered from chronic idiopathic urticaria for approx. 24 years (from late 1991) I took anti histamines everyday for approximately 12 years & then managed to survive by taking them every 2/3 days for the next 10 years. My urticaria was debilitating without the medication I basically couldn’t function or sleep. My urticaria began to disappear in the summer of 2015. I had started to drink Aloe Vera gel in June 2015, a very high percentage, high quality aloe product, purely for the health benefits that I had read about. By mid August my urticaria was appearing less frequently. I took my last anti histamine that month & have not needed it ever since. I continue to take my daily shot of aloe.

  7. I’m glad to know what the name is i have break outs about 3 times a month. They are so bad i can’t go to work even when i get cold i would break out or when i eat something and i notice if i worry about something it comes. But mine is so bad it comes all in my mouth even my mouth itching so bad..

  8. I have been struggling with my chronic urticaria. If I get hot I break out, tight clothes, foods and even water will cause my lips to blow up. I’ve had them on the bottoms of my feet. I went to so many specialists that had no clue how to treat this, many ER visits and it was an ER doctor and my family doctor that made me think. The ER doctor suggested that I come off all the meds but benedryl, Pepcid, and another stomach med. I only take those during a flare. My family doctor suggested non gmo foods, hoping less chemicals would help. I made the decision to move to organic foods, because it got to where I couldn’t eat anything without breaking out. Even water. Now I eat full organic foods and I don’t have the breakouts. If I’m bad and eat out, I will break out. But for the most part I feel better. My Dr believes that your health begins in the gut and it flares from there. Life isn’t perfect but it’s manageable. All the chemicals in our foods is causing us to get sick, my body just said enough! The only meds I take is my medical marijuana for my migraines and the benedryl/ Pepcid mix when I have a flare. Hang in there it gets better!

  9. Thank you for sharing your story! I have been suffering with Chronic Urticaria, for 20 years now, my first outbreak being aged around 7.

    I have been through everything! From E number allergy trials from the Dermatologists to various, creams, diets & skin tests. The result – they don’t know & will never have a diagnosis for what causes it. I’ve even been told it could even be an allergy to dust particles in the air.

    There are a few things, like having hot bath or shower, that will cause an outbreak for me. Increased by certain bath or shower gels – I now only use bath or shower gels from The Body Shop.

    Trying to explain the itchiness of Urticaria to someone who doesn’t suffer is in-explainable! Not that I would wish this on anyone, but thank god I am not the only one who suffers!

    One thing I have found that helps to reduce my itchiness is ‘Aloe Vera Gelly from Forever Living’. Like all Aloe Vera products it’s best stored in the fridge, which helps to sooth the hot, itchy hives massively.

  10. I have been plagued by idiopathic urticaria since 2001. Many doctors have tried, and failed to help..steroids were the drug of choice for years to take the edge off of it when I couldn’t walk, open my hands, open my eyes, I would get them in my throat…full body coverage, and joint involvement lasting 18 to 24 hours. Until I found an article talking about Xolair in 2014. I showed my doctor and he quickly agreed to put me on it and within hours I was clear. I can still bring them on if I over do it, but Xolair allows me to live normally.

  11. Do you have any update on your experience? I know have CU, I struggle daily with hives. I get them every single night. I only get them when I sleep. The only thing that works for me is Zyrtec. If I miss a dose, I get hives on 70% of my body. From my ankles to my neck. Intense itching and burning.

    I’m guessing there is no cure? It’s really a terrible condition.

  12. I had an outbreak like this in my teens. It was caused from an undiagnosed allergy to fish and shellfish but also the oil from fish. I had to sit in a cool bath for 3 days. I have also had recurrent outbreaks in my adult life usually during periods of intense stress and usually in areas where there might be another allergen lurking – like the elasticated bands under my bra straps etc (I also have a latex allergy) or swimming in the ocean (sea mites). Sometimes the welts will be 2 cm raised off my skin.

  13. At present, I am suffering from hives or urticaria for the last seven days. I rushed to a Dermatologist (Prof. Dr. Reza Bin Zayed) who is living in Arizona, USA gave me medications through Skype! Things are improving slowly. I am feeling better after two days of medication. In my case, it happened due to peanut better. Itching has been stopped completely. Spreading of red rashes also stopped. I am feeling comfortable now.

  14. Back in the 70’s I had what I called the 7 year itch as I was diagnosed with “delayed pressure urticaria” which meant I broke out in hives where my bra went, my belt and my feet as I worked. Heat also played a part as I would wake up with bumps on my head from heat of my pillow at night.
    My Dr at the time I was one of 100 people on the books with the delayed pressure urticaria. It took about 6 1/2 years and finally disappeared

  15. Three years with this and finally I traded in all the meds for pureed organic foods and Digestion Plus by Arbonne. If I do eat out I choose fish and veggies and chew very, very well.
    It turns out that my bad habit of eating too much too fast was causing the hives. It created a backup in my digestion which my body considered a bad condition and reacted to it with hives.
    Hope that helps

  16. I lived with chronic urticaria for 1 year. Did all tests and tried almost everything starting with cortisone, going through acyclovir and ending in alternative therapies. There were very few information about this disease and it was a very difficult experience. Long story short, when I finally understood that there is almost no info about how this disease shows up and how it disappears, it was like a revelation to me. I understood that I (my mind) was the source and I started a few months process of healing myself. Because I was in the woods, I started from scratch with my own concept breathing and visualizing exercises, so in 4 months I was clear of urticaria.

  17. Hi Marisa,

    You have mentioned that you had an episode of Urticaria in December of 2014 which lasted for 8 weeks. Did the hives go away after 8 weeks? Do you still have hives after 4 years?

    Thanks a lot,

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