My body was covered in painful hives for months

Chronic hives left Irine Polyzogopoulos unable to work, exercise or have a social life. But the alienation she felt led to something greater.

Irine Polyzogopoulos on what it feels like to live with chronic hives

Photo, Reynard Li.

A year ago, I was 38 and healthy and had just taken a leap in a whole new direction in life, leaving a safe job in admin to pursue a career in corporate communications. Everything was going great until I woke up one early-winter morning to find patches of itchy, painful hives on my left elbow, right knee, left eye and right ankle.

That was just the beginning: Over the next few days, the hives continued to spread, and soon they covered 75 percent of my body. For five months, they were everywhere: my face, my palms, the soles of my feet and even deep inside my ears.

The sensation was unlike anything I had ever experienced. As the hives emerged, the area around each one felt hot, both to the touch and under the skin. And they hurt like a bruise, but with an itch so deep and so intense it didn’t matter how hard I rubbed them — relief lasted only 30 seconds.

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It felt like I spent every waking minute scratching them, and I had no idea how to explain them to concerned colleagues. Finally, after several days, unable to concentrate on anything else, I made an appointment with my doctor. I haven’t been back to work since.

My official diagnosis is chronic idiopathic urticaria (CIU). Translation: I am suffering from chronic hives. Doctors tell me the hives are autoimmune in nature — a response to my body attacking itself — and that they could persist for a few months, or a few years.

One percent of the population suffers from CIU. Of that, I’m one of the 50 percent who get accompanying angioedema (swelling) of the hands, feet, lips and eye orbits. And one of the 40 percent who experience delayed pressure urticaria, which means if I wear fitted jeans or socks with snug elastics, I get painful hive formations around my waist and ankles the next day.

Irine Polyzogopoulos on living with chronic hives

“People everywhere — cashiers at the grocery store, nurses at the hospital — would ask if I was contagious before touching me.”

The medical specialists I saw told me—a bit too casually — that CIU is generally viewed as nothing more than a nuisance, and I just need to grin and bear it. Early on, I was waiting to see an allergist and overheard him say to his student: “Up next is a case of chronic idiopathic urticaria — good luck with that one.”

My diagnosis didn’t bring relief; I was angry. CIU changed my entire life practically overnight. It took away my health, my job, my ability to exercise, the clothes I could wear, my social life and my faith in making plans for the future.

People everywhere  —  cashiers at the grocery store, nurses at the hospital — would ask if I was contagious before touching me. While this made me feel alienated, deep down, I didn’t blame them. Thankfully, my family and friends were relentless in their love and support. They knew my hives weren’t contagious. My mom and my little nieces were often the ones who applied cooling lotions and balms to my body.

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As with many autoimmune conditions, there is no cure, only medications to ease the symptoms. I was initially prescribed two types of prescription-grade antihistamines for the hives and an antidepressant to help combat the emotional toll. The antihistamines left me in a constant haze of sedation. Naps morphed into three-hour sleep sessions, and then I’d feel guilty about how little I’d accomplished that day.

To distract myself, I tried writing, making jewellery, listening to music and sifting through my Instagram feed, swooning at photos of the American desert, a place I hope to drive through one day. Other times, I would just sit and zone out, or cry.

One night, a few weeks after the hives started, they got really bad. I was completely covered from the shoulders up, with swelling in my lips and cheeks and around both eyes, but because I had been told time and time again that this was my new reality, I didn’t go to the hospital until the morning. It turns out I was experiencing anaphylaxis from the CIU. The doctors told me I was lucky my throat hadn’t closed up.

When I got to the hospital, I was given a high dose of corticosteroids, which gave me mood swings and heart palpitations. It took five weeks to slowly taper off them; their effect, combined with the sedation of the antihistamines, made me feel drowsy but pumped at the same time. It was an unnatural sensation I wouldn’t wish on my worst enemy.

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CIU hasn’t been extensively researched, so very little is known about it. On the advice of my allergist and immunologist, and desperate for anything that might help, I tried a diet that  eliminated all foods that provoke a histamine response in the body, such as tomatoes, alcohol, pickled foods and smoked meat. After three months without improvement, I sought out a functional medicine expert who suggested I eliminate gluten, dairy, alcohol and sugar from my diet.

This wasn’t easy for me to process, mentally; it was hard to fathom undergoing another major change. But tests had revealed some significant food sensitivities and deficiencies, and while there was no guarantee the dietary changes would help, I had to give it a shot. I had to have hope. Hope is everything. “Day by day” became my mantra.

After a few weeks, I started to see small improvements. I started to wake up to slightly fewer eruptions. At first, I thought it was too good to be true and I must be imagining it, but as the weeks went by, the hives kept decreasing, and I am now back to being basically hive-free.

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It’s unclear exactly why they retreated, and I know they could return at any time, but I’ve learned to truly appreciate living in this moment. My energy level has improved and I feel ready to return to work. Through this process, I learned that I’m more resilient than I thought I was, and as a result I fear very little in life anymore.

I choose to believe that CIU happened to me for a reason. The large, heart-shaped hive that appeared on my thigh one day reminds me that I have the opportunity to come out of this an even stronger, more empathetic person than the pre-CIU me.

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18 comments on “My body was covered in painful hives for months

  1. My daughter his experiencing this same hives breakout for two years now, she is 12 and it is heartbreaking.


    • Please ask your doctor about treating your daughter with sulfasalizine. It is an anti-inflammatory that may help. It helped me, after enduring seven years of daily outbreaks and a whole checklist of failed treatments. Good luck to your daughter, I can imagine how rotten things are for her.


  2. If you are from the GTA area, get in touch with Dr. Gordon Sussman. He is the best. I suffer from Hereditary Angioedema and he has helped me big time.


  3. Seeing the integrative medical doctor was a very good step. Consider a naturopath and further detoxing of your environment, too. See this website: Amanda Naturally for some ideas on creating a clean detoxed environment. Dairy is a really big item on the sensitivity and allergy list. In my case there are allergies to whey and lactose I get anaphylaxis- but not casein.


  4. In June of 2015 I started experiencing the same symptoms which progressively got worse and was diagnosed the same as Irene. I joined a facebook group for people with chronic urticaria which made feel good in that their were others out there and even more depressed as some have been suffering for years which didn’t give me hope. I too was suggested changing my diet, different meds (finally found a combo that worked) however it wasn’t until I lost my job and had months to decompress/destress that my symptoms went away. Luckily I had the support of my family but it’s amazing how the last two stressful years manifested in what I believe caused my chronic urticaria . I consider myself luckier than most that it only lasted a year and hope to minimize it ever happening again and hope everyone else suffering from it finds relief.


  5. There is an injectable drug called Xolair which is used to treat asthma and CIU that you should ask your doctor about. I’ve been on it for a year for my asthma and the improvement has been dramatic. I have suffered from chronic ecxema and occasional hives and have seen an improvement there as well. It is very expensive but there is a financial aid program if you don’t have benefits through your employer. I can’t say enough about the drug. I had tried everything else and was developing pneumonia continually. It has been life changing for me. Good luck!


    • I’ve been dealing with Chronic Urticaria now for 2 years. I get the same message from everyone…nothing we can do. It’s frustrating. I take an very low dose antihistamine which works usually for about a day and half until I have to take another pill. It’s annoying and frustrating. I try to keep note of when it really flares up, but can’t pinpoint it anything. Sometimes I think it’s food related, other times hormones or stress. I tried the elimination diet. Perhaps I wasn’t as strict as I could have been, but even in a few weeks I didn’t see any improvement. I am now on a regiment of vitamins and minerals (hoping magnesium will kick start my immune system). So far nothing..but it doesn’t hurt to take all the vitamins/minerals so I’ll stick with them. I pray that one day I’ll wake up and the are gone…Irine, if you had any tips of how to completely eliminate sugar, gluten, and dairy, it would be greatly appreciated. Thanks!


  6. Irene,
    Wow…just finished reading your article. I felt myself nodding, as you described what you went through. You at least have given me a name to what I experienced for the past 5 years of my life. I too, went through the allergist and then dermatologist and finally after years of cortisone creams, antibiotics and meds, I decided to visit a naturopathic doctor. He was able to determine that I had a high intolerance for dairy. After 5 days of cutting out dairy (completely). I noticed a difference and felt better. I also take 1/4 citirizine (Reactine) pill before I go to bed. It was beyond debilitating…but I can honestly say, that with my changed diet, I’ve been ‘hive’ free for over a year…
    Thank you for sharing your story. When I was dealing with this exact scenario for the past 5 years, I scourged the internet for further info and was left feeling as though I was losing my mind. Dr’s telling me it was ‘just a little hives’, or ‘it just happens sometimes’, really made things worse, because it made me feel as though I must be exaggerating my situation in my own head. Your story has helped me realize that I’m not the only one out there and that the more we share, the more information you can arm yourself with to ‘help yourself’, particularly if you’re not getting that help from the medical community.


  7. I have been suffering from hives for over a year, but they only occur during my monthly cycle. They appear about a week before, last throughout my period and slowly start to fade when the cycle is done. Overall I may be hive-free for a week and a half each month. The hives are huge, they are extremely itchy and painful as well. I’ve done research and truly believe it is APD (autoimmune progesterone dermatitis), but my doctor is refusing to believe this. I’ve seen allergy specialists and a dermatologist who just don’t know what to do about my situation. Antihistamines don’t help…at all. I won’t give up, and will continue to push to find answers and help from this.


  8. 150mg APO RANITIDINE twice a day really helped me. It inhibits histamine in your stomach. Prednisone also helped but since it is a life saving drug I did not take it for very long. I wish you well and hope you find help soon. The constant itch is hell.


  9. I’ve been dealing with CIU for several years. They came out of nowhere and were just like you described. As with your experience I also suffered the effects of delayed pressure urticaria after wearing any tight fitting clothes (bra, jeans, socks). It took a year to get into an immunologist and another year and a half of drug experimentation to get my hives under control. A lower dose of Sulfasalazine along with Reactine and Montilukast has been working for me for the past five months. I still suffer at times from delayed pressure urticaria on my feet but it tends to subside within 24 hours. Having to take meds on a daily basis is not ideal but it beats the alternative.


  10. I had chronic idiopathic urticaria, including pressure and temperature changes, for approximately 18 years without any kind of relief. I got hives first when I was pregnant with my older son in 1994. I consulted with an allergist, immunologist, diseases of the skin specialists, and was put on a number of different cocktails of antihistamines and diet restrictions. After about 5 years I just stopped going to physicians but continued to take prescription antihistamines daily which didn’t help at all on my worst days when 75% of my body was covered in hives. In was in 2008 when I discovered I was pregnant again and for some odd reason I stopped getting hives. It was such a relief! My doctor was able to explain why that might be – something like my body going into overdrive creating immunities to protect the baby but I was convinced it must be hormone related as it first developed with one pregnancy and went away with the next pregnancy 15 years later. But it didn’t last. Within 3 days of delivering the baby, I started to develop hives again……and with a vengeance, but I was encouraged to seek treatment again as I was relieved of it for 9 months. I started reading forums and blogs and one name kept on coming up, Dr. Gordon Sussman in Forest Hill in Toronto. I got an appointment and after a consultation I started on a variety of coctails of antihistamines…..nothing worked. At one point I broke down in his office after he flippantly said, ‘look, this is not a life or death situation’. I told him that this has affected every part of my life! He then mentioned he was doing a study on treating CIU with an injection called Xolair – which was currently be used to treat asthma. I didn’t have asthma, and this injection was going to cost $700 a shot – luckily my employer insurance covered the cost. I started getting the shot every 4 weeks and although there was some relief, I was still getting hives. Then I noticed after 3 months I was having more days without hives, then I was having with them. After another 3 months they were practically non existent. After a year of not getting any, I stopped getting the shots. I was fine for about 3 months but the hives came back – I mild outbreak but still uncomfortable as I got used to not having any for awhile. I went back on Xolair every month and it’s now a year since I had my last outbreak.


  11. I had a very similar thing happen to me, although it was triggered by a virus. I had hives for 2 years and it was devastating. It was a torture that can only be understood by someone who has been through it. I suffered for a very long time and made many trips to my family doctor and hospital. There simply wasn’t any drug to provide relief, which was pure and simply devastating. The doctors said there was nothing more they could do for me and that I would have to let it run its course. I was alone, to figure this out. I tried to change my diet, I ate only rice for a very long time … but it did nothing. Then … I will never forget this day … I was in Walmart in the checkout line, looking like a zombie because I have not slept in weeks because of the constant itchiness. A friend saw me in line, and came to talk to me. She was very concerned because I looked just awful. She asked if I was ok, and I just broke down and cried in the middle of Walmart. I told her that I honestly didn’t know how I could go on with this constant itchiness. She walked me to the pharmacy and picked up a box of Reactine …. simple Reactine …. I laughed hysterically and told her it wouldn’t work. She was very forceful and told me to buy it and try it. So I bought it. At this point I was already overdosing on Benadryl which wasn’t working .. and if I took this .. then I wouldn’t be able to take Benadryl for 24 hours… it was a BIG itchy risk. So I tried it, and it was like a miracle. The hives subsided and I was human again, able to function and most importantly SLEEP!!!! Michelle was my savior and I will never forget that day. I continued to take Reactine for 2 years and over the 2 years the hives subsided until I didn’t need to take it anymore. I hope the people that are going through this find relief… hang in there!


    • Reactine, yes I am glad your friend showed you this as being drugged up all the time is not good. Thyroid medication, are you on it or any other medication that increases your internal body Temperature?


  12. I have had idiopathic urticaria since 1963 when I was 17. At first it was thought that I was allergic to the insulin that I was using, and so I switched from Bovine insulin to Porcine insulin. It did not change anything, and a s I grew older, I developed more severe welts (they are not hives, as hives only last 24 hours). I have a friend who also has idiopathic urticaria, a former colleague has it, and it is generally brought on by stress. I, too have had horrible problems with internal swelling as well as external, and was unable to swallow at times. Adrenalin just put me to sleep rather than fired me up, but at least the urticaria went away for that day. I have several autoimmune conditions (Type 1 being the most major) and have a history of severe allergies. It is a horrible condition and it continues to this day in the form of welts after wearing certain clothing. Antihistamines do not work, oatmeal baths do not work, but it has subsided, but is always there.


  13. Try juicing. Check out Joe Cross juicing on the web.


  14. Irine I feel for you. I too suffer from CIU. I am
    Now finding relief with a new drug called Xolair.
    If you have another break out talk to your doctor
    About this new treatments


  15. Thyroid! Hoping this information helps all who are suffering from chronic uticaria! Just like all of you I also suddenly broke out in body covering itchy hives. Yearly when the weather gets cold my exposed skin will cover in hives, by covering with warm clothing they would go away. Taking antihistamines would relieve the itch but then I wouldn’t know that my skin was getting cold and I was getting hives as I couldn’t feel the itch and cover up with warm clothing therefore getting even more hives. Last October my thyroid prescription was increased, six weeks later hives on top of hives covering my entire body that would not go away with warm clothing, five weeks! Prednisone was prescribed but did not help! I researched and found that thyroid medication increases your internal body temperature so I immediately lessened my meds by taking every other day. By day three the itching began to relax and within two weeks I was hive free. But now I was having trouble getting enough oxygen because I had lessened the dose too far. The dose was adjusted. Note that the weather was still cold out and I still needed to cover with warm clothing just as it is still like this today because of the Thyroid medication but at least I can control the hives to some extent with warm clothing. Please check with your doctor to see if you can handle a lower dose to lessen the severity of the hives. Once the warm/hot weather arrives your hives should go away. For me personally the temperature needs to be above 20 degrees Celsius whether indoors or outdoors.


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