In March of 2020 I started getting hives. In June of 2020 I was diagnosed with Chronic Autoimmune Urticaria (CAU). I have Hashimoto’s Thyroiditis, an autoimmune disease. CAU tends to be common with Hashimoto’s. I struggled with hives for over a year. I now can say I am not struggling with hives but instead managing them. They never go away. I may not have them one day and the next they are there. They may last a day, two days, or one to two weeks. It has taken me some time to learn how to successfully manage them. I decided to share what works for me in case it can help others who are dealing with CAU.
CAU can be overwhelming and exhausting. I have been to many doctors including dermatologists and allergists to get help. In the beginning I was put on antihistamines and steroids. Two antihistamines in the morning and two more at night. I had to jump antihistamines as they became ineffective. I went through four rounds of steroids and eventually that became ineffective. My goal was to avoid being on daily antihistamines and rounds of steroids. I found a practice run by Dr. Becky Campbell that specialized in CAU. I have been working with Dr. Krystal Hohn, at the practice, since September. Working with this group has been the best solution for me so far. Both doctors have personal experience with hives. This made a big difference.
What do I do to keep my hives away? My routine is stress management, acupuncture, exercise, follow a strict diet, and take daily supplements. Sometimes it feels like a full-time job and requires a lot of focus. It is most difficult when I travel or am out of my daily routine. At these times I must make sure I refocus, make smart decisions and adjust.
It is so important to manage stress. In the beginning I would get very stressed when I would start to breakout. I learned fast stressing made it worst. The more I was bothered by the hives the worse they would get. I felt the hives were in control. Now I feel like I am the one in control. My life can tend to be stressful. I am a single mom of two. I have two aging parents and a job with a lot of responsibilities. I work on keeping a healthy work life balance and setting boundaries. I have worked on not taking things personal and not blaming others. Taking responsibility for what belongs to me gives me power to deal with it and make needed changes. This also helps me to set boundaries with myself and others. I work on saying no when needed. It is important to make sure I take time to have fun and spend time laughing. I have found when I have been on the edge of a bad breakout and end up doing something fun and laughing the hives settle down.
I schedule forced downtimes by getting facials and acupuncture. I take time to breath. If I am in a stressful situation, I do breathing exercises. My acupuncturists specifically targets hives and mood. I find I must be consistent. I get a facial every four to six weeks and do acupuncture every three weeks. If I have a bad breakout I go back to weekly acupuncture until it is under control and then taper off. I will go every two weeks and work my way back to every three weeks. I also find that going for a thirty-minute walk after acupuncture really helps.
I took the Dutch Test and GI Map. My hives tend be extreme before ovulation and before my cycle. The Dutch Test revealed my liver doesn’t digest estrogen enough, so I end up with more estrogen in my body during those times. Histamines attach to estrogen. This causes more of a build up of the histamines in my body during those times. The result is extreme hives.
I watch what I eat. I try to stick to a strict dairy free, gluten free, low sodium, low histamine diet. It sounds harder than it is. I try to avoid alcohol, foods high in histamines like bananas, tomatoes, avocado and spinach. These are some of my favorite foods. I don’t always avoid these foods. I find the worst thing to do is to have multiple high histamine foods in a meal. If I have only one of those foods I should be good. When I know my meal may be high in histamines, I take two allergy pills. My go to is Xyzal. If things are really bad, I add a soft gel Benadryl. In cases when the breakout is out of control, I must ice my hives.
Hives itch. As the breakout gets worse the nerves are more sensitive. They progress from itching to tingling, to feeling like I am being tickled and finally to feeling like my skin could rip. Sometimes the hives are hard. Sometimes my lips, eyes, wrists, and ankles swell. The top of my feet can feel like they are on fire. My joints can be stiff and my energy level tanks. It is important for me to be patient with myself and give myself time to recover when I am in a complete outbreak. This may look like sitting on the couch all day, not getting much done and dialing back with family, friends, and work. It may also look like asking for help.
Daily exercise helps tremendously. I try to close my Apple Watch circles daily. At minimum I try to always take a 15 min walk and never sit too long. I am adding weekly Club Pilates to my routine to help with the joint stiffness.
I take quite a few daily supplements. I have been on Synthroid for my thyroid for 20 years. I find I must be on brand and not generic. I was on Lexapro for depression but found that triggered my hives. I have gone off Lexapro. I put myself on Turmeric a few months ago. This has helped greatly with the swelling. Dr. Krystal has put me on a muli-vitamin, Liver Lover, and HistoRelief. I am also on vitamin D.
This regimen has helped so far. I have more gut work to do and a few more supplements to add in. I plan to focus on being very strict with diet prior to ovulation and my cycle to help ward off bad flare ups.
It sounds horrible but, in some ways, the hives have been a gift. Hives are an indicator that I am out of balance physically, spiritually and/or mentally. Because I don’t want an outbreak, I tend to try to keep these areas in balance. It all is a work in progress.
If you experience CAU know you are not alone. There are many people world-wide, mostly women, that have CAU. There are FB groups for support. What works for me may not work for you. That said I have read many posts where the recommendations include exercise, stress management, eight hours of sleep and watch what you eat. The areas of focus seem to be the same but what you do within those could be different. Foods that trigger me may not trigger you. Keep a journal. I try to log my food and exercise on My Fitness Pal daily. I try to we aware of what I ate before a breakout and the part of the body the breakout occurred on. What I find stressful you may not find stressful and vice versa. Be kind to yourself. CAU is a wake-up call to take care of yourself.
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