This is not a showy or pleasant post. There aren’t any suggestions for a miracle cure for hives either, just one individual’s experience. In fact, if you don’t like pics of skin problems (can’t say that I do either), than maybe this one isn’t for you. And don’t scroll to the bottom if you don’t want to see the pics. I tried to keep it ‘light’ and not overpowering. While it’s not fun to have it, it’s not fun to look at either.
However, since hives are one of those conditions that still baffles doctors (the best they can usually do is try and ease the symptoms), I’m sharing some of my history with them, in the off chance someone else can benefit or has been through the same. And honestly, I’ve been putting it off. It’s not fun to talk about something that is wrong with you. But here is hoping that it’s worth the effort in some way.
What is Bilateral Delayed Pressure Urticaria?
I can only speak for myself here, as this was my diagnosis in the past and what I experience. But this means that hives appear in any area that has been given extra pressure than normal. When the hives are bad, this means that things I sit on and things I stand on are pretty much always covered in hives (aka, feet and you know the other one…). In any level of severity, I have to be careful not to wear tight clothing or too loose clothing that will rub. I have to sit on softer surfaces and try not to wear shoes/socks that often. I cringe at hugs (which is sad for me – otherwise I like hugs very much!), I’m afraid of a friendly shoulder punch, and I always seem to wake up with new hives each morning. Some days they start out severe and lighten up. Other days they start out almost non-existent and grow throughout the day as I am being active. So that speaks to the ‘pressure’ part…
Cuts, bruises, or bumps are typically very painful because a hive will also develop in the affected area. However, those hives usually only last a day or two. The hives from pressure are the ones that are ‘delayed’ (come in hours after the offense), hives from more severe pressure, like aforementioned cuts, happen almost immediately. But like I said, they don’t last very long.
The bilaterial part is to do with how hive number 2 comes about. If hive number 1 is caused by pressure, then hive number 2 appears in the exact same spot, on the opposite side of my body. For instance, if I have a hive on the outer side of my right shoulder, within a few minutes to an hour there will be a similar hive on my left shoulder. This is the part that baffled doctors the most. Although, this only happens left to right/right to left, not from front the back or back to front.
Dermotology.about.com says that “The hives of delayed pressure urticaria are deeper and more painful than hives caused by other stimuli and they start 2 to 6 hours after pressure is applied to the body. The hives last from 8 to 72 hours and many people get a low-grade fever, fatigue, chills, muscle aches, and headaches with the hives. The disease is chronic, lasting on average for 9 years.” There is some more info here at Medscape.com, although I have found limited information on the bilateral part of the condition.
My experience with hives in the past
On and off through my life, I have had this condition show up. It’s apparently a “no cause, no cure” condition, or at least that is what I have been told. However, life was not without some stresses and adjustments–like going away to school for one–so some ’causes’ could be argued. When I was 14 years old, and living in a dorm at boarding school, I started to see small itchy “C” like rings on my elbows. The very first time I saw them was immediately following a basketball game where I played almost the full time, plus had eaten a quart of strawberries right before (I know, weird. But my parents had come for the game and had picked them up at a roadside stand. And because I love strawberries so much, I ate them as soon as I saw them!). So our first thought was an allergy to strawberries just popped up. But we found out quickly that wasn’t it. Then we thought it was some sort of bug in my dorm room. So we did a complete overhaul of everything – I don’t think I ever cleaned a room so well before. But, still no change. I kept getting the welts on my elbows.
I was part of our school’s ‘Ski Club’, and every week we would go to the mountain to ski/snowboard. My parents would meet the group there and also go with us. One week, I can’t remember if I snowboarded any runs beforehand, but I ended up staying in the lodge with mom for most of the time. Hives had been spreading over more of my body and I was running a high fever (105). Ironically, my family physician also was in the group that went skiing every week, and he said he wanted me to come to his clinic in the AM if I didn’t show any signs of improvement. Well, I didn’t. By the time we got to his office, my mom describes me as looking like I had been dipped into a giant vat of scalding oil. There were no spots on my skin where I did not have some part of a hive. Long story short, I ended up going into shock, they have me on IV’s, and after all the dust settled I was sent home with strict instructions to eat nothing but white rice for a week. If all went well, we would introduce all natural applesauce next. So I stayed at my parents house and did my homework for school remotely. Ironically, I will never forget this… that week my class was watching a movie about Ghandi and I had to write a paper on his life. Here I was eating nothing but white rice and watching Ghandi. Cracks me up. Anyway, I digress.
I went in and out of so many doctors and specialists I can’t even remember. Frankly, I think that I blocked a lot of that out of my memory because it was just crazy. Allergists, regular physicians, dermatologists, chiropractors, holistic specialists, kinesiologists, etc. One allergist was able to diagnose my symptoms and that was the first time we heard about bilateral delayed pressure uticaria. He had me walk around the block with weights strapped on a leather belt over my shoulder and sure enough, welts appeared. And as we sat in his office, he watched the same thing on my other shoulder appear. He took pictures, wrote an article and posted it to his colleagues, looking for answers. We never found out what was really wrong. We made a lot of lifestyle changes for me though, thinking it would help. I didn’t eat gluten, sugar, dairy, or eggs, plus a lot of dyes, MSG, and a few other random things. I ate out of a health food store. Which at the time was horrible. Nowadays there are so many options for those with allergies. I cannot begin to describe how horrible the gluten free bread from the store was when I was in high school. Companies have come a LONG way. I remember I lived on Fritos, since corn was still okay, Gorilla Munch and Puffins cereal, haha. Over time, the hives lessened in the day to day (some days were a lot worse than others), but it was bearable. Unfortunately, as a young, naive, and unbelieving sinner, I only had my momentary desires in my mind. So when I would be hive free for a while, I would go back to chocolate ice cream and cheetos (and taco bell and… the list goes on). And, of course, the hives would come back. On top of all this, I had a lot of anxiety attacks that sometimes sent me to the emergency room. So I was living a bit of a hollow existence. I threw myself into my school work, and I ended up graduating high school early, starting college early, and then graduating with a Bachelor degree (Horticulture/Landscape Design) and a minor in business management, in 3 years. I was also working for a landscape firm part time two of those years. That time of my life feels like a bit of a blur. I made a few great friends while I was there that I still hold dear, but otherwise I don’t have a lot of memories.
Things I did for relief were soak my feet and hands in ice in a large metal bowl. But this always resulted in my skin burning like crazy when the ice melted. So sometimes I chose the itch and sometimes I chose the burn. It all depended on what I thought I could deal with. Things like cortisone or anything topical to relieve itch was useless. Benedryl just made me tired. It would bring swelling down on days when my hives would take over my face or my appendiges in a way that kept me from going to school. But it didn’t provide relief.
And frankly, I know I am missing A LOT of info here on this. My parents could both offer a lot more insight and information on what happened – they were a lot more intune with what was happening to me. I think I wanted to forget, so I didn’t invest in being present. Now that I am older (wiser? We’ll see… ;)), I’m seeing things more clearly and am doing better at putting the puzzle pieces together. So if you can stand it, read on…
My experience with hives currently
I had our son (first child) on October 5, 2013. Everything seemed to be going well with the two of us up until the end of January, 2014. The last week of January, I noticed a medium sized welt on my forearm. I FREAKED out. It had been at least 4-5 years since I had any significant bought of hives, so I panicked. I stopped eating dairy right away (I had been eating it during pregnancy because it didn’t have a negative effect then), and I started being very very careful about things that might have traces of gluten in it, even though I had technically been on a gluten free diet for years (it’s one of the things I’ve never intentionally ‘cheated’ on – the negative effects are too apparent for me to want to mess with it). Or things that had touched gluten, like silverware or someone dipping a wheat laden chip into a communal dip. But the hives steadily got worse.
It came to a head one Thursday night when I was so covered in hives that I could hardly move. Technically I could move, but it was painful. I felt (and looked) like the Michelin Man. I was worried about going anaphylactic and it seemed so likely it would come to that, that my husband and I had a plan for getting me to the hospital, with our son in mind. I had been pushing off taking any Benadryl or other antihistamine because I was nursing our son and didn’t want it to effect him. He was 4 months at the time. But we did the Benadryl for 4-5 days and the severity came down a bit.
Having just moved and without a doctor, I found a new doctor. He is kind and experienced, but in topic, fairly clueless. He even admitted so, so I feel okay sharing it. And besides, I’m fairly clueless too – and I’ve already been through this once before! He wanted me to monitor everything I did for 3-4 weeks and then got back to him. We didn’t really find anything though. Except…
My suspicions are that I have something similar going on to when this occured the first time. And one thing that stands out is a Candida albicans overgrowth (when I stopped the gluten/grains and sugar previously, that would have directly improved this issue). So I’m hoping to begin an anti-candida diet to get it under control. I believe I will be doing that in May. For now I am attempting to avoid grains as best I can, and going back to my old way of eating (gluten, dairy, and refined sugar free – see blog title ;)). I am also taking a probiotic from GNC with a 10o billion count. I honestly don’t think this is all happening because of an ‘allergy’. I think my body’s low immunity is causing it to attack in general, not a specific allergen. But that doesn’t mean that I’m not constantly looking over my shoulder and second guessing things I’m eating. Right now I have pineapple on my suspicious list. And grains (any grains, gluten free included).
It can be frustrating to not know what my day will hold. Every morning when I wake up, I do what I call an assessment. I look all over and figure out where the hives are the worst. On days where they are in my hands, forearms, and face, I have a hard time. Mostly because it’s difficult to hold a squirming baby who is getting heavier by the day (a great thing! Just harder to hold him :)). It can be embarrassing to go out in public when hives are obvious. For the most part, I can conceal them in clothing, hair, and makeup. But not always. Exercise has basically been non-existent since this all began in January. Exercising brings up my body temperature, and the hives get worse with heat. So whenever I exercise, I bring on a lot more pain. Which adds to the frustration because I am gaining weight, losing muscle, and just feeling sluggish. I enjoy being active and so struggle with feeling that it’s not an option right now.
I’m hoping to post updates if there is anything that changes. For now, I am trudging on. Doing my best to endure, knowing that I can glorify God by having a good, prayerful, and positive attitude through any circumstance. I will enjoy my husband, enjoy my son, enjoy our church family, and live life in the best way I know how. I have SO MANY blessings in my life I can’t even begin to comprehend how God has chosen to bless my family and I. One day in heaven I will be able to look back and see the entire picture of my life and how everything fit together for God’s glory and for my good. This is just a small piece of the puzzle.