(This might be the most boring post I’ve ever written. But I wanted to put it out there on the off chance another person is suffering as well.)
I was 30 and living in San Francisco when I first wrote about it. I wrote about the razor rash on my legs. At the time I thought it was from not ever changing my razors due to my neurosis about sharps in landfills. That wasn’t the case.
I moved back East and it persisted, sometimes it got worse, sometimes better. But it never fully went away. I wrote about it again.
I’ve been to at least a dozen doctors over the years. I’ve seen gynecologists, fertility specialists, primary care physicians, allergists, dermatologists, endocrinologists. I even asked a psychologist about it. The best I got was a prescription strength steroidal cream from a dermatologist. That helped, but it still didn’t go away.
Not one doctor had an answer for me. No one even seemed to care. I became more miserable and they wrote my misery off as razor rash or dry skin.
I decided I’d probably live this way forever.
But then last six months things have become much, much worse. The rash and hives have spread. They’ve moved onto my thighs and hips. And have finally reached my stomach and arms. Living a comfortable life was becoming increasingly more difficult. I’d wake up at night with blood on my shins from scratching. In the evening the rash was always worse. The removal of a pair of socks or pants seemed to trigger it. Taking off my bra made my chest itch. I stopped wearing shorts or skirts.
There was no relief. I tried every over-the-counter cream I could find. I gave up soap. I used certain detergents, none at all. I stopped taking hot showers, would go a few days without one. I stopped shaving. Started using natural ingredients only. Nothing got rid of the itch. I began to think maybe I was making it all up, that it was all in my head; maybe this was the first step into complete madness.
Desperate, I asked Twitter for new dermatologist recommendations because the woman I’d been going to for years wasn’t helping. On top of that she has a two-month waiting period. It didn’t even seem as if she listened to me anymore.
Missy came to my rescue. She suggested I see her dermatologist. This doctor had answered a lingering skin question for her. I got an appointment for the following week. This time I’d go in and beg for help. I wouldn’t leave without some sort of answer, even if it was just a plan.
On Monday, a 7-year long question MAY have been answered. After running a test on my back, the dermatologist diagnosed me with Dermatographic Urticaria, or chronic urticaria. She said there’s no way of knowing how or why I developed it. Usually there’s an event that jumpstarts it. A person might be bitten by a lot of mosquitoes all at once, triggering an intense histamine response. That response is remembered and the body begins creating its own hives. It could have started from stress. No one knows.
Here’s the bitch: the more I scratch, the more my body releases histamine creating a terrible cycle. The more hives, the more scratching; the more histamine, the more itching. Repeat until I’m covered in hives.
There are some days I look like a leper.
She prescribed me a super strong allergy medication, which will turn me into a zombie. I have two kids. One is a baby. Turning into a zombie, unable to stay awake, is not an option for me.
When I got home that evening, I had the biggest outbreak I’ve had in a while. I scratched myself raw. My mother was visiting and asked me to stop and I couldn’t. We covered my legs in ice and I took a Benadryl. It helped. About 30 minutes after the itching stopped, I had a piece of dark chocolate. My legs broke out immediately. I took a picture.
That’s when I realized that I’d had chocolate right before the initial outbreak. Could this be a food thing too? And, if so, could I find a cure without using medication?
So I researched. I discovered there’s low histamine diet where one avoids foods containing high amounts of histamine. You can’t avoid the chemical entirely, but avoiding foods containing higher amounts can help. Here’s the list.
The surprising thing is, several of the items on that list have given me allergic reactions in the past—more common allergic reactions. (At age 26 I went into anaphylactic shock after eating shitty shellfish. I have had an epi pen ever since.) Cinnamon is on that list, as is red wine, cheese, chocolate and bleached flours. Most processed foods trigger high histamine responses. And preservatives are the devil. All of those items, except for cheese, have given me problems in the past. (During my allergy screening, cinnamon and lobster were my two highest offenders.) What’s more fascinating to me is that the longer shellfish and seafood has been sitting around, the worse the histamine response. This explains why fresh seafood and shellfish doesn’t give me any problems. Weird, right?
I am entering day three of this diet and my itch is gone. I have no new bumps (the old ones are still healing) and there haven’t been any hives at all. Not one.
So, I’m going to follow this diet for at least a month to see if it does indeed help. I need to go for at least that long to make sure this isn’t still a hormonal issue, which is what I thought was the case in the past. One thing is for sure, this has gotten much worse the older I get and seems to progress with every pregnancy.
This diet hasn’t been easy! I don’t eat red meat and I enjoy seafood a great deal. So the list of what I can eat has become really, really small. Even soy products are a no-no for now. And I eat a great deal of soy. And giving up chocolate might be impossible, but at least I can cut back on everything and sneak some treats in from time to time. That is, if this works. If not, I’m back to square one.
Have you seen the documentary “Fat, Sick, and Nearly Dead”? (Not that I think you are ANY of those things…) The documentary focuses on two men who have health issues, including chronic urticaria! Might be an interesting watch for you…
So glad you figured this out after seven years! So what on earth do you eat now?
Sadly, I’m not sure I still have this figured out regarding the diet. I spoke too soon. Day 4 was a doozy, the itching was back. :[
Someday I’ll live comfortably again. Maybe.
U might try allegra d (fexofenadine) no longer need prescription sold behind counter it is high power antihistamine but non drowsy
Thanks! I’ll try it. Benadryl makes me REALLY cranky. And dead tired.
hope it helps :)
Two words. Blue Emu. Seriously. It will (might) change your life. It did for me and I was about to jump off a bridge from the itching. If you try it, let me know if it works for you. I’m curious about weather it is a miracle product or if I was a fluke. Either way it sounds better than an anti-itch diet. Good luck!
Michelle,
I just got this DX. How are you doing with the elimination diet? My derm is treating it from the inside out with Allegra and Zytec at night. Would love to correspond by email about this is you want. I am on twitter and I follow you.
Stacy
I feel as if I wrote this article. I have been itching daily since my 2nd pregnancy. Our skin looks similar. Your article has helped. My allergy specialist just performed testing and everything came back normal. I feel as if it is psychological. I have the bumps and the itchiness. I have pondered all kinds of ideas that may have something to do with this problem. I thought I found the culprit….my liver but that is normal now. Thanks I will share this issue with my dermatologist.
Just spotted this thread. Bit late i know, but I have suffered with itchy calves for years and what you all call hives (as the pics are the same as my spots). I have found a pattern to mine and call it my “sugar bumps”, as it is triggered when i eat sugary foods…mainly chocolate…and when my body is warm/hot. I also get them on my thighs sometimes in really bad cases, but as i said…i have worked it out to be during consumption of sugary foods. Hope this may help anyone who is also suffering.
I’m so it hey few months now can’t figure it out its so bad at night !! I get bruises cause I itch so bad ! No one has answers except contact dermatitis or eczema !! Ahhhhhhhhhhhhh nothing is working – so done with this – help
Did you ever find anything that helps? I feel like I’m having the same problem and it’s so annoying. Been like this going a month I looked it up in google what may trigger and I read sometimes your body triggers signal when something is wrong and ichy can be a signal of some of these Is It Related to Your Nerves?
Your nervous system can get confused when it’s sick and accidentally tell the nerves on the skin to start itching when there’s nothing there to cause it. There is no rash. But your skin may appear irritated if you’ve been scratching a lot. Your brain may send an itch signal to the nerves in your skin, even though there is nothing there to cause it. You can get it from:
Shingles
Multiple sclerosis
Stroke
Brain tumor
Nerve damage
Is It Psychological?
If your doctor can’t find a physical cause, it may be in your mind. Some mental conditions give people the urge to scratch or pick at themselves. They may feel like their skin is crawling with something. There is no rash, but there may be skin damage from scratching. Compulsive scratching can be a sign of:
Depression
Anxiety
Obsessive-compulsive disorder
Psychosis
Trichotillomania
Unlikely, but Possible
Itchiness usually has a simple, common cause. But in some cases, if it doesn’t go away, could be a sign of a serious illness, such as:
Kidney disease
Liver disease
Thyroid problems
Certain cancers, particularly Hodgkin’s disease
Diabetes
Iron deficiency
HIV
You might also start itching after the treatments for some of these illnesses. Kidney dialysis, chemotherapy, and radiation therapy have it as a side effect.
Liver disease! That’s what causes mine Alpha 1
Check for elevated, low or mutated enzymes called Alpha -1.T I have this liver disease and I have constant hives! Food smell medication grass allergies! Pretty much a new allergy every week! Your allergist can test for it! Or contact Florida university lab they will do mail in testing for free to help with their research.
My symptoms started 7 years ago and I take ZANTAK! Anti-histamine before cutting the grass or doing things I know will make me miserable! My feet are the worse! My hands too. Claritin and Zyrtec alternates help SO SO MUCH! J was also on steroids for 7 months!!! Still trying to lose the weight from those suckers!
Good look. Look into it.
Can you PLEASE refer me to the dermatologist you saw that eventually diagnosed you? I have a rash on my whole body that looks almost identical to your picture! Mine is so irritated and itches at night and I haven’t been able to get a solid answer as to what it is.
It’s inflammation of the small blood vessel’s right under your skin.. It’s triggered by two things, toxins from diet(chocolate and sugar.. It happens every time i eat Reese cups etc) heat and being active… Run and see if your legs itch, and i also developed raynauds right before my issue with these bumps/welts started… My triggers are sweets, posture (try not to cut off leg circulation) stress and exercise.
Oh my gosh! I’m so thankful for your post. I think this is what is going on with me. After having my girls my skin has been doing strange things like this. I’m going to try to avoid these foods and see what happens.