I just came across this disorder for the first time today, and I’m pretty sure this is what I have. I’m a 32-year-old female, and I currently have Hashimoto’s Thyroiditis. Let me explain what has been going on with me.
In March 2014, I realized that I needed to lose weight and get healthy for my upcoming wedding. I started eating very healthy and working out–A LOT. I was doing “insanity” 5 days a week and lost 45 pounds. In June I started getting a prickly sensation on my scalp at my hairline during my workouts. I brushed it off and pressed through.
I got married in August and went to St. Thomas for my honeymoon. No symptoms at all. Upon my return I continued to work out but my scalp kept getting the pins and needles feeling every time. One Friday I decided to go for a run so I set out on what I thought would be a nice 4 mile run. About half mile down the road the sensation returned with a vengeance this time!
My entire scalp, chest, back and arms had horrible pins and needles, prickly, painful sensation. So bad I had to walk home. I thought I was having a stroke! I went to my doctor. At first she thought it was just anxiety, but she took me pretty seriously. Since that bad episode, I have had the symptoms more frequently. Vacuuming, hot showers, sitting around a hot camp Fire, laughing hysterically, during intimacy.
In the last 4 months I have seen a cardiologist, neurologist and endocrinologist. I’ve had an MRI of my brain to rule out MS, X-rays of my neck to rule out a pinched nerve, a stress echo and pretty much all possible blood work you can think of. Everything came back clear. Never once has my doctor even mentioned cholinergic urticaria.
I happened to Google my symptoms and found it out on my own. So since my symptoms intensified I have been completely avoiding all exercise which has been very depressing. I need to get back to normal life! I’m going to follow up with my doctor and see if she recommends an antihistamine but as I read some of these post it seems like it helps for awhile but the symptoms return. I’m so glad I found this blog. I felt like I was the only one going through this! It’s very frustrating!
Thanks,
Liz
Twig says
Thank you for your story Liz. I also have had this disorder for over a year now. I am a collegiate runner on scholarship for cross country and track; so, as you may guess., these painful, itchy, and prickly hives aggravate me… A LOT. I have found that stress and anxiety, as your doctor said, does tend to make the symptoms worse. Also I, for mine, and others on the blog, have found that sweat therapy can help out a lot. Recently mine also came back with a vengeance and hurt extremely bad. For me, I always push through it, because i believe that the mind is a powerful tool. After the recent onset of heightened symptoms, i have been experimenting with things that work to combat these symptoms.
Currently i am taking two Zyrtec a day. Yes, I know Zyrtec is a 24 hour pill but you can take up to four with no side effects other than you need to drink more than usual because antihistamines tend to dry you out. I take one in the morning and one an hour before I work out. After a certain point, the pain goes away. I make sure i work up a good sweat and keep sweating. When i take a shower, I take a HOT shower. I make it break out on purpose and sweat a little in the shower; Like going to a hot sauna. I also have cut out all fast foods and most sugary foods, besides for an occasional candy bar now and then. I drink only water and Gatorade; at least 2 liters of water a day and 1 Gatorade a day. Also i read lot, i have found this to relieve stress and anxiety and it relaxes me. It is almost like meditation. All of these actions have helped me combat my symptoms so that i can exercise fully fairly comfortably.
Everyone’s body is different and i cannot promise that these will work for you, but i encourage you to experiment and try if your doctor says it’s safe for you. First getting CU is hard and can be frustrating, but finding ways, that work for you, to combat the symptoms will give you new hope and help you mentally to push through it a little. I hope everything goes well for you and can find what works for you.
-Twig
Liz says
Thank you Twig for your reply! I’m actually excited (as odd as that may sound) that I finally found answers!
Anonymous says
What do the hives look like? I suffer from hives from working out too, bu mine are very large hives which point more to exercise induced anaphylaxis, as the hives for cholinergic urticaria are smaller.
Twig says
Mine are very small like little pin marks all over my body
Kirstin says
hi, I have both types big and small. If it gets bad enough, you can’t even see my skin at all!!
Lauren says
Hi Liz,
Question: Are you on birth control? If so, which one? I’m currently suffering from this too; however, mine is very much linked to adrenaline – embarrassment, panic, exercise, etc, and less so with hot showers and direct heat. I read on another forum that birth control can be directly linked to hives.
Also you mention a thyroid problem, have you recently got tested again for changes in your thyroid? Maybe the medication you’re taking at the moment for it is too strong/weak.
All the best
Liz says
I’m not on any birth control. I have Paraguard. It’s a copper IUD with no hormonal release. I’ve had it for a few years. My thyroid levels have been off balance for a few months. I went from 50mcg a day up to 88 and now am on 100. I think it’s finally under control. I can always tell when it’s off because I dont feel quite right. I’m getting repeat blood work done next week so fingers crossed my levels will be good!!!