Brachial radial pruitis

[STL reader]

Originally Posted by lburley

I also have brachial radial pruitus and have discovered that not only is this a rare disease, but most doctors haven't even heard of it. I bounced around for five years from family doctor to dermatologist to neurologist before I finally found some information on the internet and was able to diagnose myself. I took several articles I had found to my family doctor whoe read them and agreed that was what I had. I now take 100 MG Lyrica twice a day and that has helped tremendously, but I still need ice packs on some evenings. Here's what I know:

Symptoms: Severe itching on arms, shoulders, lower neck, upper back. Itching changes from year to year and always occurs in certain spots. This year, it's my upper arms. Last year, it was my lower arms. Itching cannot be satisfied by scratching and if you try it that way, you'll simply scratch until you bleed. My arms are covered with healed scratch marks. This disease is seasonal--itching begins mid-summer and lasts until January/February with decreasing intensity. The symptoms are also strongest in the evening and night time. Rarely bothers me during the day unless I have tight sleeves or am sweating (like during a workout).

Treatment: This is a nerve disease so trips to dermatologists are useless. The only thing that may work from their perspective is to numb your skin and that's just not practical on a nightly basis. I take Lyrica which is often prescribed for fibermyalgia patients. The nerves in my arms are damaged, most likely from some combination of too much sun and a genetic predisposal to this disease. But the damage is not severe enough to be felt as pain--my brain thinks my arms itch and it also feels like a burning just below the surface. That's not so bad--much better than the itching. I take 100 mg around 6:00 in the evening, just when the itching may start. I take another 100 mg at bedtime, around 10:30. This drug makes my life bearable again but does not completely fix the problem. I also take a bag of ice to bed with me because when I turn on my side, my arm often starts to itch. I'm guessing from both the warmth and the tightness. SOmetimes if I just get my arms out from under the covers, the itching subsides.

I wrote this blurb here in hopes that some day some one will see it who will know of a better way to treat this or maybe even a way to cure it. I tried hard to stay out of the sun this year but it made no difference. But I live in Arkansas, so it is very difficult to avoid sun. And maybe someone else who suffers from this will see it and finally be able to go to her doctor and say this may be what I need to do. I had one doctor tell me to wear mittens to bed because I was performing phantom scratching--I only THOUGHT my arms were itching. I had another doctor prescribe some useless cream and when I reported it didn't help, he said that was too bad. Hope you find a way to figure it out. Apparently, a lot of doctors don't think itching is much of a problem. Wish they could go 7 months every year, not being able to go to sleep for hours and then being woken up in the middle of the night and having no alternative but to get into a cold shower for relief. Or having to tell your lover you just can't touch my arms at all--try hugging that way. I tried to find a doctor in this state who had even heard of the disease, and so far, no luck. I'm just glad I have a family doctor who was willing to listen and try something else every time one treatment didn't work. It was his idea to try the Lrica and it has been wonderful. Hope the rest of you find some relief as well.

Oh MY! Reading your post was like reading my own diary! Everything you mention is exactly what I am dealing with. Even sleeping with the ice bag. Doctors always think I'm nuts - and you're right - dermatologists are especially useless.

I've had this condition off and on for at least ten years...but this summer has been brutal. Right now I'm typing with an ice bag balanced on my arm.

I'm printing your post and taking it to a new chiropractor this week. Thanks for summing it up so well.

[r3volution]

I've got it too and it is brutal. Its ice packs on both arms for me to fall asleep nightly. For me it goes away in the winter, thankfully, because if I had it year round I seriously might consider killing myself because the itch is so bad it is painful and difficult to sleep. I am fairly certain it is heat related and not sunlight related because I have tested my reaction to both and it seems to react negatively to heat conditions but not necessariy to sunlight without heat. In fact, when I first got this 9 years ago I was living in a very hot and humid SE Asian country with no air conditioning in my house. But at the time, when I would travel and stay in air conditioned hotels for any length of time, the condition would go away until I returned to non-airconditioned accommodations. I too have been to the dermatologists and they are useless. I have come to the conclusion that it is nerve induced because it comes from underneath rather than the superficial part of the skin. Lately I have felt a subtle tingle and slight burning sensation radiating into my index fingers.
I'm still searching for a treatment or cure. Please share if anyone gets rid of this thing.

[cath4512]

I have peripheral neuropathy in my feet ( idiopathic at the monment) which started in June & seems to be progressing quickly.
A few weeks ago my arms started to itch really badly, to thr point where I have cut myself with scratching them.I dont know if its connected to the PN or not.
I see my neurologist in November so hope he can shed some light on it.
I find that cold flannels wrapped round my arms helps a bit.

[bethhansen]

Yes, it is brutal!! I have had it for 30+ years and have never found a doctor who knows what to do. Also, I thought that I had been going through menopause with hot flashes for over 20 years, but I think part of this disease is connected to heat, and my body seems to want to produce too much heat, too often, and then I get the attack of the burning itch on neck, upper arms and back. I am even breaking out on my neck now, probably from scratching too much. I am so thankful to find all of your comments, as you convinced me that I am not just going "nuts". I think I will try the acupuncture. I will let you all know how it works for me.

Originally Posted by r3volution

I've got it too and it is brutal. Its ice packs on both arms for me to fall asleep nightly. For me it goes away in the winter, thankfully, because if I had it year round I seriously might consider killing myself because the itch is so bad it is painful and difficult to sleep. I am fairly certain it is heat related and not sunlight related because I have tested my reaction to both and it seems to react negatively to heat conditions but not necessariy to sunlight without heat. In fact, when I first got this 9 years ago I was living in a very hot and humid SE Asian country with no air conditioning in my house. But at the time, when I would travel and stay in air conditioned hotels for any length of time, the condition would go away until I returned to non-airconditioned accommodations. I too have been to the dermatologists and they are useless. I have come to the conclusion that it is nerve induced because it comes from underneath rather than the superficial part of the skin. Lately I have felt a subtle tingle and slight burning sensation radiating into my index fingers.
I'm still searching for a treatment or cure. Please share if anyone gets rid of this thing.

[jhurst90]

I suggest, based on my personal experience, this is an allergic reaction to berries, primarily strawberries, secondly blueberries. Hence the seasonal aspect. Eating as well as working in the patch results in incredible, under the skin, itch in the forearms. Advil is the quick fix but the cause seems to be a reaction.

[Lotsietutank]

I have suffered with this for years. I have seen dermatologists, internal med docs, neurologists, and even an allergist. Most said stress and while on Prozac...another said itching was a symptom of Prozac. Two years ago....an allergist told me it could be allergies. So he placed me on Claritin....it is the only thing that has ever helped. I take 3 to 4 claritins per day but I still have big bouts with itching. Finally I found this post...Since finding it, I have read a lot more. What is working for you all? Where should I start?

[ginnie]

I am glad that something at least is good. Doctors are starting to pay attention to this. My mother had something like this for many of the last years of her life. (30 years ago) They always told her it was all in her head, making her feel really bad. It wasn't in her head. I appreciate this thread, as now I know what my mom most likely had. I hope relief and a cure can be found. ginnie