Trying To Shed Light On His Unusual Itch, RPB Man Helps Form Global Alliance

It’s 3 a.m. You haven’t had a decent night sleep since the flare up. You have to work tomorrow; no choice but to force yourself to sleep. Then a nightmare, something bad and electrical is starting to happen deep in your arms. Pins, needles, burning, tingling. You can’t relieve it by scratching, but in your sleep you try anyway. Now it feels like someone is injecting acid into the veins of your forearms. You twitch, feel electrical zaps, try scratching again, violently this time. In half sleep, you now feel the sensations of a phantom army of stinging red ants impossibly burrowed into your arm. You scream yourself awake, but the horror doesn’t stop. Your arms are scratched bloody. Your sleep-deprived mate is looking at you like you are crazy. Worst of all, that horrifying deep itch is still there.

That describes what is happening to me and thousands of others. I have brachioradial pruritus (BRP), an affliction of the nervous system, so underreported that your doctor has almost certainly never heard of it. That’s my purpose in writing this. I want doctors of Floridians who get a lot of sun to know about this unusual condition.

I have been a freelance reporter for the Town-Crier off and on for 25 years. I handle pain well. As a U.S. Coast Guard lieutenant, I served steadfastly in harm’s way as a first responder to everything from ship fires to chemical spills. I have taken hard punches in the face as an amateur boxer. I’ve undergone painful bone fusion surgery. I once even walked away from a U.S. Marines helicopter crash and went on with my mission, but I have never in my life ever experienced anything as miserable and terrifying as brachioradial pruritus.

That’s simply Latin for “top-of-your-forearm itch.” It’s more of an itch sensory hallucination. I prefer to call it “the Dante’s Inferno Eighth Circle of Hell Itch,” which medieval author Dante elegantly describes, “the burning rage of fierce itching that nothing could relieve.”

The Cleveland Clinic warns, “If you have the urge to scratch your forearm, or you feel like it’s tingling, you might have brachioradial pruritus. Sun exposure and spinal issues might be at fault. Treatments range from ice packs to physical therapy to medications and possibly surgery. Brachioradial pruritus is a nerve disorder that causes itching, stinging or tingling sensations in the outer forearm. BPR usually affects both arms, but it can occur in only one arm [as is my case]. This condition is not contagious.”

No one knows how common it is, but thousands of people who scratch themselves raw have flocked to online support groups, all describing the same symptoms of unbearable and sometime debilitating deep arm itch.

“I feel like I was going insane, and no one could relate or understand what I’ve been going through for the past 5 or 6 years,” said Gretchen Smith, who works in the Palm Beach County yachting industry at Rybovich Marina. She gets lots of sun sailing the world and working in shipyards.

Dan Judkins is a self-described deep thinker and tradesman from Australia. “I have been suffering from BRP for half my lifetime,” he said. “BRP is an untamable, unpredictable, relentless beast. It strikes me in my sleep and leaves me with blood and tears. In moments of BRP-induced madness, I have fantasized removing my limbs by any means possible. Unable to reach REM sleep. Unable to hold down steady work. Unable to keep a positive attitude. This is a beast that rules me.”

He isn’t alone. Online support groups contain about 2,000 people all describing the same maddening condition.

Neurologists call it a “neuropathic itch.” BRP is like a broken burglar alarm. Sun damaged “itch nerves” keep sending the brain a false signal of deep itch, and your brain tells you it’s something that needs scratching.

The state of the science is so bad, that according to Dr. Atul Gawande, a surgeon and writer for The New Yorker magazine, neurologists didn’t discover a separate “itch nervous system” until very recently. A 1997 paper details discovering a certain type of nerve that was specific for itching.

The literature on BRP is sparse. While the medical/research community regards it as “rare,” simply searching the web for “deep arm itch” has led me and more than 2,000 other folks to various BRP online support groups.

Nikki Wheetman in the UK is the kind soul who runs the world’s largest BRP support group, where she ministers to 1,629 of us who have come in desperate search of relief, or at least for answers.

“I didn’t actually create the Facebook brachioradial pruritus group,” she said. “I found it at 3 a.m. one morning when I was desperately searching for answers while strapping bags of frozen peas to my arms. The first thing most of us learn is that ice is our most reliable form of relief.”

Wheetman has managed the support group for six years with a passion.

“I spent every minute of my life learning and researching BRP and taking as much info as I could to the group,” she said. “I had BRP very severely, so I know only too well how dreadful it can be, and how desperate people become. Most doctors either haven’t heard of it or dismiss it as an allergy, or give a wide range of misdiagnoses, such as scabies, eczema, all manner of allergic reactions, and when people report numb fingers with pins and needles and electric zaps, or the feeling of millions of insects crawling and biting (this change of sensation is known as formication), the doctors frequently misdiagnose carpal tunnel. People have had surgery that maybe they didn’t need. This condition is very scary.”

Wheetman is determined not to end up “elderly, itchy and ripping my arms off and nobody believing me, as that’s what happens to so many older people. They end up being patronized and pacified and no real help given.”

More than 100 BRP patients around the world responded to my requests for information. The most common reported experiences are misdiagnosis, misunderstanding and marginalization.

Sufferers from around the world sent me their stories: “My air force doctor didn’t believe me.” “My physician sent me to an allergist.” “My doctor can’t tell the difference between neuropathic itch and neurosis.” “My doctor says it’s probably stress-related and to try calamine lotion.”

Simone Rucolas from Connecticut said that is a quality of life issue that no one quite understands. “Doctors literally look at you like you are crazy, and the ones who do show any empathy and try to help, just throw Big Pharma drugs at you, which in the long run cause all sorts of other damage, but the itch will still be there,” Rucolas said.

The great majority of BRP sufferers polled are self-diagnosed. The Cleveland Clinic web site describes ice as a diagnostic tool. If the itch responds to little but ice, it might be BRP.

Shannon Gruidl was more fortunate than the great majority of sufferers, who have a hard time finding a physician familiar with BRP. She is a licensed occupational therapist who went through a variety of misdiagnoses and conflicting treatment advice until being diagnosed at the Mayo Clinic by the dermatitis department. Coincidentally, the Mayo Clinic conducted an internal census and concluded that it only diagnosed about 120 cases over 10 years.

Getting diagnosed is only half the battle. There is no easy cure. Many patients are given a powerful nerve blocker, but these strong drugs create drowsiness and other side effects. Besides freezing their arms with ice, many patients try to block out the itch with burning agents like capsaicin, the chemical that makes jalapeños hot, or with topicals like camphor and menthol. Others achieve a similar effect using strong solutions of camphor or menthol. Antihistamines have no effect.

The two suspect causes are sun damage and nerve pinching. Patients are advised to avoid sun, and many sufferers are given MRIs to check for a pinched nerve where the nerves leading to the arms branch off in the area of the fifth and sixth vertebrae. Some have surgery.

Marcee Katz, an executive in California, recently had her second steroidal epidural injection. “This time my doctor went a bit deeper into C5 and C7,” she said. “My itch has definitely lessened since my first injection on Sept. 29. I would say 70 percent better. I have also been using the TENS machine [electrical nerve stimulation] nightly for 30 minutes before bed. I have used the capsaicin as well a few times. It burns like hell, but the next day, no itching. Good news is that I have not used ice at all lately. No itching the last few nights. I’m praying it stays away!”

As a freelance journalist and BRP sufferer, I was granted a kind welcome in all three online peer-to-peer BRP support groups. Repeated requests for interviews with the Cleveland Clinic and Florida’s largest network of neurologists went unanswered. If a skilled reporter has a hard time finding a doctor willing to be interviewed about BRP, imagine the plight of sufferers seeking understanding, diagnosis and relief.

Debbie Shay is 60 years old, fair skinned and lives in the Midwest. “I suffer from this horrible affliction,” she said. “The itch is so intense that I fantasize cutting my arms off or using a sander to remove the skin on my arms. It is absolutely the worst itch imaginable.”

BRP affects not only thousands of patients, but their families as well. Angel Tansley’s husband has BRP. “At the peak of an episode, seeing my husband on the verge of tears, seemingly at the brink of insanity, as he tore his arms to pieces desperately trying to sleep and keep them as cold as possible, I would lay there unable to do anything for him, frustrated and upset that I couldn’t do anything to help the person I’d vowed to care for in sickness. Anger that no professional could offer any more advice or treatment and give my kids back their dad. We just sit and wait for him, wait for the episode to be over, wait to resume something that resembles normality,” she said.

Many others suffer alone. “BRP is the worst thing I’ve ever experienced. I never even heard of it until I got it,” said Lori Perkins, a 64-year-old business owner and kind soul from Michigan. “There is zero relief. It comes when it wants to — no rhyme or reason for the most part. Severe itching/pin prick pure hell,” she said. “I think to myself, will I have this the rest of my life? I know it’s a ‘phantom’ itch — it’s the nerves… I know this, but I still scratch until my arms bleed, then all I can do is cry. There has to be a solution. I live alone, so no one else is involved in my private nightmare of BRP.”

The medical community knows shockingly little about it. Scientists think the cause is a combination of UV damage to itch nerve receptors in the arm, along with perhaps a short-circuited pinched nerve someone between the spine and upper arms. Most patients are elderly and might have arthritis causing pressure on the brachioradial nerves, but I interviewed a woman in her 30s who has had BRP for 10 years.

So, while the science is weak on itch in general, one thing that is crystal clear is the emotional toll. More than one BRP sufferer put it this way, “I have thought of suicide in some of my worst flares, it’s so controlling and consuming.”

As a science writer, I am aghast at the horrible state of the research on BRP. As a journalist, I am shocked that thousands of people flock online with the same symptoms and about 90 percent report misdiagnosis and marginalization. I have never been more motivated to use my training as a scientist and experiences as a lobbyist, advocate and communicator to help shine light on this community that might be larger than anyone imagined.

In coordination with Nikki Wheetman, and thanks to volunteers like Angel Tansley, the world’s first BRP a web site at www.brpalliance.org launched this week, advocating on behalf of patients.

In the first 72 hours of being formed, more than 100 people affected by BRP joined the BRPAlliance.org, an effort to organize the thousands of marginalized BRP sufferers into an advocacy organization. Our ultimate goal is to work closely with the research and medical community to create better global awareness, diagnosis, research and treatment for brachioradial pruritus (BRP) and neuropathic itch.

So, if you are a BRP patient reading this, have hope and join us. We are organizing now, perhaps into a Palm Beach County-based nonprofit, where we can try to partner with the neuroscience hub here. Kind people at the world’s smartest neuroscience institute are already helping us behind the scenes.

If you are a medical professional who wants more information or to get involved, visit www.brpalliance.org. If you are a neuroscientist tired of going along with the crowd and studying uninteresting stuff like brains, and want to make a mark for yourself instead by finding the cure for the sexy disease of neuropathic itch, the world’s BRP community wants to hear from you at www.brpalliance.org.