Tags
Conditions and Diseases, dysesthesia, Fibromyalgia, fibromyalgia and itching, Itch, Lyrica and itching, women and fibromyalgia
After nearly three-hundred days of prickly, burning, body-wide itching, I may have found relief. I say “may” because I’m not sure yet.
My first post about the onset of this itching was last February 11. The itching started on January 31, out of the blue, a day after my left hand turned blue for the first time.
Since then, in case you haven’t read about this before, I’ve seen two dermatologists, one allergist, one internist, one rheumatologist, one chiropractor, one infectious disease specialist, one Chinese acupuncturist, one Chinese herbalist, two cranial sacral therapists, one massage therapist, and one healing touch therapist.
Capped off by a comprehensive workup at Mayo Clinic two months ago by a third dermatologist, coming home with the diagnosis of Idiopathic Pruritus, itching with an unknown cause.
From each health care professional, I received different diagnoses and treatments. I encountered the West versus East clash. While our traditional Western treatment of a health problem is a prescription, the Eastern practitioners view medications as toxins. It was common for me to get a new medication in the same week as I was told I should not be taking it.
After I came home from Mayo, I decided I was through with physicians. I relied more and more on Eastern approaches. But with no relief.
My chronic itching ratcheted up over the Thanksgiving weekend. For no good reason. It was one of my best holidays ever; I had my two oldest grandchildren (young adults) and two youngest (under four) at my family of origin’s celebration for the first time.
So, last Sunday night, after all the festivities were over, I had yet another talk with myself. How could I go on? People had been asking me that every day since the itching began, and I’d answered that the only way I could live with it was to maintain hope that eventually it would go away.
I know I subsisted on denial, the psychological defense mechanism that something this awful could not be happening to me. After all, I already was dealing with the chronic pain of fibromyalgia. Could it be I would have to learn how to deal with chronic itching too?
Of course I don’t know what God has planned for me, but I believe he gave us our brains to figure out how to cope with life’s problems. And since I wasn’t coping well at that point, I had to admit that God had given me the grace I needed to withstand the almost incessant prickly, burning, body-wide itching for the previous ten months. He also gave me my husband who has stood by patiently, ready to scratch when, as I told the doctor at Mayo, I’ve been on the verge of going berserk.
About using our brains: after my post about my Mayo Clinic visit (October 7, 2013), I’d searched the web for “itching and fibromyalgia,” and providentially (you may consider it chance or serendipity) discovered a blog by another retired nursing professor, Barbara Keddy, PhD, RN, titled “Women and Fibromyalgia.” Way back on August 7, 2008, she’d written a post about her short intense bouts of itching.
Read her informative and most helpful article here.
My mind sucked up her words. Could it be that my itching was related to my fibromyalgia?
After I read her post, I scrolled down and read the comments. Dozens of women living with fibromyalgia had responded. All had horrendous bouts of itching. All seemed to feel about as berserk as I have.
I could not believe that I had never thought my itching could be related to my fibro. But then none of my health care professionals had connected the two either.
With hope renewed, I emailed Dr. Keddy. She wrote back saying she’d gotten more responses to the post on itching than any other and was continuing to get them.
So, last Sunday night, as I was thinking about what I could do next, I decided to go back to the rheumatologist who diagnosed my fibromyalgia in 1999. She’d moved her practice, my insurance had changed several times, but no matter.
I called Monday morning at one minute past nine. What if the receptionist would tell me her first opening was three months off? I didn’t dare think about it. I was not certain how I would keep my sanity.
Maybe only those who’ve had chronic itching will understand that feeling. You could say I was at a very prickly, rock bottom.
“I have an opening tomorrow,” the receptionist said cheerily. Wow. I was shocked! Providential? I believe so. I sailed through the day on a surging wave of hope.
On Tuesday morning, after a few pleasantries with the rheumatologist, I said, “I have one question. Have you ever seen itching with fibromyalgia?”
“No, I never have,” she said, nonchalantly. “Why?”
I felt my breath stop, my face go pale, my hope plummet. What next?
I attempted to explain. Then elaborated on all the diagnoses I’d been given in the past months. She grabbed one: dysesthesia.
“That’s just part of fibromyalgia,” she said, nonchalantly again as if everybody would know that. “I can see how you experienced that as itching, but it is not a skin condition.”
Just. Like. That. Itching, part of fibromyalgia. I’d never connected the prickly dots.
We went through the medications I’d tried. She said, “I’d like to you to try Lyrica.” Duh! In the U.S., we see Lyrica ads for fibromyalgia on TV every day. It’s not as if I wasn’t aware of it.
So, last Tuesday night, I started on Lyrica 50 mg at bedtime. Each morning since, I’ve awakened without buzzing bees or fiery ants fighting (or partying) from scalp to shins. No fracas taking place in my flesh! No more dashes to the bathroom to douse myself with Calamine lotion, Gold Bond powder, Eucerin or Aveeno lotion, Vanicream, Triamcinolone cream or Johnson’s baby oil before I could start my day.
The relief, though, has lasted only a few hours each morning. But, tomorrow I add another 50 mg in the morning, and the following week another 50 mid-afternoon, until I’m up to 150 mg every day.
I will continue to hope, and to pray to God, for relief. And I thank so many of you for your empathy these past three hundred days! If you are a fellow sufferer, know that I understand. I get it.
By the way, last week I also had a third episode of my left hand turning blue. A friend asked if I had a new setting for my diamond because it looked so nice. “No,” I quipped, “It probably looks nicer because of the blue background.”
Humor helps. Life is all about fun and games, isn’t it? And using our brains to try to win. A least some of the time.
Lois, I’m celebrating this new hope with you! Praying it will bring an end to both the itching and the chronic pain. I’m reading Ann Voskamp’s new book, The Greatest Gift: Unwrapping the Full Story of Christmas. I wanted to share the last part of today’s reading with you. It’s titled, “December 9, Never Undone.” “If the worst things work for good to a believer, what shall the best things?” writes Puritan Thomas Watson. “Nothing hurts the godly…all things…shall co-operate for their good, that their crosses shall be turned into blessings.” If God can transfigure the greatest evil into the greatest Gift, then He intends to turn whatever you’re experiencing now into a gift. You cannot be undone. Somewhere, Advent can storm and howl. And the world robed for Christmas can spin on. You, there on the edge, whispering it, defiant through the torn places: “All is grace.” The word that stands out to me is defiant…assertive…sounds like you. Keep being defiant in the torn places. I know you can. Love and Prayers, Amy
________________________________
LikeLike
Thank you, Amy! Ann Voskamp’s quote of Watson’s words today are appropos and another example of providence, that you should be reading them on the same day as my post that addresses the need to rely on the hope and grace God gives us to withstand trials in our lives. As I look around, I see folks dealing with much more, and I’m exceedingly thankful for what I can still see, do, and and enjoy. Being defiant in the broken places. I like that! Blessings to you! Lois
LikeLike
Fingers crossed that the relief continues!
LikeLike
Thanks loads, Gary. Need all the help I can get. Hey, I signed up for Adam’s Passive Investing course for spring. Just can’t stay away, I guess.
LikeLike
Lois:
I do hope this medication finally eases the itch or whatever it is–doesn’t matter what it’s called as long as it goes away.
An early Christmas present for you. And Marv.
LikeLike
If it lasts, it surely will be a grand present. Thanks for the good wishes!
LikeLike
Sure hope and pray that you have found a permanent relief to your ‘itching’. Who would have thought ‘connecting the dots’ was such a hard game to play?!
LikeLike
Nuts, huh! And I hope I’d through playing games, but who knows what other games I might yet have to play in the future!Thanks for prayers.
LikeLike
Hi, Lois. I’m glad you may be on to something that will work. As another red herring, that has no value re treatment, I was recently researching post-polio syndrome since I am writing about that and learned that many post-polio syndrome patients have been diagnosed with fibromyalgia. I know a lot of women our age who have fibromyaligia, and after learning that many polio survivors our age were not treated or were “hidden” because their parents did not want to send them to a public hospital, I wonder if your disorder might have begun with polio. It won’t make an difference with treatment, it’s still the same mess, but it might be a thread worth pursuing as to how post-polio syndrome is treated. I thought I was the only person traumatized by hospitalization for polio, but I realize that there are a huge number out there who were diagnosed and treated, but many who were never diagnosed nor treated. I don’t know which was worse. Ann
LikeLike
Ann, That is quite a discovery. I have no inkling of having had polio, but I was bedridden for a month my sophomore year in high school (1957), ostensibly due to mono. More to think about. And it’s way too awful to think of post polio victims now having to face the threat of fibro. I hope we grow old and happy and mostly sx free together! Lois
LikeLike
Sounds like you are on the right track! Hopefully you’ll get even more hours of relief with the dosage increases. How did it go today?
LikeLike
I’m rather tipsy today, the first day of a morning dose. Dumped over my coffee at Caribou. Thankful for young folks who cheerfully mopped up and replaced my latte. Trying to keep alert so no more spills today!
LikeLike
Fingers crossed that this works for you, Lois!
LikeLike
I always keep this in mind with current flares!
LikeLike
I didn’t notice that this was so many years ago. Glad it was so long ago and hope it never comes back!
LikeLike
Me too! Thanks, Susan.
LikeLike