1995: The end of life as I knew it:. I began experiencing excruciating burning pain in my hands, arms and legs. In 1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: unexplainable, unverifiable and in all probability psychosomatic. Their unofficial diagnosis was “Hysterical Middle Aged Woman’s Syndrome”.
Doctor after doctor, told me, test after test after expensive test came back negative, that nothing was wrong with meand to go home and “Get a life”. Some looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychology” – Wink, Wink. The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.
I just wanted someone to put a name to what I had. Gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors, Yup you are reading right! They are ALL in the plural. I didn’t just see one of each. I saw private practitioners, researchers, and heads of hospital departments. I’m sure each of them wrote “HYPOCHONDRIAC” on their charts.
Over two-plus decades later I’m no longer middle-aged, just hysterical. I still struggle and some mornings I wake up feeling like a locomotive hit me and the bottoms of my feet on fire even tho the only thing they touched for 7 hours was a sheet. BUT now that the pharmaceutical companies have realized there’s over 10 million people, in the United States alone and millions more world-wide, with this condition the research is progressing.
Fibromyalgia and chronic fatigue/ME are finally recognized “officially” as an illness. The research now points to the possibility these conditions are auto-immune, neuro-inflammatory disorders in the brain.
Those doctors were right after all — it IS all in my head!
Haven’t drawn for months as I stopped going to art class when I fractured my ankle (couldn’t drive). The fall semester of classes just started and I was curious to see if I’d lost all the progress I’d made.
I was even more curious to see how my energy held up since the fractured triggered the worst of all my fibromyalgia symptoms. My arms hurt during the 1 minute poses – probably because I was drawing furiously, holding tight to the charcoal, trying to stay in the saddle.
During these 5 -10 minute poses I slowed myself down to a trot.
Charcoal (The model isn’t as volumptuous as I drew her)
Charcoal (See? She’s quite svelte)
With this chronic condition I’m continually weighing the pain & pleasure ratio, trying to decide if the pleasure I get from activities is worth the ensuing pain.
Those of you who have followed this blog or CATNIPblog know I was diagnosed with fibromyalgia in 1996. That’s approximately when my battle with eating too much – preferably carbohydrates mixed with liberal doses of refined sugar – began. I eat constantly throughout the day. If I’m bored, depressed, upset, happy, sad, tired, excited, I eat. My theory was I was self medicating, creating a dopamine surge in my brain to dull the fibro pain. Mice are now disproving my rationalization. Mice of all things. Who knew?
The Mouse “Knows” by judy
Penn neuroscientists have found that animals’ brains can suppress feelings of chronic pain when they are hungry.
The study, which was published in the science journal Cell, found that temporarily shutting down chronic pain is part of animals’ survival behaviors when searching for food.
According to a press release, approximately 300 neurons are capable of shifting the brain’s focus to hunger, thus eclipsing the effect of chronic pain.
The researchers apparently didn’t set out expecting that hunger would influence pain sensation so significantly, but when they saw these behaviors unfold, it made sense to them. “If you’re an animal, it doesn’t matter if you have an injury, you need to be able to overcome that in order to go find the nutrients you need to survive.”
Experiments were conducted on mice and found that compared to their well-fed counterparts, hungry mice had less of a response to inflammatory pain. The effect of hunger on mice is similar to that of an anti-inflammatory painkiller, the report said.
The Penn team also discovered that the neurotransmitter NPY is primarily responsible for selectively suppressing pain responses. This research could potentially be applied in humans to ameliorate chronic pain after injuries and serve as an alternative to opioid medications.
Naked Mole Rat sez: “At your service. We rodents are here to help”.
I’ve written many posts about my history of fibromyalgia, just not recently.
My “foot episode” has caused a bit of a fiber flare-up, just in time for National Fibromyalgia/ME Chronic Fatigue day on May 12th.
Here’s my story and I’m sticking to it:
In 1995 I contracted an invisible “illness”. Out of nowhere I experienced excruciating burning pain in my hands, arms and legs followed by years of gastrointestinal, cardiological, dermatological and emotional symptoms. At the onset I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying swings between happy to annoyed – which I’m minimizing for public consumption.
Back then fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: Unexplainable, unverifiable and psychosomatic. It was a Hysterical Middle Aged Woman’s Syndrome, as doctor after doctor told me. based on test, after expensive test coming back negative. I was told nothing was wrong with me and to go home and “Get a life”.
Forever imprinted in my memory is an appointment with the chief of neurology at one of Los Angeles’ major medical schools (the doctor and medical center shall remain nameless because this is a true story) He reviewed the test findings, looked at me knowingly – as if we shared a secret – and said, “You’re a psychotherapist. You know about psychological issues”. He leaned forward, compassionately touching me on the knee and winked, “Go home, live a good life and take up a hobby like kick-boxing.” The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.
I searched for anyone –gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC. I looked fine, acted fine, and thousands of dollars of medical tests came back negative. All I took away from the 100’s of doctor’s visits was a stack of psychiatrist’s cards doctors handed to me on the way out of their office.
After years of pain, escalating exhaustion, depression, countless doctors and tests I did qualify, on all counts, as a hysterical middle-aged woman .
Well over a decade later fibromyalgia was recognized by the medical community as “real”. Current research indicates it might be a neuro-inflammatory/auto-immune disease impacting the central nervous system. No one knows for certain and there is no current cure.
I’m no longer middle-aged or hysterical.
But the doctors were right – it is, all in my head.
Why, when you tell someone who is ill that they look good, they’re offended?
Practical ways you can encourage someone who is ill.
May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS.
“A hot bath is the original hydrotherapy — water treatment — and still the best. Immersion, buoyancy, heat, and vibration (if you’ve got jets) all have useful biological and sensory effects, many of which are useful to people with injuries, pain, anxiety, depression, and more”.
1. Don’t make it too hot. Hot baths are a soothing escape, but too much heat will stimulate the nervous system. While you may feel tired ,you are not as relaxed and may not be able to sleep for a while.
2. Cool your head–or feet. Sticking your feet out of the bath lets off some excess heat, while keeping the benefits of a raised body temperature. You can also pour cool water on yourself . This will help you to feel better after the bath.
3. Do some self massage in the bath.
4. Stretch in the bath. The warmth decreases muscle tone, flexibility is increased and the buoyancy makes me stretches easier.
5. Drink water-you will sweat in a hot bath (which helps eliminate waste from the body). Drink before and after. Being dehydrated can make you grumpy.
6. Baths are a great treatment for muscle soreness. The heat gets in much deeper than using a heating pad/pack. They are especially good for low back pain. Most low back pain is muscular, especially “knots” in muscles, which a hot bath can ease.
7. Try deep breathing-it may increase your relaxation. Not slow breathing but deep and strong.
My human is finally feeling more normal . . . as least for her as I’ve never been completely convinced she was “normal” to begin with. The virus that took up residence in her body at end of December lasted for a month . . . and then triggered fibromyalgia symptoms.
The good news was Canines don’t catch human virus.
The bad news was nothing I could do would persuade her to let me take her for walks.
For all my fans I found this very short video that explains some disconcerting flu facts . . . for humans
Skunk Bear YouTube
The CDC says she was contagious one day before she started feeling sick and up to seven days after. If you’re a kid, elderly, or have a weak immune system, you can be contagious for even longer.
She’s no kid but she is elderly and has a weak immune system so for all I know she’s still contagious. When I take her on walks I’ll keep her on a short leash.
Heart disease, not cancer, is the #1 killer of women. I learned that and other invaluable information on Carolyn Thomas’ My Heart Sisters blog.
Over the years I’ve “stolen” and reposted many a wonderful post from Carolyn Thomas. Her blog, Heart Sisters, has been one of the few I’ve followed for years. I have forgotten what led me to her blog but once I read both her compelling stories and the up-to-date information on women’s health, in particular heart disease, I was a Carolyn-groupie.
Apparently Johns Hopkins was a groupie too when they asked her to write a book on Living with Heart Disease. My guess is that her down-to-earth writing coupled with up-to-date research and information appealed to Johns Hopkins as much as it did to me.
Here’s just a sample of info found on Carolyn’s blog:
“Did you know: Women generally fare far worse than men after experiencing a cardiac event? One possible reason is that it can be confusing to make sense of warning symptoms when they do hit. Women are also less likely than our male counterparts to seek immediate help at the first sign of cardiac symptoms. Instead, we end up:”
toughing them out
waiting to see if they go away
blaming them on stress, muscle soreness, indigestion or other less serious non-cardiac causes
I can’t say enough good things about Carolyn – you’ll have to read her book and her blog to see for yourself what fabulous advocacy and education Carolyn has provided since her own “widow-maker” heart attack. (Full disclosure: we are not related, I’ve never met her in person, and I don’t get a kick-back!)
Buy a copy and give the gift of life to a woman you love . . . maybe it’s even yourself
Save 20% when you use the code HTWN when you pre-order the book from Johns Hopkins
“[A Woman’s Guide to Living with Heart Disease] gives women the knowledge they need to become their own advocates in a health care system that continues to be weighted against them.”
— Foreword Reviews
“This book brings a needed focus to a leading killer of women today and is a must-read for women and their loved ones.”
— Library Journal
“If you are a woman, or love a woman, this is a book for you! Cardiovascular disease is the leading killer of women. Here is a book focused on women’s cardiovascular health. It is all here—prevention, diagnosis, and treatment. Read it for the people you love.”
— Edward K. Kasper, MD, Johns Hopkins School of Medicine, coauthor of Living Well With Heart Failure: The Misnamed, Misunderstood Condition
“This work is an important contribution to the discussion about heart attack and misdiagnosis in women. Thomas’s personal story—alongside the stories of millions of other women—provides a needed reminder of recognizing one’s symptoms, avoiding denial, and seeking medical attention. This elegant book is a unique addition to women’s health books and a necessary read for women and the people who care about them.”
— Roger S. Blumenthal, MD, Director, The Johns Hopkins Ciccarone Center for the Prevention of Heart Disease
Thank you Carolyn for pushing through your own symptoms to write a book of this magnitude.