A WARNING for You and HOPE for Me

I’ve written so many times about my Fibromyalgia (ME)/Chronic Fatigue symptoms that they bore even me. However . . .  COVID-19 symptoms and Fibro/Chronic Fatigue symptoms have an eerily similar overlap.  Some people who have had COVID-19 are experiencing a slow, protracted recovery with chronic, unremitting exhaustion, body aches,  mental fog, strange dermatological sensations or rashes, gastrointestinal issues,  irregular heartbeats, depression . .  

“COVID-19 may produce a lot of ME/CFS-like cases. Will we be able to use them to understand ME/CFS?
A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds one of ME/CFS.  For one, it’s causing weird symptoms (loss of smell and taste, buzzing, electric, vibrating sensations, red/purple faces, purple toes, pink eye, digestive issues, nausea, dizziness, cognitive issues) that aren’t usually associated with a virus.”
“The director of infection prevention and control at Mount Sinai Hospital attributed the weird fizzing-type sensations to the immune system acting up:

Immune Responses
“Our immune cells get activated so a lot of chemicals get released throughout our body and that can present or feel like there’s some fizzing. When our immune response is acting up, people can feel different sensations… I have heard of similar experiences in the past with other illnesses”.’

My own immune system is in chronic overdrive with chronically elevated. cytokine levels.   When I first read about the COVID-19 cytokine flooding that causes organ failure with viral infections I immediately went into isolation – weeks before anyone even suggested isolation. 

THE WARNING:

“It leaves something inside you – and you never go back the way you were before.”  Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS.”

Charcoal on paper by judy

“Paul Garner, an infectious disease professor, and Director of the Centre for Evidence Synthesis in Global Health, and Co-ordinating Editor of the Cochrane Infectious Diseases Group, knows infections on both a personal and professional level . During his tropical infectious disease research, he came down with malaria and dengue fever, but nothing he’s encountered has compared to his bout with COVID-19.
In the British Medical Journal Garner, called post COVID-19 a: “a roller coaster of ill health, extreme emotions and utter exhaustion.”
Garner doesn’t appear to be describing post-COVID-19 illness so much as he’s describing a descent into ME/CFS. All the hallmarks are there – the post-exertional “malaise”, the delayed and mind-boggling symptom flares after little exertion, the inability to understand his limits, Garner talked about the “apparition”, a semblance of improved health that kept getting smashed as he innocently overreached.
“People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms and their unpredictable course.”

“Some of the longest-suffering Italians are finding themselves in physical and financial uncertainty, unable to shake sickness and fatigue and get back to work.”
“We have seen many cases in which people take a long, long time to recover. It’s not the sickness that lasts for 60 days, it is the convalescence. It’s a very long convalescence.” Alessandro Venturi, director of the San Matteo hospital, Pavia, Italy.”

“Another doctor noted that after all the different, initial symptoms were gone, it was the fatigue that remained. That rang bells. Early studies of the ME/CFS outbreaks came to the same conclusion: the early symptoms were often different but the fatiguing state that ultimately remained was quite consistent.”

 MY HOPE

“Because we generally, in the past, haven’t taken viruses seriously, we simply tell patients to ‘go home and rest up’. The significant fraction (which might be as high as 1-10%) of patients who do not recover normally after infection have often been marginalized and forgotten.”
This time there may simply be too many unrecovered patients for the NIH and other medical funders to ignore. 
“An unexpected element is a growing number of reports that even people with mild Covid-19 illness, who didn’t go to hospital, are experiencing long-lasting symptoms. Some people infected in February or March are still being ambushed by extreme fatigue, headaches, sudden breathlessness and problems concentrating or doing even light exercise.”
Many will probably recover, but if COVID-19 patients go the way of past Ross River virus, Coxsackie B, Giardia and SARS patients and others, a subset will remain quite ill.”

So, you ask, What’s HOPEFUL about THIS?


The Open Medicine Foundation Launches International ME/CFS COVID-19 Study
Research into Fibro (ME)/Chronic Fatigue has had few funds for  research even though there are estimated tens of millions of people in the world with that diagnosis.  
But now the entire world is focused on COVID-19. More research in a shorter period of time has been put to work on COVID-19 than ever before. With hundreds of thousands of people potentially coming down with post-infectious illnesses, there’s an opportunity to include fibro/chronic fatigue into the biggest, single medical research effort ever.”

The Open Medicine Foundation (OMF) will produce an international effort to understand how COVID-19 turns into ME/CFS. The OMF’s four-site COVID-19 study (Stanford, Harvard, Canada, Sweden) will collect body fluids, do continuous health monitoring using wearables, and collect symptom data over two years. Its genomic, metabolic, and proteomic analysis will attempt at the molecular roots of ME/CFS as it occurs.

“With the NIH otherwise occupied, Open Medicine Foundation’s COVID-19 research effort is our best chance at helping both people with ME/CFS and COVID-19 patients who are having trouble recovering. In fact, it’s the only effort going right now that seeks to directly understand and help the possibly many people, who, after surviving COVID-19, find their lives unalterably changed.”

Your Warning and My Hope:

Stay Vigiliant.  Be Safe.  Wear a Mask.  Social DIstance.  Stay Isolated if possible.  

Don’t think because you are healthy now there can not be long term consequences . . . and I’m speaking from experience.

judy

 

Click here For a list of other post COVID-19 efforts/studies that are underway and the full article

Do you have Zoom Fatigue?

On my fourth zoom meeting I kept my video off. It was strangely calming not to have others see where I was looking or looking at me.  

No matter how many times I’ve written about the level of fatigue I feel it still seems unbelievable, inconceivable that such a thing could exist.  But it’s real.  I have Post Exertional Malaise – Malaise being a fancy French word for what I experience as exhaustion.  It’s a symptom that some people experience with fibromyalgia/chronic fatigue.  Without going into the theories of what causes it – any energy expenditure – physical, mental, emotional, including intense focus – exhausts me, often for days.  

 Zoom meetings are now added to the list of what exhausts me.  Distractions, during in-person conversations which are relegated to background, swirl around in the foreground of my brain:  The small audio delay contributes to people talking over each other or weird silences, visual cues are distorted or magnified,  people fiddling with controls, some sitting too close, some too far from cameras, background noise . . . exhaust me but I thought too weird to admit to anyone.    judy

judy by Judy

Low and Behold when I read this article it was a hallelujah moment!

What’s ‘Zoom fatigue’? Here’s why video calls can be so exhausting
by Ryan W. Miller

“As social distancing remains in effect across the country during the coronavirus pandemic, people are moving from one video call to another. But there may be an unintended effect, mental health and communications experts warn: “Zoom fatigue,” or the feeling of tiredness, anxiousness or worry with yet another video call.”

Why are we all experiencing ‘Zoom fatigue’?
“From having to focus on 15 people at once in gallery view or worrying about how you appear as you speak, a number of things may cause someone to feel anxious or worried on a video call. Any of these factors require more focus and mental energy than a face-to-face meeting might”, said Vaile Wright, the American Psychological Association’s director of clinical research and quality.

“It’s this pressure to really be on and be responsive,” she said.

According to Jeremy Bailenson, the founding director of Stanford’s Virtual Human Interaction Lab, the platforms naturally put us in a position that is unnatural. A combination of having prolonged eye contact and having someone’s enlarged face extremely close to you forces certain subconscious responses in humans.

“Our brains have evolved to have a very intense reaction when you have a close face to you,” he said.

During normal, in-person conversations, “eye contact moves in a very intricate dance, and we’re very good at it,” Bailenson said. When one person looks one way, another changes where they look. A small eyebrow raise from someone at one end of the room can trigger a glance between two people on the other. But typically, we don’t stare into our colleagues’ eyes, up close on a computer screen, for an hour at a time.

So much of human communication is through these nonverbal cues that can be either lost or distorted in a video conference.

“In a way, we’re closer but we’re still communicating through this weird filter, so it gets tiring to get to the real stuff through this filter,” Degges-White said.

For video calls with old friends or virtual family reunions, the forced structure can create different challenges.

“A lot of us are thinking I want social stuff to be fun and having to be locked in front of this computer … it’s just not how I want to be spending my time,” Bailenson said.

Degges-White described it creating a structure to conversation like email. One person speaks and everyone takes their turn and waits to reply.

“That’s not normally the way we do social interactions,” she said. “It’s not that easy give and take.” Side conversations are lost. Some people who are naturally reserved may never get a word in. Others may get distracted by people in their house.

The context of this happening during the coronavirus pandemic can’t be lost either, Wright said. We’re worried about loved ones but apart from them physically.

How do you combat the ‘Zoom fatigue’?

Degges-White suggests:

  • Set ground rules before a call. ‘Can we just go audio only?'”
  • Only the person speaking has their video on. And at least for one meeting a week with his team, he says they all keep video on the entire time to have that shared sense of being together.
  • If you’re uncomfortable with how you look on camera, it’s worth spending time adjusting your settings and trying different lighting in your house, 
  • If you notice one person not very responsive or always turning their video off, check in with them one-on-one.  Some people don’t like to speak up in large groups.

Hallelujah, I’m not as weird as I thought . . . 

https://www.usatoday.com/story/news/nation/2020/04/23/zoom-fatigue-video-calls-coronavirus-can-make-us-tired-anxious/3010478001/
USA TODAY

Still hysterical – I’m well practiced

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 me and 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!

judy

RATS! Hunger, Chronic pain & Me

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.”

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”.

 

Who knew I’d be a “national symbol”?

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”.DSCN1413

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.

DSCN1414

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.

 Check out Carolyn Thomas’ My Heart Sisters –“You look great!” – and other things you should never say to heart patients and lots of other great posts about invisible illness.

  • 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.

This is National Invisible Illness Awareness Week

P.S.  There are hundreds of millions of people with “Invisible Illness” in this world.  Click above to  read more information.  

I have Sickness Behavior

Been curled up in a fetal position for 14 days (but who’s counting?)  My cold has traveled south  (undoubtedly looking for warmth) into my bronchials.  I don’t want to talk to anyone, see anyone, do anything and my guilty pleasures are no longer pleasurable.  The ever-present fibromyalgia fatigue has morphed into exhaustion and if I had the energy I’d invest in stock in Puff’s-plus-lotion-tissues stock options.

Bob the Blobfish sez: “If she thinks she’s got problems try being me with a cold . . .”

BUT Glory be! I’m not being a wimp!!!!  “Those feelings are a real thing called “sickness behavior,” which is sparked by the body’s response to infection. The same chemicals that tell the immune system to rush in and fend off invading viruses also tell us to slow down; skip the eating, drinking and sex; shun social interactions; and rest.”

“Those messages are so powerful they can’t be ignored,” says Philip Chen, a rhinologist at the University of Texas, San Antonio. But that doesn’t mean we don’t try. Symptoms like a stuffy nose are obvious, Chen notes, but we’re less aware that changes in mood and behavior are also part of our bodies’ natural response to infection.”

“There is plenty of evidence that having a cold impairs moodalertness and working memory and that brain performance falls off with even minor symptoms.”

“Excuses, excuses . . . “

Have a Heart, Give a Gift

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

Read 12 cardiac symptoms women must never ignore

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

Order your copy click here:  Johns Hopkins University Press 

Johns Hopkins University Press is the publisher and here’s a fraction of what has been said about Carolyn’s Book:

[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.”

“This book brings a needed focus to a leading killer of women today and is a must-read for women and their loved ones.”

“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.”

“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.”

Thank you Carolyn for pushing through your own symptoms to write a book of this magnitude.  

 

Laughter is the best medicine

The weather is changing

my body rearranging

Help! I’m in a fibro flare

Everything hurts

including my hair.

Sharon Bonin Pratt is a writer, an artist and a dear friend.  I think she also is psychic.  I’ve been not feeling great and the subject of her last post was just what I needed.  AND it’s dedicated to ME!!!!  What an honor!

Shari inspired me to look for a smile (SEE THE VIDEO).  

Here’s a sample from Sharon Bonin Pratt’s Ink Flare:

“Who can laugh without relaxing? Isn’t that why some of us (not me of course, and certainly not you, but other unnamed folks) pee their pants when laughing raucously? Losing all control is not a bad thing, even if you must change your whitie-dities, because when you’re having that much fun – who cares about all the rest? Oh, and it’s contagious! In a good way, not like the flu, but like having enough cup cakes for everyone in the world. So now I not only feel good inside my own world weary bod – I feel good because everyone around me also feels good. Motto for today: Spread cheer – laugh out loud.”

Read her entire post –  Sharon Bonin Pratt’s Ink Flare

Frankly Freddie – I found a cure for my human!!!

My Dear Human Beings and other critters,

My human has been too tired to go on walks.  All she wants to do is sit around and I’m getting bored keeping her distracted by petting me.  She blames Fibromyalgia/chronic fatigue but I’ve long suspected that she just needs a new career that is exciting.  I found the perfect cure – FOR EVERYTHING THAT AILS HER .

11796206_835121679964536_7560255879812816373_n

The CURE

There’s a woman in England who  (instead of moping around like my human being)  got a pair of feathered fans to do a routine in a bar that was holding a cabaret night.

She said: “It was nerve-wracking but exciting . . .  I felt alive. . . . Even though she’s not completely cured, her chronic fatigue only flares up every two or three months – lasting at most for a couple of days. “

She’s got big plans for the future . . . She said: “I have signed up with the alternative model agency Ugly, in London and hope to start appearing in magazines and adverts.”  (I didn’t tell my human being about “Ugly” because I’m not sure what kind of magazines and adverts want “ugly” . . . )

Freddie Parker Westerfield, CDT RET

Freddie Parker Westerfield, CDT RET

My human thinks all this is just a ploy to get her to take me on walks.  I told her if she didn’t believe me to read this:  

Woman Bedridden With Depression And Fatigue Turns Her Life Around With Burlesque Dancing

 

 

“I don’t want to talk about it”

I should go out in the garden and eat worms.  I’m exhausted.  I hurt all over.   It’s hard not to have self-pity.   I TRY to limit my public and private kvetching because I know it doesn’t help . . . me or you.  There’s scientific basis for the harm we do to ourselves when we talk about trauma – any kind of trauma. 

Acrylic on Canvas, by moi

Acrylic on Canvas, by moi

 If you or anyone you know has a “story of pain” (physical, psychological, social, economic etc) read Carolyn Thomas’ My Heart Sisters excellent post.  Here’s a teeny taste:

Rehashing a traumatic story/event does some of the following:

  • puts our system on high alert
  • triggers inflammation
  • triggers the fight/flight response
  • triggers shutdown mode

On the flip side Carolyn talks about the benefits of sharing with close friends:

“Dr. Laura Cousin Klein and her team found that the credit for women’s unique stress reactions may belong to the hormone oxytocin (also known as the “lovehormone”).  It’s the body’s own wonder drug – released when we nurse our babies, for example, as well as during a woman’s stress response. It’s instinctual, it buffers the fight-or-flight response and it encourages us to tend children and gather with other women instead – what’s called our tend-and-befriend response to stress.  This calming response does not occur in men, says Dr. Klein, because testosterone—which men produce in high levels when they’re under stress—seems to reduce the effects of oxytocin. Estrogen, she adds, seems to enhance it.”

Read the entire post “I don’t want to talk about it“- a Judy’s-Must-Read-Blog-Post.

The Ultimate DYI – I’ll make me a new pea brain

As my fibromyalgia/chronic fatigue symptoms go unabated I have asked my doctor Patricia Ahearn repeatedly to get her lobotomy certificate.  I’m sure there is week-end or on-line training for doctors.  She’s a very caring person so it’s been hard to understand why she’s been stalling.

Maybe she’s been waiting for this new research?!!!!!!

hmmm . . . speed up the evolutionary process . . . we could still rule the world . . 

Researchers Grow Nearly Complete Human Brain in Ohio Lab

“An almost complete version of a tiny human brain has been grown in a U.S. lab in a move that could bring major strides to the treatment of neurological diseases, a scientist says.
Rene Anand, a professor at Ohio State University, has grown in a dish a brain equal in maturity to that of a five-week-old fetus, his university reported.”

“It not only looks like the developing brain, its diverse cell types express nearly all genes like a brain,” Anand said.”

“Around the size of a pea, the brain in a lab dish includes multiple cell types, all major regions of the brain and a spinal cord, but lacks a vascular system, the university said.” 

“It was grown from human skin cells and is claimed to be the most complete brain of its type grown yet.”

AND!!!!!

With the new 3D printing technology I might be able to make me new brain, each morning, right at home.

It’s SWEEPS “weak”

Haven’t blogged in a while. The last few weeks have been rough – the fibro-fatigue-fiends frolicking fearlessly.  I’m looking for my mop.

mad, sad, fatigue, fear

sweeping away sanity

the broom of my brain

92db0134526be573f75d3cf4e9645951

dust storm of feelings

tiny particles of dirt

blowing through my mind

6827_view

wring out the debris 

clean clear water, bucket brain

gratitude mop up

 

My Motto: Don’t call me. I won’t call you.

I never answer my phone.  I call people back when I have energy or e-mail because two-way phone conversations are physically tiring.  Crazy! . . . sounds crazy, even to me.  So I assume it sounds crazy to you.  

Not wanting to be labeled as “nuts” I usually explain  that after 30 years as a psychotherapist, answering my phone knowing that someone is probably calling in crisis, I’ve become phone-phobic.  

You understand phobia’s and their hallmark of being irrational.  You don’t understand neuroimmune-central nervous system-out-of-wack.  Can’t fault you.  I don’t understand it.  Medical science doesn’t understand it.   

Normal stimuli overload my brain circuits and the brains of others who live with Fibromyalgia, Chronic Fatigue, Lyme disease, Multiple Chemical Sensitivity, brain trauma etc.  There are a lot of theories but no one really knows why or what to do about it. 

Acrylic on Canvas, by moi

Acrylic on Canvas, by moi

Even though I’m a social person by nature all socializing tires me. One or two “events” a week is my limit.  Social Events?  You are undoubtedly picturing me out-on-the-town, wearing a Dior gown and sipping wine at the opera ( . . .  those who know me are picturing me wearing a t-shirt, Levi’s, Crocs and sipping coffee at Starbucks).

Activities that once were pleasurable now create fatigue:

  • Going to the movies or lunch with a friend (afterwards I nap for 3 hours)
  • Participating in any group activity (afterwards I go to bed early)
  • Walking Freddie in the park.  (I go the opposite direction when I see others walking their dogs.  Walking is taxing enough without interacting with dogs’ humans.)
  • Shopping in stores crowded with merchandise.  (My brain goes on visual overload)
  • Talking on the phone to someone I love.  (Yup, two-way conversations take focus and thus energy.) 

Since retiring I’ve done phone sessions with clients.  The pleasure of hearing their voices, catching up on their lives and the honor of hopefully helping them get back on track far outweigh any fatigue that comes later.  I’ve long ago figured out that some things are well worth the consequences of a nap or a few days of inactivity. 

Please continue to reach out. I will be honest with you about my options and energy.  I don’t want to live as a social recluse.  So E-mail me when you want to catch up, share, or get together because I won’t answer the phone . . .  

Hammy Hamster sez: "Nuts?, Did I hear NUTS!)

Hammy Hamster sez:
“Nuts?, Did I hear NUTS!)

This article prompted me to write this post: Cort Johnson, Social Exhaustion The comments are perhaps even more telling than the article itself.

Going Viral

Scratch one more cure . . .  for now.
I started an anti-viral medication that has been successful in treating some people with Chronic Fatigue.  There is a long-held theory that virus are responsible for fibromyalgia/CFS and since I have tested positive for a viral-reactivation it seemed worth a prescription.
After taking the meds for over a month and coping with a bit of  24-hour nausea and headaches, last night I was wakened by really severe stomach pain which radiated to my back .  The cure was worse than the malady. 
Before the pain became full-blown I was playing around with some oil paint and roughed-in this face.  Now looking at my preliminary sketch it’s a window into how I’ve been feeling.  I think I’ll not “finish” the painting and leave it be  . . .  for now.

Oil

Oil

I stopped the medication this morning.  Like my painting, I’m not going to try to “finish off” the virus either  . . .   for now.

Fibromyalgia DX: Hysterical Middle Aged Woman’s Syndrome

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 me and 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 or hysterical.  It is still a 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 now 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!