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

“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.

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.

Sneak a Peek into My Journal – Looking for a spark

It’s been a rough several months.  I suspect that in order to flee all the snow in the Eastern United States my “Fibro-Fiend” needed a bit of sunshine so dropped in for a visit.  It’s been sunny and warm here and she just won’t leave.  

She’s a demanding house-guest and almost all my energy is spent focusing on her needs.   She doesn’t have a very good sense of humor either and I have to find ways to amuse myself.  I’ve not had the energy to participate in Year of the Spark so I revisited some old, EASY Carla Sonheim exercises looking for some spark.

Click here – Irritated Birds – to see how I made the birdies.

Put a beak on it!

Put a beak on it!

Blob Critters  (they don’t have names yet)

  • Made a blob of color using water-color
  • Found critters in the blobs
  • Drew a bit

Blob critters

Blob critters

That’s all folks.  Gotta go feed Fibro-Fiend. 

 

Keep it Clean Maureen!

 

 

Addison’s disease, however, is NOT funny:

Addison’s disease (also chronic adrenal insufficiencyhypocortisolism, and hypoadrenalism) is a rare, chronic endocrine disorder in which the adrenal glands do not produce sufficient steroid hormones (glucocorticoidsand often mineralocorticoids). It is characterised by a number of relatively nonspecific symptoms, such as abdominal pain and weakness, but under certain circumstances these may progress to Addisonian crisis, a severe illness in which there may be very low blood pressure and coma

 (Wikipedia)

Alone or Lonely: Which is Worse?

  • Collage, Mitten-hands stop me from reaching out. Noodle-brain -in my mind, not my heart

    First, I’ve been feeling a bit lonely lately.  Lonely in the sense I’ve not had time, taken time, to be in contact with my good friends, locked in my home office with paperwork.

    Second, I saw an interview on one of the morning shows about how some women were choosing not to marry at all or wait until their late 30’s, 40’s or 50’s — how their lives “alone” were not lonely.

    Third, I was talking to a friend about how difficult, how lonely it must be for someone to lose a spouse through death.
    She looked at me with a slight questioning surprise in her eyes when I said that it can often be more painful to be alone in a relationship than lonely without one.

    The question of which being more painful, alone or lonely, is an interesting one.
    In my practice, I see the anguish of couples who are without connection, without love, without companionship while IN a relationship.  I’m absolutely not diminishing the anguish, the pain of losing a beloved spouse or partner.

    I’m simply saying that loss through death can be mourned and the finality, while always difficult, can be acknowledged and accepted.  
    When the relationship is dead and both partners are still alive the grieving never stops, the pain often keeps increasing rather than diminishing.

    For those of us with chronic medical conditions there is often a pervasive sense of being alone.  A thought that no one can really understand, no one can help even if they want to, that we have been abandoned by God or worse yet, being punished . . .

    I think that loneliness has to do more with our state of mind than state of our body or state of our relationships: How we view the world;  How we define our expectations, fantasies, shoulds, coulds and woulds.
    Upon more reflection the most devastating might be  
    being alone AND lonely,
     also a state of mind.
    Powerful thing that noodle-brain.

The Care & Handling of Wives with a Chronic Illness

After writing about the crab cooker yesterday my interest in crabs peaked.  What I found, the care of pet hermit crabs, was not only fascinating but startlingly parallel to my experience having a chronic medical condition.  

 Read on for part of a FAQ on pet crab-care to see the startling similarities. (As usual I’ve taken some editorial liberties but the original is largely intact)

My Crab’s Legs are Falling Off One by One!!
Many people who bring home crabs fresh from the pet store experience this in the first month of owning them — the crabs seem to just “fall apart” one leg at a time. Let me state for clarity, that this is not molting! What your crab is doing is responding to all the stress of being taken from his tropical home, taken to a wholesaler’s and then shipped to a pet store. That is a lot of stress on any animal (even people!) and for a small animal like a hermit crab, it can have devastating consequences.

Near-sighted Brunett Crab

Is Fibromyalgia (legs falling off) Contagious?  No, it is not usually contagious, unless all your wives (crabs) came from the same family and were subjected to the same hereditary conditions. For this reason you should always select your wives carefully, no matter where you buy them. Avoid wives that have a musty smell (indication of overheating or hot flashes) and wives that will not come out of their shells when held or misted. The ONLY exceptions to this rule are (1) if the wife has a healthy, strong pinch when you put something in her large claw, or (2) if you feel movement inside the shell as you hold her. Don’t buy wives from families where they don’t have adequate food or water, or if there are flies inside the home or on the wives. (euuuw) For the safety of all your hermit wives, newly-purchased wives should be quarantined at least two weeks.

Overdeveloped Left-clawed Blond Crab

But What if I’ve had the Wife for Longer Than a Month?  If you’ve had the wife for at least a month and she begins to drop legs and claws, you need to closely examine your wife-keeping practices. Refer to the basic care page to brush up on your skills. Pay particular attention to the Critical Care Tips at the bottom of the page.

Is There Anything I can do to Help my Poor Wife?  The only thing you can do for your hermit wife is maintain an optimum environment and hope the stress wasn’t lethal. I have had wives lose their cool and not die. I have had wives lose their mind and not die, so the loss of their faculties does not mean your wife is “doomed.” However, wives that lose more than one leg in a few hours are usually beyond help and you should isolate them from the others and attempt to keep them as comfortable as possible until their death.

What Can I do to Prevent This From Happening Again?
Closely examine your crabitat. Check for the following known fibro-crab stressors: (1) low humidity; (2) tank too hot or too cold; (3) recent temperature fluctuations; (4) chlorine in the drinking water; (5) heat lamps, heat rocks or being kept in the sun too long with no place to hide; (6) chemicals in the environment, such as metal water dishes, cleaning solvents around the crabitat, (7) shell fights; (8) bathing or misting the crabs too much (more than two times a week); and (9) molting problems. You can’t do much about the molting problems, but almost all the other stressors can be alleviated in some way. Please try to keep your crab’s home as stress-free as possible.  

I plan to give a copy to my husband so he will know how to handle me.

Hopefully he may begin to understand why I’m often crabby.

Well endowed Red-head Crab

http://www.hermit-crabs.com/FAQ.html

Living with God, Aliens and Pain

I was asked to give the keynote address for the 2009 Fibromyalgia Awareness Day at Cal State Fullerton.  I’ve given it many times since.  Here’s an abbreviated version:

I became symptomatic in 1996 when Fibromyalgia was considered a Hysterical Middle Aged Woman’s SYNDROME.  By the time I was diagnosed I met that criteria.  Doctor after doctor with a wink and a knowing pat on my shoulder (at least that was what I perceived) let me know nothing was PHYSICALLY wrong with me.
I decided I was inhabited by Aliens who were using me as a Southern California time-share.  It gave me comfort to find the cause.
Years passed, the Aliens stayed and the pain turned into depression, into exhaustion, into despair.  My body betrayed me, my mind fogged, the medical community  abandoned me,  family & friends were powerless. 
I was both sustained and drained by my psychotherapy practice.
Raised as a non-practicing Jew, whose father and mother were professed agnostics. I now had no faith – in my body, mind or a God. I had nothing to hold onto for comfort much less hope.
I didn’t matter.  Now THAT’S a depressing thought which I suspected was part of the Alien’s plot to render me completely helpless & hopeless in order to take over my time-share real estate.
I didn’t matter.  There was no purpose to my life.  I started making pictures: Ugly pictures, scribbling pictures, angry pictures.  I would paint and paste, scribble and scrawl without any conscious thought. 
Weeks later, months later, in some cases years later I would put words and meanings to my unconscious expression.  That body of work  turned out to be a visual document of my journey with the aliens.
I realized I had been mourning.  Grieving my loss of identity, a loss of purpose. I mourned for that energetic person: The one who worked a 60 hour week and went to school for two Master’s degrees; who jogged 10 miles in 100 degree heat; who saw 8 clients in a row and remembered the details of their lives a year later…

She was dead. I was angry. Now I had to check my appointment book to remind me of my clients’ names. I could work only for 3 hours before I had to take a nap.  Walking around the grocery store was exhausting.  I didn’t want to talk to anyone.  Holding the phone to my ear hurt my arms. Walking burned my feet. I didn’t make commitments other than work because I never knew how I would feel.

Life as I knew it was gone.  What was I?  Who was I?  Why was I here?  If there was a purpose to my having fibromyalgia it could only be an alien plot.

Without any pre-determined intent I drew a picture of my fibromyalgia:  Three eyes, three-tongues and spontaneously titled it “The Soul Slayer

Until that moment I had been focused on my body and mind, never my soul.   Since I’d been searching for the cause and a cure for my fibro for over a decade it was natural to now start searching for my soul.
Where does one look for a soul?  I went to synagogues and churches .  Found wonderful people but no soul – at least not mine.  I read about the world’s religions and searched SOUL on the internet.  I was sure that everyone else had a soul and it was only time that they discovered mine was missing.
Accidentally (maybe not?) I was introduced to a spiritual mentor, no more no less.  He was Baha’i, a faith I was familiar with but about which I knew only some basics.  He asked me to examine my life, my choices, my beliefs.  I had long known from a psychological perspective about my choices and beliefs but now that my mind and body had betrayed me it all rang hollow.
He told me to repeat out loud “Say, all are created by God” and “Thy Name is my healing.” each, 95 times every day. (95 is a sacred number to the Baha’is.)  There was nothing to lose.  Unlike everything else I had tried as a “cure” this Rx didn’t cost me a penny and had no side effects (or so I thought).   
I needed a time and place where my fogged brain would remember to repeat each of these sentences 95 times out loud.
So I started walking and repeating “Say, all are created by God” and “Thy name is my healing.” 95 times.  It took my mind off the pain in my legs & hips and burning feet as I walked.  I started talking to God.
beginnings of Faith – My Servant of God explained to me that ALL souls recognize each other in passing.  I smiled at everyone I passed wherever I went, secretly delighted their souls knew my soul, even if I didn’t.
Exercising, smiling, talking to God!  
I’m not sure I’ve mastered listening to God but suddenly at the ripe old age of 66 I discovered faith. 
Walking, talking and smiling may not be the cure for fibromyalgia but they are damn good medicine (God, forgive me for swearing  – it’s the only way I can underscore my point)  and faith that the Aliens can’t destroy me.  I’m much more than just a convenient timeshare.
My soul  knows.  I can live with that.

“Know thou that the soul of man is exalted above,  and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments.”

“Consider the light of the lamp. Though an external object may interfere with its radiance, the light itself continueth to shine with undiminished power. In like manner, every malady afflicting the body of man is an impediment that preventeth the soul from manifesting its inherent might and power. When it leaveth the body, however, it will evince such ascendancy, and reveal such influence as no force on earth can equal. Every pure, every refined and sanctified soul will be endowed with tremendous power, and shall rejoice with exceeding gladness.”

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!