Navigating CFS and Fibromyalgia

Dhanwantari, Hindu god of medicine

As I inch ever closer to “completing” the journey to health, I’ve been thinking a lot about CFS, fibromyalgia, the differing worlds of allopathic and alternative medicine, and how my healing journey has operated on many levels. [btw I’m still working on the People Power series so stay tuned for more to come]

Neither ailment was ever officially diagnosed by a “western” doctor.  When I first started complaining of fatigue and pain, western medicine held steadfast in denying chronic fatigue or fibromyalgia existed.  They’d tell you it was in your mind and maybe you should see a shrink.  I knew something was wrong so I started seeking alternative therapies, beginning with acupuncture.

Many alternative practitioners felt I had fibromyalgia — some talked about the pattern of calcified fibers ALL over all my muscles; for them it was about how the muscles feel — but when allopathic medicine finally acknowledged its existence their list of symptoms didn’t match mine.  And as usual their treatment is a pharmaceutical sop to symptoms that in no way cures it. So anyone’s guess whether my muscle problems are or aren’t fibromyalgia.  I call it that because the practitioners who helped me did.

In hindsight I see it as a blessing that western medicine had no place for my problems because (1) I think the alternative medicine path has been a total, eye-opening gift and (2) the emphasis on healing rather than masking symptoms is a big part of my returning strength and energy.

From the purely physical standpoint, I think it’s important to understand the path to healing for these ailments looks very different for different people.  Several practitioners along the way noted that CFS and fibromyalgia– particularly CFS — are often a result of a catastrophic collection of system issues/failures which means the underlying causes are multiple and differ among sufferers.  And fibromyalgia can be one of the pieces leading to CFS. The path to wellness for one may do nothing for someone whose underlying issue is different.

For instance some practitioners were convinced about one particular diet — often vegan or vegetarian — and thought everyone had to be on that diet.  Diet, too, is an area in which different people need different ones.

I go on a fast downhill slide on any strict vegetarian diet (although I eat a fair number of vegetarian meals), with symptoms that start with my digestive system ceasing to function and move on to lowered blood pressure, extreme fatigue and anemia. My life-long problem with anemia only disappears if I eat red meat once a week or so.  At the same time I know people who are robustly healthy on a vegan diet.

What works for you can be complicated.  I’ve been sorting through things for years trying to figure out what seems to keep me healthiest and my diet continues to be a process of tweaking.

For me a huge turning point came at the end of my first Body Patterning appointment, when the therapist asked if I knew that muscles were squeezing every single organ and gland.  All the many years of treatments till then had dealt separately with the muscle issues and the CFS.  Acupuncturist after acupuncturist treated me in constant rotation for issues with all the glands and some of the organs.  Treatments would help for a while and then fade in effectiveness.

Acupuncture treatments for muscle and pain issues are not the same as the treatments of meridians for gland and organ issues.  Unfortunately acupuncture diagnosis doesn’t seem to have a way to distinguish between weakness in a meridian caused by muscles squeezing the associated gland or organ from weakness caused by a problem in the organ or gland itself.

Once I understood the muscles were my primary problem I focused my attention on opening/releasing the muscles, a plan which included some trades for body work (by this time I’d run out of funds for endless alternative treatments…).  I worked along by practicing yoga and with tapes of Robert Masters’ Psychophysical Method and eventually I re-worked the Masters stuff into sets I found more effective and combined the work with yoga postures to support the opening created by his triggers of release.

Initially I walked my spiritual and physical journeys as separate paths.  Eventually I came to see how mental, emotional, physical and spiritual issues all enter into any journey of healing.  I began exploring issues, digging through childhood memories and releasing old beliefs.  In more recent years i also started exploring ancestral patterns and how patterns in muscles can be passed from one generation to another to another.

When I started there wasn’t even the beginning of a guide to how to negotiate all this and as far as I can tell the information people with these diagnoses get still varies.  Western medicine deems them incurable.  Alternative medicine thinks they can be resolved but often fail to understand the complexity and that you probably have to use more than one healing modality and combine it with emotional and spiritual work.

The bottom line is these ailments (and some other immune system disorders) are still to some degree mysterious even to alternative practitioners and allopathic medicine knows even less.  Your path to healing is going to be a quest you must undertake and only you will be able to discern the impact of various suggestions and modalities and practices.

Making it even harder, at the worst stages, even something that’s helping may not produce an impact you can feel.  As long as you aren’t getting worse, sometimes you have to try something for a while on faith.  You have to get to know your own body and its nuances.

And you have to be willing to stand up for what you know to be truth.  I have literally quit several practitioners the day they argued with or refused to accept what I told them I knew about my own body, especially some of the diet nazis.  At the same time I’ve had to be prepared to listen to analyses that were hard to take, especially those with good intuitive skills who homed in on issues I hadn’t noticed.

It can be a balancing act.  But hard as it is, the journey to health is ultimately up to you and you need to be your own best advocate and as thoroughly aware of your body and how it reacts as you can become.

For me this journey of getting in touch after years of being numb, of learning what works for me, etc. has been enlightening and empowering.

 

I like my aging face

For some months now I’ve felt like I’ve been in some sort of hibernation/incubation mix, drawn to studying up on a bunch of current events issues and unsure what’s next.  Finally in the last couple of weeks a couple of epiphanies have arrived.  The first will take several posts so I’m writing up the second one to open.

Lately a number of articles and insights about aging have cropped up, during a spell when I’ve often enjoyed my graying hair in the mirror as well as appreciating my aging face.  They’ve had me contemplating myself as an aging woman.

Time Stopped

Aging has been an odd process for me.  Like many with a long-term ailment like chronic fatigue and/or fibromyalgia, in many ways my life froze at the point in my mid-thirties when normal life stopped.  For many years I had trouble conceiving of myself as having moved anywhere past that age.

At the same time, the process of moving toward wellness included lots and lots of bodywork and a faithful yoga practice combined with some other movement practices.  Once the process of aging caught up with me enough that I could no longer hold an illusion of being 34 🙂 I had transformed my body from stiff and pained and barely mobile to strong and lithe and flexible.

So I find myself at 66 with a body that feels younger than it did in my thirties and a face that clearly says “66” in a life that felt like a couple of decades went missing.

“Not Fair”

Clearly somewhere along the way I drifted from feeling 34 to seeing the aging reality in the mirror.  Having, in most conventional senses, lost 25 or so years, my initial reaction was, “Not fair!”

Alternating amongst angry and mournful and denying, I grappled with “losing” most of the middle of life and finding myself old and still struggling to get past all the health and emotional issues   Not fair!

Again, because my body was coming back to life and my muscles were serving me better than ever, denial became an easy refuge.  As long as I didn’t look in the mirror, I felt so much better it was hard to reconcile the “old” thing with the state of my physical being.

I never landed on anger or grief or denial for long and through it all I could manage to look at what I accomplished during those years and have a little re-think.

I Earned This Face

I can’t remember how many years ago I quit dying my hair (I’d gone prematurely white around my face in my early 30’s and, like so many, once I started, I kept going too long), but an appreciation of the gray look has been growing ever since.

Lately, as mentioned, I’ve been seeing a lot of photos and posts about amazing “older” women.  Soaking in the tub one recent day and pondering some of these “signs” I flashed to the image of my long graying hair when it’s down and my face with its wrinkles and the deep circles under my eyes that tell me my kidneys are still being squeezed by muscles and I’m not getting enough sleep.

Suddenly I felt love.  I earned this face.  When I look at the photos above I see a progression that may not be as visible to those who haven’t lived it, but to me is clear.

The toddler me is still open and bright; it’s a photo taken before I shut down.

By the time of the graduation photo taken at 17, my face is frozen and the muscle issues have already pulled my eyes back farther into my head than they should be.

The next photo, at 45-ish, was taken after I’d been doing spiritual work for 10 or so years, after going through the Fisher-Hoffman process work and I can see a little more openness, but, not having started work on the facial muscles, my eyes have pulled even farther back.

In the final photo — from last week — I see a face much more open.  My eyes have moved farther forward.  Not all the way yet, as final recalcitrant core muscles continue to work out of the web behind my eyes, but they’ve moved and appear more open again. Still in progress, but a visible confirmation of accomplishment.

I worked hard to move from the girl with the frozen face to the aging woman with masks removed and brighter eyes  I’ve faced into dark depths and wandered down entangled pathways from which I could not see a way forward.

To the outer world my life moved nowhere except from one U.S. state to another to another, but in my essence, at the core of my being, I have traversed a thousand miles of wilderness, facing down the lions and tigers and bears.

At 66 I stand on the brink of being the healthiest I have perhaps ever been.  I’ve jettisoned neuroses and useless beliefs and large pieces of what I thought was my personality.  I’m still not positive where the next phase will find me but I know I’m finally going to be living life as me and on my terms.

I earned this face.

Sage advice: muscles

My knowledge of muscles is taken from many places.  From a section on anatomy and muscles in my yoga teacher training, to info on muscles liberally dispensed by yoga teachers and multiple body work therapists to reading on my own, I’ve been learning about muscles for 30+ years.

The key factor I would emphasize is that most of us are woefully ignorant about our muscles and the central role they play in our health, well-being and ability to get around.  Western medicine largely ignores muscles, so many problems go undetected because they don’t even look for damage when you’ve fallen or been in an accident.

It’s worth learning about your muscles and seeking assistance outside of allopathic medicine in order to maintain muscle health and to restore it to balance after injury.

Emotions and muscles

Since this is everyone’s least favorite aspect, let’s get it out of the way 🙂  At times of trauma and/or drama we tighten our muscles and often the emotions evoked by these events wind up locked in knots in the muscle.

When you start opening the muscles, whether through practicing yoga, getting body work or treatments like acupuncture, those emotions and the memories associated with them are going to surface.

I think it’s one of the biggest reasons body work may plateau; resistance to remembering and/or releasing leads the person unconsciously to tighten.  In yoga people prevent these openings by getting out of a pose as soon as the muscle starts to relax enough to let those memories and feelings rise up.

Getting clear of old issues almost always needs to include some work on muscles in order to open the flow and restore essence.

Strength and Flexibility

America has somehow come to the conclusion that healthy muscles need only to be strong.  It’s a persistent misconception even though multitudes of people who work only on strength have wound up suffering pain from the impact of having muscles that are rigid but incapable of flexing.

Natural movement through the world requires muscles to have both the strength to make certain movements and hold certain parts of the body upright and the flexibility to allow you to balance, and to adjust to the motions life throws at you and, even more important, to allow vital force energy to flow throughout your body.

The nadis, or energy channels, through which prana (chi, qi, vital energy…) moves go through the muscles.  Rigid muscles restrict that flow.  Western thinking and medicine understands very little about energy, but energy and its ability to circulate is crucial mentally, physically and spiritually to good health.

After 32 years of yoga I’m prejudiced, of course, but I think it’s one of the best ways to get your muscles into the perfect balance of strength and flexibility.  A good yoga practice works on balance on many levels and one of the important features of a good practice is performing poses for both strength and stretch.

The Pain Place and the Source of Pain May Not Be the Same

The first serious massage therapist for me used a combo of sports medicine and the trigger point therapy theories of Dr. Janet Travell, particularly as shaped by Bonnie Prudden in Myotherapy.  Because muscles are interconnected, a holding pattern in one area will spread –given enough time, tightness can spread throughout your body — and may create a tight spot that hurts somewhere else.

If you work only where the pain is, you will not get rid of the problem.  Practitioners who know how to follow patterns* can figure out where the source of the problem really is.  When that piece releases, others will be easy to open.

Margaret, that first practitioner, often worked on my neck, couldn’t get anything to budge, moved down to a giant ball of knotted muscles at the top of my achilles tendon, worked there and then went back to my neck, where the muscles would now respond.

In Body Patterning, practitioners learn to see patterns in muscles and will often release several other areas before working on the place where you’ve indicated pain.  They’re releasing pieces that are holding that one and the spot you may think is central will not let go while the other patterns hold.

Another aspect of this is that your brain will numb out much of the pain if you have tight, sore muscles all over (or in many places).  Then it will zero in on one or two specific parts where you will experience the pain.  They’re not necessarily the places of origin for your problem.  Sometimes the pain is just referring from the pattern that’s the real issue.

Find a good practitioner –making sure you check on the training and experience — and trust him or her to work wherever you most need it regardless of whether that turns out to be the place where you feel pain.

When I do Flowing Body work on myself or with students, I generally do triggers of release for at least three areas and work with consciousness not only of before and after, but what has been affected by what.  For instance, during a recent knee problem, I did the triggers for ankles, knees and hips and noticed the ankle release did the most for the sore knee and the hip release was also more effective than the knee releases.

Another I’ve noted frequently, as have many students, is that releasing the ankles will often release something in the neck and/or jaw.  Almost every release will cause people to lower their shoulders even if no work has been done on shoulders.  Pay attention as you practice yoga or other exercises as to which movements bring relief where.

Muscles and Bones

Many muscles are connected to bones which means muscles pulled out of alignment can pull bones out of alignment too.  In the early years of trying to work my way out of fibromyalgia –harking back to Margaret again — the massage therapist prescribed chiropractic appointments to help.

Once the muscles have pulled bones out of whack, it often takes work on the bones as well to get the muscles to release.  If you’re not keen on the invasiveness of traditional chiropractic work, try Network Chiropractic. which doesn’t use the bone crunching technique and instead is gentle touch.

Therapy and Self Care

Over time I learned that body workers can help a lot but if I don’t do anything to help in between appointments, progress is exceedingly slow.  There are a variety of things you can do to help

I’d already been doing yoga when I began getting massages, etc. so that has always been a natural piece for me.  But it was when I lived in the San Francisco Bay area that I became conscious of helping along more.

I’d moved out to Marin but still wanted to go to the same massage therapist and also liked going to Kabuki Hot Springs, a Japanese bath place with wonderful sauna, hot tub, steam, etc.  To save trips over the bridge I started booking the massages on one of the ladies’ days at Kabuki and going in to soak, sauna, etc. first.  The therapist quickly noted my muscles were much easier to work on from the deep heat work right before the appointment.

Then, years later when I started doing a trade for Body Patterning, I only had an appointment every other week and I knew I needed to do something to maintain from one visit to the next.  Yoga had always helped but not enough.  And the commute to Kabuki Hot Springs had become a couple thousand miles 🙂

I’d done Robert Masters’ Psycho-physical Method to tapes for years but found it unwieldy for regular practice.  I began doing some of this work in between appointments and gradually re-worked it into sets of my own which dropped some pieces and joined various disparate parts in his classes into sets that worked well together and then combined it with yoga

Practice in between helped and I began a practice of doing 30-60 minutes of this work shortly before massage appointments, with a long soak in a hot bath right before leaving.  Suddenly I was being told that I had released more since the last appointment.

Normally practitioners get a number of things to open and then a combination of repetitive motions performed in life and the pulling force of patterns still holding in your body take the progress backwards a few steps (say 4 steps forward, 2-3 steps back).  Then at the next appointment the practitioner spends 15-30 of the first minutes of your appointment getting you back to where you were at the end of the last appointment.

So doing your part through practices that maintain progress and making sure you’ve done all you could before an appointment, you can move much faster through the body work to healthy muscles.  Very little time needs to be spent on getting you back to where you were and most of the appointment is about progressing further.

Problems Arise Slowly

It’s amazing how little it can take to start a problem with muscles and then it may take years before you feel the pain.  Yup.  Years.

I know I try the patience of some of my students with my emphasis on form in doing yoga and they don’t really believe me when I tell them doing it wrong can cause injuries.  If they’re not being wheeled out on a gurney at the end of class, to them there was no injury.

But do a pose wrong — or watch TV daily with your head turned or tilted or sit with your hips uneven, etc. — and keep doing it wrong and one or more muscles can be pulled a little out of place and/or strained enough to create a small knot.

At the time and perhaps for some time to come you probably won’t feel any pain at all.  But you’ve started a pattern. And if it goes untreated, the muscle will lock into the slightly-off-position and the first couple of knots will pull more of the muscle into knots.  Once that muscle is far enough out of whack it will start pulling all the muscles around it and causing them to tighten.

You might have started off pulling a muscle in your right hip out of place and a few years later it’s expanded until you’re having pain in your left shoulder and since you haven’t even done yoga for two years, you have no idea that doing it wrong started your problem.

The same is also true of having an injury and failing to get help.  You may stay off an ankle for a few days or go on bed rest for a spell and feel okay enough when you move again. But there’s a very good chance the trauma and the automatic tightening of muscles around it has set a little pattern.  Left untreated the pattern will remain and keep reaching out to affect more muscles.

The best way to protect your muscles from injury is to stay aware in the now.  Learn to do any exercise properly — and if your teacher can’t carefully explain the details of how to do something correctly, FIND A DIFFERENT TEACHER!!!  Also take care about positions you engage in routinely — how you sit, how you hold your head.

If you do an assessment and realize you’ve been twisting your neck when you sleep or sitting with one hip higher than the other, etc., seek help on identifying any patterns that have arisen and releasing them before they’ve turned into 20 patterns.

Bottom line, your muscles are important and you are the best steward in maintaining health.  Do what you can to keep them healthy and any time you have an accident or injury or feel a strain from repetitive motion seek help from alternative practitioners who actually understand muscles.


*i.e. cranio-sacral or body patterning

Sideways into New Year

Close to home

I’ve never really understood the to-do about the New Year nor what it has to do with getting drunk the night before….  But I usually try to have a special snack of some sort on hand and do a year-end tarot reading or something.

This year, however, I came down with the flu over the weekend and wound up spending New Year’s Eve in three layers of clothes plus a hat, under two blankets with a hot water bottle AND a heating pad.  Mom gave up at 10 p.m. and I didn’t have much interest in any of the countdowns — too much noise, too much being introduced to rock/pop/hip-hop performers I’m sorry I ever heard…

So I put on a recording of the Great Performances celebration of Leonard Bernstein’s 100th birthday and dozed to strains of Tchaikovsky and West Side Story.  Opened my eyes and realized midnight had passed without even a notice.

I always feel like my birthday is more of an occasion on which to note what has just passed and contemplate what comes next.  As I’ve slowly recuperated and moved on into the first days of 2019, I haven’t felt much need for reflection, other than to think about the week and realize it was an odd way to start another year.

Thank goodness for the Chinese herbal ganmaoling.  I took it faithfully and the worst lasted only 1-1;2 days instead of the week others have been suffering.  And I’d add some kudos to the extra Aireborne I took and drinking my daily cups of turmeric-ginger tea.

The picture up top reflects one of my biggest desires for the coming year:  to manage a visit to my beloved former home in Marin County, CA.  Need to pull together funds to see my father too, in Florida.  Otherwise I’m content to let the year unfold without the need to impose intentions and goals on the flow.

Stumbling sideways into the new??  🙂  Or flowing peacefully??

And the healing goes on

View from Windy Corner — Leigh Gaitskill All Rights Reserved 2018

Two weeks ago at my latest appointment with Hanna, she worked on my head again and returned the pleasing news that she felt nothing fighting back any more; the muscles are just gracefully opening back out.

Ever since, the core pattern has been yanking and opening at all hours; all at once an exciting, wearying and crazy-making process.  Every time some more pieces open and I feel both the relief and the realization that there’s still more, I realize anew that the complexity was more intricate and the problem much bigger than I comprehended.  An amazing process to follow.

As I follow along I often wonder how many people realize the degree to which their muscles can intertwine, twist into knots along every strand, glue themselves to one another, etc.  Or how much worse it gets the longer a tight area goes un-addressed.

So I’m planning a “Sage Advice” post just about muscles.  Due to severe lack of sleep the time line for that is questionable 🙂

Sage Advice: Calcium

Apparently I’m going to be so sporadic on the Sage Advice posts that I feel the need to remind:  these posts are me sharing the wisdom I’ve gleaned during decades of alternative health practitioners from acupuncturists to many varieties of therapeutic massage therapists to cranio-sacral and body patterning therapists.

Some years back I had a few encounters with an alternative practitioner with very different training than many I’d seen, including studying for a while with an endocrinologist, and she had some completely different suggestions that proved to be very helpful.

One involved calcium.  She looked at my finger nails and the tiny to non-existent “moons” at the base of them.  She told me the moons on the fingers should be proportionally equivalent to the ones on the thumbs and that it indicates calcium deficiency if they’re not.  She felt some of my symptoms arose from this deficiency.

Since then I’ve done some research and found there are other deficiencies that may also be indicated but in my case upping calcium brought back larger white crescents so her diagnosis proved right for me.

She also told me to be careful about the type. Calcium Citrate, which is one of the most common forms, will only maintain the current level of calcium, it WILL NOT ADD any more.  So you want to look for a calcium tablet that has multiple varieties.  Or, her big suggestion was Pantothenic Acid (Vitamin B5), which when bought as a stand-alone (it’s often in B-complexes) is usually in the form of calcium pantothenate and absorbs very well, helping to raise calcium levels.  I happened to be seeing an MD turned acupuncturist at the time and when I told her about this calcium theory I was trying, she nodded and agreed about all of it, what the citrate form does, that Pantothenic Acid works well and using a supplement with several forms of calcium.

I take Pantothenic Acid AND a calcium complex with magnesium and zinc daily  and it has been part of regaining core energy — not to mention those moons on my fingernails 🙂

More from the healing front…

Every time I’ve thought it was done there’s been another chapter.  After the main final “block” in my head let go last month (see post) the unwinding started moving along much more quickly.  But about a week before my next scheduled (monthly) appointment with Hanna, I noted that it seemed kind of stuck again.

Sure enough last Friday when she worked on me, she found a pattern still in the remaining muscles.  Another tangent related to the whole witch’s curse story still held on, this one holding muscles related to opening my third eye, which has been a central piece of this story from the beginning.

She spent almost the whole appointment working on my head.  The pattern was very resistant and I was interested to hear her sense that it was entirely ancestor-placed, nothing that I did.  Eventually it did let go and the muscles are back to a fast pace of unwinding.

The cool thing since she released that block in October is my head feels more free and the unwinding doesn’t have the constant feeling of something tugging back hard and trying to slow down or halt progress.  But the few remaining pieces are a core of strands from several different muscles that have intertwined and glued themselves to one another so tightly it’s still tough for them to loosen up.

A couple of nights after the new release, the opening in my head set off a bunch of opening all down my left side and a huge pop released a tight little pattern that’s been in my left knee forever it seems.  Gone.

It’s still unbelievable to me that my muscles could have been so badly twisted, pulled out of place, wrongly-intertwined and glued together to take SO INCREDIBLY LONG, but it sure has. I like to remind everybody because even though you may not have it as bad, if you have tight patterns there are more interconnections and ever-deepening issues than you probably imagine.

The longer muscles remain twisted, the more they pull other muscles into the twist and misalignment.  You can wind up with pain in your right knee that’s actually caused by knotted muscles in, say, your left shoulder.  They’re all interconnected and the longer a pattern goes untended the greater the portion of your body it will pull out of balance.  In my case where there were multiple accidents and origin sites, various patterns wound up locked up with one another.  Take care of your body sooner rather than later!

In the meantime, these last weeks have been amazing as I feel the lightness and feel some slow shifts happening on the energetic level beginning to peep out in daily life. Quite a ride I’m on!