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.

 

4 thoughts on “Navigating CFS and Fibromyalgia

  1. I’ve been through a similar experience, but not as intense as yours. In the ’90’s I reached a point where I couldn’t sleep, had no energy, and diarrhea often. This has gone on for about 3 years to the point I could hardly work. No doctors could come up with a diagnosis. Fortunately, during this time I met a couple of women with Chronic Fatigue Syndrome, one of whom had diagnosed her as having CFS and she felt I surely had it. He was an integrative MD with many other certifications including nutrition. He diagnosed the CFS and treated me mainly with natural supplements. As it turned out, my small intestine was damaged as a result of eating gluten and dairy which I could not digest due to a lack of certain enzyme production. He helped me create a diet that works beautifully for me that included animal protein, vegetables, and low carbs. I’m also pre-diabetic. I really sympathize with you and think you are wise to look for causes and not just cover up the symptoms with drugs. I wish you the best with your healing journey!

    • Yes, I remember reading about it in your book and realizing we’d both been down that path. I didn’t realize pre-diabetic was also in there for you. Thanks Georganne!

  2. Wonderful story. Isn’t it amazing how trying to help ourselves can send us down a path of discovery that goes far beyond the expected? And often times it’s facilitated by illnesses that modern medicine isn’t well equipped to handle or chronic situations that we finally address in very different ways.

Please add your thoughts; love a good discussion!

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.