Women and Fibromyalgia

“Every person who has mastered a profession is a skeptic concerning it” , George Bernard Shaw 

After a diagnosis of fibromyalgia is made usually the search begins for someone who is expert in working with people in pain. Who is it to be? While it may be someone from the traditional medical system who is a certified professional, such as a medical physician or a physiotherapist (physical therapist), it could just as likely be an acupuncturist or a person skilled in Jin Shin Jyutsu, Feldenkrais, Qi Gong, or Therapeutic Touch who are often regarded as ‘alternative professionals’. Do we go with one therapist or a combination? A team? Will one set of professionals work with another or is there competition among many? What do we do when there are opposing views among them? How do we avoid dependence upon one or several within the groups available? Most importantly, to use the quote in the book Explain Pain, how do we avoid the “sea of endless professionals”?

It seems the list is non-ending about those whose business it is to provide help to people who suffer from pain . Some are more costly than others, and there are many insurance companies or health plans that will pay for the services of some, but not for others. It can be a confusing roller coaster ride of trial and error, relying first on one practitioner then another. Ultimately it rests upon us to find the approach that will best help us to help ourselves. Of prime importance for many is the issue of cost . The road to strengthening our bodies to work with (not against) the pain (if indeed that is possible, and I hope it is, even after 40 years of chronic pain!) requires expenditures of time, commitment and money.

Massages, while beneficial at least in the short term, the range in prices is dependent upon geographical locale, experience and qualifications of the massage therapist. In Canada, the programs are of a two year duration, requiring strict regulations, difficult examinations and two years of study in a recognized school before a person becomes a Registered Massage Therapist (RMT) and/or a Certified Massage Therapist (CMR). In some countries it is not as strictly regulated nor do the practitioners have the same degree of professional qualifications. There are a variety of massage approaches and often a practitioner becomes expert in one or a combination of several types. 

I personally have had good experiences with massage therapists. My own regular massage therapist, Jackie (CMT), comes to my house every two weeks with her own massage table and knows my body well. I am fortunate that my insurance coverage pays at least a fraction of the cost. She knows when I am having a flare up and will describe my body as feeling like cooked oatmeal (!) when she is able to feel the muscle sensitivity. The ‘knots’ she feels are loosened and afterwards I am relaxed until the next build up. This practitioner is experienced and helpful but yet does not offer advice outside of her domain. She is happy when I am able to partake of exercise programs that strengthen my body. She is particularly fond of the ‘feel’ of my muscles when I have been able to do pool walking for an extended period of time. While massage is beneficial to me, it would be most helpful for me to learn something from this experience and learn other strategies on my own that will help her in her work. I cannot just be a lump on the table expecting her to ‘cure’ me of my pain. It is important that I take control of my pain.

Another therapist, Peter is an expert in specific kinds of body challenges and his approach is less ‘soothing’ and more geared toward a localized area of pain or immobility. Both have contributed greatly to the easing of pain temporarily, but massage alone will not be long term without a program that helps me help myself.

Chiropractors have a long tradition in most countries and I have had good success with my own, Dena. Of all the helping body work professionals their practice cannot be undertaken without a doctorate degree. They also have more authority in terms of either taking or prescribing x-rays. My experience has been very positive working with Dena and Jackie as a team since they both respect one another’s expertise. However, again, without my attempts to make myself stronger their treatments will not be effective unless I learn certain strategies to enhance theirs.

Therein lies the big problem. Some days, weeks, months I am better than others and can undertake an exercise regime if it is gentle. Other times I have had too much pain and fatigue that I have not had the energy to keep doing much as my recuperative time is slow. I always try to keep as mobile as possible, but sometimes I am simply not able. This is one of the most frustrating issues of fibromyalgia; often one step forward and two backward. Getting back on the horse after falling off is always a challenge!

Physiotherapists/Physical Therapists

PTs are also not allowed to practice without a degree from their professional associations. More accepted by the traditional medical profession, their fees, or part of, are usually paid for by health care plans if a person is fortunate to have one.

My own experience of working with one began in Arizona in February 2008 after suffering from bursitis in my hip. Terri was a wonderful, experienced PT who encouraged all her clients to attend classes at least twice a week so that she could watch us doing the strengthening exercise regimes she had spent years in developing. Although I was not in Tucson for very long she was able to help me begin walking again after weeks of painful limping. My travel insurance covered the cost of her treatments; I was very fortunate in that regard.

Back in Nova Scotia, Nick brought me to another realm of understanding about the nature of pain in general (see the blog on weight bearing ‘machines’). While Terri believed that fibromyalgia was due to hypermobility of joints, Nick’s thinking was more in line with mine, that is, fibromyalgia is the result of an overstimulated nervous system. This shows me once again how even within their own profession there are different understandings about the cause/nature of pain.

My health care plan covers a fraction of the costs for physiotherapy; once again I am lucky.  The costs of these kinds of therapies are often prohibitive long term, and unless there is a personal goal that a person hopes to achieve, the treatment could go on for a long time.

Osteopaths

The traditional practice  of this profession is one of osteopathic palpation originally designed by Dr. Andrew Still in the late 1800s. However there have been several deviations and various kinds of interpretations of osteopaths in different countries. In Canada for instance, osteopaths are not practicing physicians but rather focus on manipulation, whereas in other places, particularly in the US, they are qualified to practice as medical physicians and are known as DO.

Peter, my massage therapist, is now completing five years of study to garner a diploma in osteopathy (DOMP) which is in line with osteopathic palpation. These movements/ palpations are gentle, slow processes which help rehabilitate the body. The practice is soothing to the nervous system and I have benefitted from this art. But, it is not something I would or have undertaken long term.

Acupuncture

This ancient practice is one which many fibromyalgia sufferers have tried in an attempt for pain relief. Sometimes the people who do acupuncture have had several weeks or even years of study whereas others, particularly those from Asian countries have been so thoroughly trained in the art that they can train others. While I have had many acupuncture treatments they have not offered me much relief long term and often hardly any long term. However, I know of others who are very committed to the practice and, like the other treatments have spent a great deal of money seeking temporary relief from pain.

Jin Shin Jyutsu

For the least expensive of the above mentioned treatments, this is the way to go. Years ago I met Julie who was an experienced Jin Shin practitioner. Somewhat akin to Therapeutic Touch (but actually touching the body, which does not happend in TT) this approach is based upon the work of Mary Burmeister in the US. Burmeister, who died in 2008, was a teacher of this ancient Japanese art. It involves using hands to experience the connection between the body-mind. While it is too lengthy here to explain how this is done, there are short how-to books which Mary developed explaining how to release physical symptoms by use of hands on certain body points. It is, for me, a form of massage that is very localized and with pressure to specific areas. It has been a simple and effective technique which has been calming to my nervous system. While ‘energy’ is  discussed by Burmeister, I am not generally open to that sort of discourse and prefer to think of the nervous system as being calmed.

Although Julie has moved from my area she held many classes to show others how to do Jin Shin and while she lived nearby I was one of her appreciative clients. I found this therapy to be among the most soothing of most practices I explored. It can be done on oneself or by another. Mary called this the art of ‘Physio-Philosophy”.

Feldenkrais

In the past I have taken Feldenkrais classes from a wonderful, experienced teacher, Kelly. These were very relaxing and gentle approaches to better mobility and movement. I heartily endorse this method of learning how to release constrictions to the muscular-skeletal system, particularly as a person ages and is dealing with not only fibromyalgia but the aches and pains associated with the aging process!

As can be seen there are many professionals/therapists of different orientations who can help one to help oneself. I have mentioned the people with whom I have worked in the past who have been helpful in showing me the path to greater understanding of my own body’s ability to pain management. Nobody has a single answer to the questions that plague someone with chronic pain. After all these years I still don’t know many things about the complexity of my own body. What has taken me a long time to understand is that the ultimate aim is to keep moving (mobility!) and learning about the body-mind connection. Many believe that practices such as Pilates, Qi Gong and Tai Chi are among the best ways to maintain mobility. I think that we have to gear the practice to our own taste and financial resources.

I have found the words of Butler and Moseley in Explain Pain to be most helpful. On page 102, they write about  the strategies of living with pain:

1) Learning about the problem; 2) Exploring ways to move; 3) Exploring and nudging the edges of pain; 4) Staying positive; 5) Making plans. Their view is that a “clinical nightmare” could develop from too many practitioners with conflicting explanations. Regarding pain they write “In the end, it is you who has the most power to manage and rid yourself of it”, (p.94).

It has taken me almost a lifetime to acknowledge that it isn’t others who can provide a ‘cure’ to help me deal with this demon on a daily basis. I cannot advise anyone else either, as that is not my role. Though others can provide support and knowledge that can help me with choices, it is my responsibility to enhance my own life. I still take one step forward and two backward and the backward steps are often very discouraging.

This entry was posted on Tuesday, April 29th, 2008 at 8:57 am and is filed under acupuncture, chiropractors, explain pain book, Fibromyalgia, Jin Shin, massage, Osteopaths, pain management, physiotherapists, pilates, Qi Gong, tai-chi. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.