Fybromyalgia and fear reactivity

[dianneg]

What is advisable when teaching someone with fibromyalgia? Can fear-reactivity be addressed in the same manner as it would be with someone who isn't inflicted with this disease? I mean, as far as I understand from what I have read here and what I have heard from my chiro and from my mother, who has had this condition for about 10 years, fybromyalgia is an autoimmune disease effecting the fascia of a muscle, depleating a person's ability to move comfortably, as well as eventually leading to a state of depression because of this spiraling effect from discomfort to pain to distress over the pain etc and so. So, in turn it appears to be emotional/psychological and physical but what comes first? Could the emotions have led to this state or has the state led to these emotions? And either way how does one break what appears to be a greater armor of fear reactivity if the person is fearful of even doing the most modified/gentle exercise possible?

I realize there may not be one simple answer but I wonder how to even begin with someone as entrenched in fear as some women I have met are with this disease.

dianneg

[Scott Sonnon]

Dianne,

There was a link from a fibromyalgia specialist on how to implement RMAX here: http://www.fibromyalgia-chronic-fatigue-fix.com/exercise.html

[dianneg]

Thanks Coach Sonnon. I clicked on your link and I recieved a message that said no such URL...
dianne

[Scott Sonnon]

That's very strange. Let me check if I saved the info.

[Scott Sonnon]

In the mean time, here is a useful thread on the topic: http://www.circularstrengthmag.com/forum/viewtopic.php?t=1432

[dianneg]

I messed around with the address you gave me and I cut off the 'exercises.com' part and found the site. Perhaps to get into the exercise section you have to buy the online book? Thanks again.
dianne

[Scott Sonnon]

Dianne,
I forget who the owner of that site is, but I remember very well that it was a free site making suggestions to various aspects of CST. If they're now requiring a fee, then I cannot in good conscience refer you to them, as I don't know what's behind that closed door.

[Jarlo Ilano]

Dianne,

That link to the past thread about fibromyalgia Coach gave you was really good.

I can add a few things based on my experience (which is fairly limited, there are therapists with much more out there).

Fibromyalgia is definitely a multifactorial problem requiring multidisciplinary treatment. Doctors, bodyworkers, physical therapists, counselors, nutritionists, should all play a role. As they should with those suffering such chronic pain issues.

Fibromyalgia unfortunately can become a garbage can diagnosis. With many people lumped in to the disease, because of the commonality of intractable, chronic pain, that has no specific cause, or readily identifiable etiology. If it doesn't show up on x-rays or MRI scans, most physicians will dismiss it as psychosomatic, and are going to try to pawn you off on somebody else. The infamous "black hole of physical therapy". :roll:

But in truth, a good amount of great research and practical treatment of fibromyalgia is out there. And people have found a great deal of help. The best of which, as stated above, combines very many approaches.

RMAX philosophy can be a great part of this, because of its emphasis on personal, progressive, painfree motion. Not on specific protocols of repetitions that need to be met no matter what, but in finding the best way for you to do more over time, than what you have done before. And also in exploring all of our motion, rather than just some parts of it.

The research, and anecdotal conjecture, that I have read emphasizes aerobic activities (daily and progressive). Swimming and aqua therapy are said to work wonders. Allowing much more movement with less pain.

Looking at it from a somatics point of view, the continuous "aerobic" exercise, may be useful because of the rhythmic, repetitive nature. This allows many people to be more aware of their bodies and its sensations. Thus circumventing alot of the "pain" pathways that are looping in the chronic pain patient.

Also, water therapy, has been widely praised by somatic people, because of the unique sensations it imparts to us. Personally, I think salt water, may be even more helpful because its density offers a better tactility. (This is my opinion, though native Hawaiians swear by the healing properties of swimming in the ocean). A nice warm, salt water pool in which to perform movement sounds great.

My old boss told me about this great physical therapist (in Seattle) that specialized in Fibromyalgia patients. She had great success. I unfortunately did not get a chance to meet or talk with her...

Hope that rambling helps a little bit...

[dianneg]

Coach Sonnon-
That's understandable. The CST forum link is definately helpful.


Jarlo-
Slow and progressive makes sence in anything that somebody with fibromyalgia does. I have seen from both my mother and a friend, who also has this autoimmune deficiency, to try something new and if it moves too quickly or aggressively, they get discouraged and eventually quit. This must add to the depression involved. Not feeling like you can do anything without hurting?

I will pass on the recommendation from here. Thank you for your input.
peace,
dianneg

[Connie Brown]

Dianne, I have a friend with FM that swears by WW in a pool.

[Glenn Sunshine]

My brother is a chiropractor specializing in an approach called TBM. His research suggests that fibromyalgia is caused by viruses that lodge in the muscles. He has been very successful in treating FM patients using some of the techniques from TBM. If you're interested in more info on what he's doing, PM me and I'll get it for you or put you in touch with him.

Yours,
Glenn

[Randall]

Hello Dianne,

Here's what I know about people with fybromyalgia. A very good bodyworker I know had a lot of success when he got to the root cause of the dis-ease. He does a combination of Myofascial work, craniosacral and just plain old intuitive and caring touch. After helping many of his clients, he found that often, there was some form of sexual abuse in the clients past. It could have been from different kinds of sexual issues, but always seemed to get better, when they were addressed somatically. This may have something to do with why people affected with fibromyalgia don't like to do things that hurts. I agree with Peter Levine's opinion (author of Waking the Tiger) where he says that some people have huge leaps in their healing process where they have big emmotional releases, but most of the time, and normally, people get better slowly. What might be the most important thing, is that there is always a sense of hope, something that isn't always easy to have. Believe she will get better, and if she believes it too, it will be a huge tool for her to use in her healing. I believe, anyone can heal. What to heal means though, is an other story.
I would love to know what Glenn's chiro friend does, the TBM?

Randall


Glenn,

What is TBM?

[Glenn Sunshine]

TBM = Total Body Modification. It's based on the metaphor that our health is controlled by a number of biocomputers, and that most if not all health issues can be addressed by identifying the glitch in the program and resetting the computer. The glitch could be caused by emotional trauma, by the way, but the TBM practitioner uses a system of biofeedback via muscle testing to determine which computer is off and what to do about it. That's my way of describing it, a TBM practitioner would undoubtedly nuance that quite a bit more.

Yours,
Glenn

[Randall]

Cool! Thanks. :)

Randall

[dianneg]

Lots of great information here. I appreciate all your thoughts and professional input.

Randall wrote,

there is always a sense of hope, something that isn't always easy to have. Believe she will get better, and if she believes it too, it will be a huge tool for her to use in her healing.

this really touches upon something I truly believe in and pray that anyone with such a confusing dis-ease can keep in mind.

in peace,
dianneg

[dianneg]

Lots of great information here. I appreciate all your thoughts and professional input.

Randall wrote,

there is always a sense of hope, something that isn't always easy to have. Believe she will get better, and if she believes it too, it will be a huge tool for her to use in her healing.

this really touches upon something I truly believe in and pray that anyone with such a confusing dis-ease can keep in mind.

in peace,
dianneg

[Vbrown]

Wow, some really insightful information.

From my reading and limited treatment of patients, it truly seems to be multifactorial. Once a FM sufferer looks for treatment, it's safe to assume that they've actually HAD it for close to 10 years. It's only now hit a threshold that gets them to seek help.

By this point, it seems pointless (IMO) to wonder about the original cause. So much has crystallized at this point that all the factors are now equally entrenched. I don't even downplay the "psychosomatic" portion with my patients. I just try to reframe it for them. They have been in deep pain and have developed a semi-advisarial relationship with their bodies. Of course it's going to effect their mind/heart/spirit. Which continues the Downward Perfomance Spiral. I just remind them that it's not ALL in their head, it's only a facet.

The few folks that I've been able to help have benifited best from a multi-disciplinary approach. TCM, PT, Naturopathy, counseling and dietary changes have all come together for them. I haven't seen 100% recovery as of yet, but I have seen huge increases in their joy and quality of life. Which makes everyone involved optimistic.

FWIW,

Vince

[JasonE]

My sister has fibromyalgia too, and she has great difficulty with maintaining her everyday life. She's an OT and knows many of the things she needs to do, but still has great trouble finding relief. She had some success with a program called "Ai Chi", which was modified Tai Chi done in a pool.

I've been trying to interest her in CST, but she's skeptical of anything that hasn't been done to death by standard western medicine. :roll: I appreciate this discussion, and will be sharing some of this information with her. :wink:

[Randall]

I wrote:

A very good bodyworker I know had a lot of success when he got to the root cause of the dis-ease.

I can't believe I said that! :P Shame on me.

VBrown wrote:

By this point, it seems pointless (IMO) to wonder about the original cause. So much has crystallized at this point that all the factors are now equally entrenched

That is so very true. I remeber thinking several times, that I had found *THE* best type of thereapy. Be it Myofascial, Qigong, CranioSacral or what ever. I realized through my own body awareness and that of people I worked with, that sometimes you need this, and sometimes you need that. The more you allow yourself to feel what it is that you need, the more you will find the appropriate type of activity or therapy that you need in that moment. That's the problem with our one pill wonder society. It's ok to try and do many things. It's ok for it to take a while to.

Also, I very much agree with it not being important what THE cause is, but dealing with the different layers of the problem.

Dianne wrote:


Could the emotions have led to this state or has the state led to these emotions?

I think the answer to that is: Yes... It is now both.

I do understand the resistance, for what ever reason. The people I have worked with who have this kind of situation, have a hard time with doing all these different types of "therapy". They often continue to look for that one thing that caused it. I've seen progress although sometimes slow, by just perseviering with them, and always being open to trying different things.

Randall

[dianneg]

Yes, Randall, I agree with what you said. It can take time, it can take many forms of healing modalities but ultimately it's the perception of the situation that makes the difference. Not to discredit the discomfort and pain involved in this syndrome versus any another situation however the mind plays a huge part doesn't it? What is perceived? How much do we awfulize something and how often can we be patient with ourselves and our progress. I say 'we' because on some level we all deal with our own form of 'fibro' (metaphorically or not). For some it is more prevalant and life altering than others but no matter it takes perserverance, as you said, to plug along and realize that nothing is that simple when it comes to the human body and mind, for all of us.

So, I guess where this rant is going... is to say that we can give ourselves permission to take the time and space and self reflection required in order to come to find out what steps to take towards ease instead of dis-ease.

in peace,
dianneg

Sounds good to me :)

Randall

[KEVIN TEAGLE]

Dianne,
About half of my enthusiast class that I lead have dealt with FM. This is just to say that there is light at the end of the tunnel. They have all progressed, some faster than others but they all progress, some just do Warrior Wellness, some use my services, some use massage therapy, physicians that specialize, . . .Slow and easy. I watch them and often recommend only 5 or 10 minutes each week as they slowly teach their own body new things. keep encouraging them. It seems that there is a great deal of frustration and depression with this challenge. Keep lifting them up. You may be the last one to care.
Often physicians have told them that this is it, and that it doesn't get any better. A kind supportive word for the heart is a powerful thing in this healing proffession.

Kevin Teagle DC

[KEVIN TEAGLE]

Dianne,
About half of my enthusiast class that I lead have dealt with FM. This is just to say that there is light at the end of the tunnel. They have all progressed, some faster than others but they all progress, some just do Warrior Wellness, some use my services, some use massage therapy, physicians that specialize, . . .Slow and easy. I watch them and often recommend only 5 or 10 minutes each week as they slowly teach their own body new things. keep encouraging them. It seems that there is a great deal of frustration and depression with this challenge. Keep lifting them up. You may be the last one to care.
Often physicians have told them that this is it, and that it doesn't get any better. A kind supportive word for the heart is a powerful thing in this healing proffession.

Kevin Teagle DC

[dianneg]

Kevin-
Thanks for this reminder to remain soft and loving.
dianneg