Whether you identify yourself as having 'fibromyalgia symptoms' or not, "chronic pain" or not, have YOU ever gone to someone who does 'bodywork', or "manual therapy",  to have them work on "tight muscles", or "painful muscles", and you've come away with a different outcome that you'd hoped? Unfortunately, it happens quite often, and so I wanted to provide information here about how to increase your odds of getting the results you want from such a service provider. Providers might find this information of benefit as well, as fibromylagia and the related conditions that tend to comingle with it tend to baffle 'everybody'.

Part of the problem is that the average medical provider has not been educated properly about what fibromyalgia is and what can be done for it. Lumigrate's YOU Model's focus is to empower and help teach the medical consumer to become eduated and pick a GRATE team of providers to surround themselves with, either live or via the Internet and 'at distance', such as I do with private clients as do many of the expert providing various information on Lumigrate. I encourage YOU, whether you're a medical consumer or a service provider, to help educate those involved in the consumer/provider relationship with you.  

It is critical to emphasize that many people are unaware they have, or 'are on the continuum and are developing' what is classified as "fibromyalgia" and the interrelated "chronic fatigue syndrome". It's not that a person will necessarily 'want to get that diagnosed', because it'll mess up your insurability and cause big repercussions on your life. This is one of the reasons doctors are very hesitant to provide such a diagnosis, although it's more often because they don't feel comfortable with the illness, generally, including how to diagnose it and what to do about it.

On more than one occasion I have been in the presence of physicians who are unaware who I am and what I do, and 'the F word' comes up and there is a general 'ugh' that goes through the group. Again, it tracks back to their lack of education, so don't get angry that I've just disclosed this, please, just realize there is room for improvement of education and HELP OTHERS with the process.  More than once, I've provided books to providers who I 'like' and think they are capable of learning to fill in what they haven't yet learned. It's YOUR health, so you might have to invest in solutions, and hopefully you'll feel the payback is worth your investment of time, energy, and money. 

Generally, consumers who have ventured out into alternative medicine providers have benefitted, not only because the treatment they were provided helped, but the provider 'understood' their condition, or at least one aspect of it, and they weren't condescending. The disrespect shown to chronic pain and chronic fatigue patients by providers who are perhaps frustrated about their lack of ability, or 'impotence' with it, leaves the patient/consumer feeling unimportant to say the least.  

Unfortunately, a LOT of providers in the allopathic medical world don't like dealing with patients with FM. This is, overall, because the allopathic treatment approach, if it is the only thing provided patients, is rarely successful in helping patients in the long term.  I have found this to occur in ALL facets of the conventional/allopathic world, which includes physical therapy.  So their "patients" might be in 'failure mode' as a result. The patients who aren't 'doing well' are well aware of their status and frustrations, and sometimes bring 'attitude' with them to their appointments.

Today, increasing numbers of patients/consumers are finding out about these things through the Internet connecting them to others in similar situations, which partially empowers them but they end up being 'difficult' patients. And this, in turn, reflects on the whole category of patients/consumers.  Recently, someone I was working with related to advise about what their symptoms and diagnosis meant and pointing them in the direction of further education said, after talking to doctor 'friends', "I didn't realize you're in the middle of a war with this, Mardy." 

What makes it more difficult for providers to understand is most do not have enough education about the effects of CHRONIC pain on people. (They even have prescribed, historically, medications for sleep and pain which are not intended to be taken long-term, which further contriburtes to the illness process.)  Chronic pain can literally affect a person's brain/mind, nervous system, as well as behaviors (see the transferred blog, below, and what Dr Z said about PT and chronic pain.).

Layer on top of that the long list of medications which are typically prescribed to people who have CFS/FMS/chronic pain of whatever origination -- and look at the side effect warnings for even the ones you see on television advertisements! The butterfly for sleep medication says something about 'agressive behaviors'.... Since Ambien was so inexpensive and popular, a LOT of people when Lumigrate launched were taking that particular drug and we used to have a hysterically good time on the Lumigrate:Fibromyalgia Facebook page talking about the crazy things people did while on that medication.

"Katie" as I jokingly refer to her, would have to have her family "bar the door" if she took Ambien, as she allegedly would get up about 3 am and want to go shopping at WalMart. Not KMart or Target or any other store. WalMart. I am pleased to say that I see in the 3 years since those discussions on Facebook, the consumers are aware that the long-term effects and side effects of medications are very problematic in many cases, and there has been an increasing awareness of the benefit of other services available to help people who have pain and tightness with their muscles resolve the underlying problem.  This is what is called 'functional medicine', and it is what Lumigrate 'is all about'. 

There is a lot of other information at Lumigrate about functional medicine GENERALLY, as well as the general problems that people experience with physicians and prescribing of medications without knowing how to look for the underlying cause of why the person has the pain, fatigue, cognitive changes and address those. (It typically has much to do with the hormone system, including thyroid and nutrition, and supplementation of both on top of correcting the diet are some of the major strategies physicians who ARE knowledgeable provide to patients/consumers.)

So please ALSO go look around for that information at Lumigrate today or another time soon when you're up for MORE learning about working on the body, mind, and spirit to get back towards being chronically well and not chronicially unwell/in pain.

Right now I am going to focus only on those providers we think of as 'bodyworkers' who work on our tissues and our bodies.  Manual therapy is another term. 

It is my experience, both working as an occupational therapist in an insurance-based clinic for a handfull of years as well as my handfull of years now working as the 'concierge' of Lumigrate.com and working with our guests/customers at Lumigrate.com as I do through the computer, telephone, Internet, etc., that many people who have chronic pain that is from tissues and not from orthopedic causes have been referred by their physician to physical therapy and typically the consumer/patient did not have a good outcome and 'dropped out'. Sometimes they call and cancel but other times they just 'no show'. This, again, casts a negative shadow over this type of patient in general and also doesn't help the provider or clinic staff know what the probem was. So the providers simply think 'oh, those patients with FM/CFS are unreliable and whacky' and don't really realize their skills about what to do to help are not what they could be in order to be helpful and not hurtful. 

When I was in the clinic, since my patients there would obviously have insurance and physicians or related professionals who referred them to therapy, they typically had been to PT in the past, and not one reported to me that they had a pleasant experience. We changed that for them, which basically occurred because I had worked in the clinic for enough time to know what each of the clinic's VERY GOOD PTs were 'best at' and what they were NOT interested in, not 'geared for', etc.

Therapists and doctors and massage therapists are people, and people are all different. So as a medical consumer OR PROVIDER using Lumigrate as a resource, you hopefully are going to benefit from having been presented with this information. I am actually going to refer here to a link at About.com; please notice that there is a link you can catch specifically about MASSAGE THERAPY if you follow this link out: 

chronicfatigue.about.com/od/alternativetreatments/a/manualtherapy.htm [1]

And I hope you come back to Lumigrate! Remember, you can put your efforts into solutions or you can put your efforts into finding problems.  When it comes to knowing what you have going on with your health and WHY that happened, it is important (and it would be ideal if it were possible to solve fibromyalgia without ever having had that label slapped on you, since it does affect your ability to get insurance, but it's ultimately more important to get solutions to the SYMPTOMS, so you can also just stick with the descriptors.  Fatigue. Pain. Insomnia. IBS/digestive problems. And I recommend people 'understand' the history and present day situation of the medical industry, as it helps people figure out WHY things are as they are.  And then from there, I recommend people pursue providers who can help them in the short AND long-term! Massage therapists, physical therapists, chiropractors and others who do manual therapy or bodywork do just that! But LEARN HOW TO FIND A GOOD ONE for YOU and your particular needs. Thanks to About.com for their consistently good information about CFS and FM.   

Below, you will find a blog that I transferred here (in February 2013) that I created the first summer Lumigrate was on the Internet. I'd been invited within two months of Lumigrate's being on the Internet, to speak at a chronic pain conference in Berkeley. I spoke mid-afternoon and represented OT but moreso the YOU Model was what I spoke about, not overall occupational therapy (that's old hat, everyone knows what OTs do)(joking, NOBODY knows what OTs do, but what I do with the YOU Model and the 'occupation of health care' is very unique, I created it and there's simply nobody else out there doing it. Yet, I hope others will want to train with me and 'do the You!', as it increases in popularity.

Then Dr Zampach was the last speaker, before the Grand Pooh Bah, Jacob Teitelbaum, MD, took to the stage. I actually learned of the conference just as I was talking with Dr Ts marketing guy so told him about it, and they were able to get 'in on the action', as was I! It was quite a thrill, particularly so quickly after I'd jumped from being an OT in insurance-based medicine to essentially being the concierge and desk clerk of Lumigrate, within the village of providers that we have as our experts!  This blog has had over 2,500 reads with my giving it VERY little promotion, telling me that people are interested in this information. SO, that is why I created this topic! It's YOU telling me what YOU find helpful, and then I spend time getting more information here at Lumigrate to meet that need. So thank YOU for reading, and please remember to tell others, particularly the providers. 

The Role of Physical Therapy in Chronic Pain Management", by Christine Zampach, BS PT, MEd, DPT

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Monday, July 27, 2009, 9:48 am, by Mardy Ross [3]

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The last speaker of the day was Christine Zampach, BS PT, MEd, DPT, who is an Associate Clinical Professor, UCSF Department of Physical Therapy and Rehabilitation Science as well as Physical Therapy Consultant, UCSF Pain Management Center.  She presented on 'The Role of Physical Therapy in Chronic Pain Management'.  My earlier presentation touched upon the difficulties of chronic pain patients I had worked with in their previous pursuits to find a PT; many had tried PT but the treatment had caused a flareup so they didn't go back.  I really suggest to patients they follow up with providers, even if it's 'that didn't work for me' and perhaps even bring in resources to work with them or ask to be referred to a different PT.  This blog can serve as a resource for patients to suggest providers read to get some clues from an expert.   All therapists have things that are their 'thing' and not.  So it was good to hear how the students at UCSF are being trained.   Highlights from Christine Zampach's seminar:

Our body is not wired to understand chronic pain, so it falls back to acute pain strategies -- we start 'guarding' and not moving.  'Kinesiophobia', or fear of movement, occurs.  People will 'disassociate' and it is hard to point to where the pain is.  Much of her treatment is functional, as insurance requires functional goals.  The central nervous system changes when in pain and it gets 'all wound up' and it's 'like a ping pong ball bouncing around in your head, and it ends up 'emotional''.  And since PTs spend increased time with patients, they can catch when the nervous system is going awry (as in complex regional pain syndrome) and intervene with treatment as well as correspond with the physician.  'Neuroplasticity' occurs with pain (see previous blogs by Drs. Teitelbaum and Rand) and the nervous system is rewriting what to do, and we lose the ability to inhibit pain.   Pain patients' 'motor patterns' (how we control how we move) deteriorate, losing fine motor control and having tremors.  So a PT who can intervene with sensory and motor mapping, pacing, and developing "the inner eye" ("Where am I in space? How do I recognize it? How do I affect the space around me?") can benefit patients.  She utilizes Feldenkrais techniques as well as practicing in the mind how to move.

How she recommends PTs work with chronic pain patients: Recognize their physical limitations.  Understand the psychological piece of chronic pain.  Bring in spirituality if appropriate, which it normally is.  Have patience.  Practicing how to move effectively and efficiently (practicing mentally and physically -- it's been proven people who learn a new skill and then only imagine doing it do better on retest than those who physically practiced the new task the same amount of time). Start with TWO or THREE exercises (this is something I saw in practice as well -- PTs who treat orthopedic patients give too many exercises to chronic pain patients and set the repetitions too high, as opposed to 'until you start to tire, then 1 or 2 more).  Lastly, realize that progress can be very slow with these patients and treatment often is appropriate for far longer than the insurances typically reimburse, which can require some commitment and craft with submitting paperwork.

We hope this is beneficial to patients and PTs alike, and hope this series in the past week has been of interest and help to anyone interested in chronic pain and it's treatment.  Here's one link about Feldenkrais www.feldenkraisinstitute.org/articles/c_clinical.html [4], and we recommend you study others if you are interested. 

Again, the link about The Chronic Pain Documentary Series is artvdo.wordpress.com/ [5], and we certainly are looking forward to it's coming to fruition after such a great kickoff converence -- it was a knowledgeable, invested group that came together in Berkeley -- providers and people with chronic pain, and a number were both!  Very interesting.