Hypermobility Syndrome: Recognition and Management for Physiotherapists

[Guest guest]

This is a sort of book report. I haven't finished Hypermobility Syndrome:

Recognition & Management for Physiotherapists yet, but it's already sparked some

intense reaction. I know some of what I'm reporting has upset some of you in

the past, too -- but I welcomed the chance to rethink the issues.

One of the problems I have with the book is fundamental philosophy. Some

authors term as " beliefs " problems that can be factual: " Pain equals damage " and

" I'm too mobile, I might put my joints out if I do too much. " These are

included as " unhelpful " or " erroneous beliefs " . One might as well talk about

believing the sky is blue and that rocks are hard; while correct on a

metaphysical

plane -- everything is a belief, Madre! -- metaphysical planes are notoriously

ill-suited to reality. I haven't noticed any Utopias recently, and rocks seem to

hurt no matter what I think they are.

Other bad " thoughts or beliefs that sustain concerns about tissue fragility,

rather than resilience " should be guarded against, because " otherwise it can

be possible for them [hypermobiles] only to see a bleak future where they are

at the mercy of their tissues. " Particularly pointed out as unhelpful is " use

of a tissue damage model. " Well, OK, but -- this is a legitimate concern for

some of us, isn't it? If you're going to lose skin or rupture vessels, that

would seem to me cause for concern. Even sympathetic doctors are called to task

for sustaining unhelpful beliefs with statements such as, " You must be

constantly dislocating your joints. " This is NOT a " belief " !

One sign of the shaky basis for this confusion of is clearly demonstrated

when the authors define the desire to find treatment as symptomatic of an

unhealthy belief: " These feelings can help maintain a search for an answer or a

cure, so a history of doctor, physiotherapist or alternative therapist

" shopping "

is not uncommon. " Instead of pointing out medicine can't do anything

effective but still likes to charge you for office visits, the authors

effectively

blame the patient for going to doctors.

Doctors even get a free pass on this point: " It does take skill, though, to

recognize when a patient is using treatment rather than self-help [and] to

elicit where the lack of confidence in self-management lies…rather than

perpetuating ongoing crisis treatment that maintains dependency. " Hard to argue

with

someone who thinks treatment is addictive instead of recognizing a search for

effective improvement.

I will admit, I'm grateful for the first half of my life, when I didn't know

what was wrong. I accomplished a lot that I wouldn't have with the knowledge

of EDS. Repression is a useful tool, and might not really be a bad thing. Of

course, I might not have the nerve damage now, but still. Much of what I'm

accomplishing now is built on the hard work of those unconcerned years. So

understand that while I truly believe in the capacity of the spirit to overcome

many

things, I think calling for a patient to produce a miracle is NOT good care.

Because I also have to admit those years weren't perfect. I was coming to the

conclusion I was a failure, until I found out about EDS and could recognize

the patterns of its presence in my life and history. While I say I'm grateful

for those earlier years, I'm even more grateful for finding those patterns, and

more recently, being able to weave life around those patterns.

One paper reports, " The patient needs to learn to struggle with their

illness, not against it. " An obvious problem here is that the authors find that

statement compatible with the definition of EDS-as-an-illness as a bad belief;

but

how can you struggle with something that you're not supposed to believe? By

the way, I find living with EDS isn't a matter of struggling with it; it's

surfing the Tao, it's finding the easiest dance between my body and what I want

from it. (I was going to say, " what I want from what's left of it " -- but that

would be a bad belief, wouldn't it?)

Another point of irritation is a tendency to talk of " common traits of

chronic pain sufferers " , as though the complex of hypermobility solely presented

as

chronic pain syndrome; even that if non-narcotic pain management is effective

in one area, " it can be argued that factors contributing to its effectiveness

are likely to include those that are also pertinent to hypermobility. " And " …

others with pain equally severe have, with persistent effort, had success in

managing it themselves. "

Even when they are forced to " an acceptance that all pain has a biological

cause " they immediately weaken the declaration with " and all patients with pain

have a psychological response to it. " They call into question patients who

have " no explicable reason for their pain other than hypermobility. " That's not

enough for them, evidently. Authors argue against treating pain

pharmaceutically because most patients still have pain even on the drugs. Yes,

of course,

it's pain MANAGEMENT, not pain elimination. There's a refusal to admit there

might be other related issues causing pain -- for instance, entrapments fail to

get any mention that I've seen yet, and they're (NOT my biggest problem)

probably my biggest pain problem , now that my overall pain is under SOME

control.

I'm relieved to find that many of the recommendations are very much in line

with how I've started restructuring my life. For instance, to vary tasks in

short intervals as a means of avoiding the stress of (or lack of) monotonous

movement; multiple short rests are beneficial, where long ones can be harmful

over

time; buying small amounts of groceries more frequently, to avoid excessive

force and gain exercise. Things like that. There are many more suggestions to

consider, and it will take some time to do so -- because I've been correct

evidently in doing things slowly and gradually. (Actually, it's a cosmic karma

joke: make me a fire personality in a water body. Slow and easy was something I

hadn't learned yet. In case no one noticed.)

There are statements, though, that point out differences between (at least)

me and the so-called norm. " For the majority of patients the first symptom is

pain. It is the symptom that causes the most disruption to daily life... " No

denying I have pain, and it's chronic because I've had it a long time, but the

chronic pain is only a part of the problem; there's crushing a nerve briefly,

hands and legs going numb, dropping things when wrists fail to work

momentarily, making mistakes in performance because some fingers collapse

sideways due

to position errors smaller than I can sense to correct for, my fingers

suddenly being unable to even grasp the Mac's mouse, falling on my face when an

ankle

wonks out for one step. The mechanical problems are the worst to me, not the

pain. I have to say, despite the occasional migraine that I may not catch in

time, my pain's as controlled as I want it to be. Most of the time, the things

I do are not motivated by pain; the restrictions are not because I hurt, I've

always hurt, even when I was young, happy and foolish.

Another large, perhaps singular difficulty for me is perception based.

There's evidence of nerve damage in my arms and legs. I've mentioned the high

degree

of noise in my sensory input. You're all familiar with skin crawling, or

numbness from blood-flow restriction…to me, this is almost constant somewhere,

and

this line noise -- interference -- whatever, happens I know of in my sight,

hearing, touch, and I'm beginning to suspect my smell and taste as well. Are my

nerve cells affected by being separated too far -- are my sensory organs made

from defective connective tissue -- what's going on is so far unexplained,

but it's a major problem for me, and possibly me alone. It's very tiring to

process reality through constantly shifting interference. There are other

singularities with me, too, judging from this book. However, I feel some things

are

being missed, because at least one case study reported feeling like a " bag of

fleas " , which is a very good description of my touch sense disruption.

All the negative discussion of hypermobility and " erroneous beliefs " has led

me to re-examine the issue of my disability, something I do at least weekly.

My therapist told me once that was a good thing, helping me avoid that very

" perpetuating ongoing crisis treatment that maintains dependency " mentioned

before. I've been trying to disregard any self-restricting programming, and to

maintain an openness to miracles; and the answer remains, I am disabled. There

is

not enough good time in my day to live a normal life now; I do it in segments

that when strung together simulate a life, as long as you don't look past the

public surface, and with the assistance (when I can articulate what I need) of

and a very few other people (including y'all, who provide as much as

a group could, I think). So…I'm grateful I'm finally making some headway with

housework and some slow progress writing music, but that's an enormous

improvement that takes most of my physical capital each day.

There is much in the book to learn about ourselves, too. I have found myself

wondering why, when I'm well aware I shouldn't be pushing joints to extremes,

I still find myself sitting or standing in ways that are, simply, abnormal --

but the simple explanation is, our joints are more stable when pushed to

extremes than they are at rest, so I sit with my feet and legs flexed, my

shoulder

blade gripping the seat back, etc. because it feels more stable. Another

discovery is that we ALL are ingenious in movement -- we find ways to do things

differently than others; despite my extreme shoulder laxity, I still test

normally in areas I shouldn't because I've learned to use physics (I brace my

arm

bone against the socket edge to allow movement strength while it's out of

place).

And I've heard several times that my range of motion is normal, despite my

stiffness and pain; the answer is, normal compared to non-EDSers, yes, but not

normal for me and what I expect.

I intend to use the book to figure out how to improve on what I'm already

doing -- figuring out how to keep as much activity as possible in my day without

causing any severe stresses. I suspect, from the incredibly difficult time I

have trying to prevent numbness in my arms, hands, legs while doing (almost)

anything for more than 10 minutes at a time, what I can do is not get worse, and

make myself a bit more productive by increasing my efficiency. (In describing

the possibilities of a patient with nearly identical shoulders as mine,

authors warn " it is unlikely that a shoulder with this degree of hypermobility

will

be able to sustain heavy loads, or even light carrying, for a prolonged

period. " What, I can't carry keyboards around any more? I already knew that. I

can

still write music, though. Just slowly.) And I'll learn a lot more about how

doctors and PTs think in the process. Alright, maybe it WAS worth the $50.

Mark

P.S. One unfortunate side effect of reading all this is: I really feel lousy

this morning about myself. Reading over and over again that this shouldn't be

a problem makes me feel childish and, well, depressed that it's all my fault.

Obviously according to these authors, I shouldn't have a care in the world.

Not a good thing.