Gathering place for osteopaths
Ehlers Danlos and hypermobility syndromes
Hello. Does anyone have any experience of treating patients with Ehlers Danlos? other diagnosed or suspected hypermobility syndromes? What do you treat them for and how? Does it work?
Replies to This Discussion
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Permalink Reply by Small Fry on -
Well you can't change somebody's genes, but by that argument we're all in trouble in some way or another - in any health problem there are factors that can be changed and factors that can't. While medical diagnosis in this case focusses on things that can't be changed, I can't see the point in that.
Somebody who has genetic predisposition and takes good care of himself is likely to have a better prognosis than somebody who has genetic predisposition and doesn't take care of himself. So look to the things that can be changed. Nutrition is hugely important in connective tissue health anyway, add a diet of burgers to EDS and surely you have a faster than necessary deterioration. Similarly, stress, and postural strain, are not going to help the situation, organs in trouble for other reasons will still make the situation worse, they won't make it better.
Hypermobility is discussed by Still among others, and he seems to see it as largely a matter of nutrition to the tissues. That involves blood and all the things that control where that goes. Given that there are various genetic hypermobility syndromes, Wikipedia highlights the importance of accurate diagnosis. I would like to know why: how much is really accomplished by accurately distinguishing one incurable problem from another? If our patient is alive and functioning now, then who is to say we can't at least slow the deterioration by taking care of some basic areas.
So lots to do besides lamenting the inheritance and giving up.
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Permalink Reply by Sharon Beckwith on -
Hhmm yes I totally agree on the need to focus on the things that can be changed but don't you think having an accurate diagnosis in cases like EDS is important for the person (and practitioner) especially when there can, in some cases, be associated features that could put them at high risk (arterial or uterine rupture, tissue damage, etc)? On the other hand, if you had some of the minor symptoms but did not have one of the more serious forms surely you'd want to know that was the case.
I am interested in your point about diet. I read something about vitamin C being of benefit where the syndrome includes excessive bruising. Are there any other specific suggestions or guidelines that you would give to someone suffereing from such conditions...apart from making sure they have a glass of orange juice with their burger ;-)
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Permalink Reply by Small Fry on
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Far be it from me to offer treatment guidance here. Apologies, but I'm sure you'll understand this could be less than helpful. I take your point about confirming a diagnosis of connective tissue disorder, I would certainly want to know if that was the case. However, any and all such problems would be cause for caution, I don't think this depends on which precise variant of EDS we are talking about. In osteopathy, naming the disease is seldom the end of the investigation anyway, and often there are far more important questions to be answered.
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Permalink Reply by Sharon Beckwith on
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Of course! It wasn't really treatment advice I was after but I can understand that this is not the appropriate place to go into specifics. Perhaps I should have explained from the outset that I am a second year student and just doing a bit of research for a pathology presentation. I wanted to identify some practical implications and real life treatment scenarios. Thanks for you comments though. They've given me some ideas and useful insight.
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Permalink Reply by Small Fry on
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Hi, sorry to be so vague, under the circumstances you probably need something more substantive. Unfortunately this is the bind we're in when we begin with a medical descriptor for the problem and try to discuss it osteopathically. If we look for a specific answer based on a specific medical view of the problem then inevitably we will have nowhere to go but the medical textbooks (the ones that are always worthless ten years after publication).
In a way, I would approach this the same way as any other condition - ask what could this particular person, regardless of the name of their condition, do to be healthier. You are absolutely right that vitamin C and tissue health are intimately related, and most of us are well short of the amount of vitamin C we need, by some measures.
But nutrients do work synergistically, so a complete lifestyle shake-down is always a good starting point with any patient. And they need to be absorbed, so that brings into question the digestive system, the channels of elimination, and the various structural, postural, vascular and neurological factors through which those things are regulated, and then of course, on to the things that could disturb them.
I suppose the way I would approach a project such as this would be to create contrast between, on the one hand, the myth of certainty of genetically predetermined future, set in stone; and the environmental factors that interplay with that future and throw it off course. The truth is that genes do not create an unshakeable prognosis, environment and epigenetics are huge, and as osteopaths we should seek to ask what we can do to increase that separation as much as possible. I have a genetic predisposition for a broken leg if I stand in front of a bus, hence the osteopathic approach to this 'weakness' would be not to stand in front of a bus. The bio-tech approach would be to cross my genes with those of an elephant so that my offspring have thicker femurs. Unfortunately, modern medicine seems for the most part to be betting the future on the bio-science approach, at this point in history.
So this is a great opportunity to highlight the difference between uncontrollable random inevitability and interventions based on rocket science; and the osteopathic view of myriad opportunities to make a difference through the basic needs of life. Note: this is not necessarily the same as osteopathy vs. medicine, but it does suggest that the medical descriptor is not a good starting point for helping.
Someone just sent me an interesting article highlighting just how less than clockwork and certain genetics really is: http://www.thenewatlantis.com/publications/the-unbearable-wholeness...
Hope that helps :-)
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Permalink Reply by Sharon Beckwith on
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Thank you. Very thought provoking. I particularly like your predisposition to broken legs...and thanks for the link too. I hadn't come across the New Atlantis before. Both article and journal look fascinating.
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Permalink Reply by Small Fry on
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Nor had I, it just arrived. I appreciate this is one slant on the whole question. I hope others will chime in with their experiences also.
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Permalink Reply by indikate on -
Hi Sharon, thank you for sharing this, how s student life?
I possibly represent a minority view (I regard osteopathy as a medical philosophical paradigm, as opposed to a manipulative science) but I would like to share it as this is a good case to consider. I feel that as an osteopath I dont treat conditions such as back pain, hyprertension; infantile colic,(although I recognize their diagnosis) but instead try treat the person wearing the symptoms. This means making them healthy so that their blood is highly oxygenated and an efficient nutrient delivery system, and giving them advice very similar to Small Fry re D3 and ascorbate. Osteopathically we need optimal nutrient delivery coupled with speedy free flowing elimination of waste as well as an appreciation of the psyche so it really is suitable for all. My youngest patient was 26 weeks gestation and my oldest 100 years (and I certainly did not need to "manipulate" them).
The patients want to feel better, healthier so we are an excellent choice for anybody whatever their health levels or medical diagnoses.
I wish you well with your studies
So for me osteopathy is not about just fixing problems but more about boosting health so that the "condition" lbp eds pcos etc (ie the patient) responds.
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Permalink Reply by Sharon Beckwith on
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Thanks Indikate. It has been a really interesting condition to consider given that osteopathic opinion seems to be divided - and in some cases ambiguous - on whether anything useful can or should be done for this kind of patient. I think I've been convinced that treating the person as a whole is probably the way to go ;-)
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Permalink Reply by Small Fry on
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Hi Sharon, I'd be interested to know what other suggestions you have had. With these things, there's usually a spectrum of views:
a) can't do anything, totally incurable, no evidence of benefit etc etc.
b) don't know if it can be helped, but there may be a way if you're willing to try, and the process will do you good anyway.
c) absolutely, have it cured in a month.
As a patient, I know where I would place my bets.
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Permalink Reply by Sharon Beckwith
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I didn't find many people who had treated Ehlers Danlos per se - although a lot had come across some form of hypermobility. Most of those I talked to fell into the second category - one had had positive results using body adjustment. However one or two expressed concern that treatment they gave was either ineffective or even detrimental. The problems it seems came from not being able to gauge the effect of treatment and a tendency to overdo it. One practitioner who regularly manipulated a hypermobile patient had positive results in the short term but was slightly concerned about possible long-term effects.In this case patient and practitioner were aware of risks but the immediate release and ability of patient to carry on with life without crutches and debilitating pain won the day. I think the difficult thing must be managing expectations of patient and practitioner alike.
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Permalink Reply by Small Fry
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Thanks, that's interesting. I guess we can't manage expectations if we don't know what to expect - the only thing worse than false hope is unnecessary despair. Every case can be improved in some way, it's a question of working out how - and it might not be our favourite OA thrust! Shame!
It sounds like there may be a tendency to 'all or nothing' treatment among us - "can we apply our treatment or not in this case/to manipulate or not?". We were taught this at college - work it all out with a slide-rule, then once you have got a green light, treat the patient. No doubt this leads to much finger-crossing amongst early graduates. I would prefer to see a less ballistic approach and a more sensitive, responsive one - "what are the tissues accepting, and how are they responding? What input does a case like this deserve/demand/require/tolerate?".
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