expand cut tags

No cut tags
ftfisher: a spiral of stones on a purple background: marble stones in the center, basalt at the edges (Default)
[personal profile] ftfisher
Ehlers-Danlos Syndrome is, fundamentally, a genetic defect that affects the construction of the collagen protein. This has extremely far-ranging effects on the body since the connective tissues that hold our bodies together are constructed from collagen. EDS is part of a whole family of connective tissue disorders, including Marfans and other disorders. They are frequently inherited and are often found in circus/performer families, particularly those who perform contortionism. There are six different classifications of Ehlers-Danlos, each with their own set of symptoms. Within EDS, Hypermobility type is the most common form.

In Hypermobility EDS, the main symptom is the characteristic it is named after: hypermobility. The ligaments of the joints are the single-most affected tissue; they show extensibility but no elasticity, ie, they stretch but do not snap back. These leads to weak, unstable joints that are easily fully dislocated. Individuals with EDS usually have two or three particular joints that are extremely weakened and prone due to some particular injury or incident having damaged the ligaments significantly. However, all joints are affected. The second major symptom, and one that is usually required for diagnosis of EDS, is velvety skin that is hyper-extensible, stretching significantly when pinched.

Poor wound healing is also seen, both superficial and deep; surgery of any kind is far more difficult in individuals with EDS. Individuals with EDS also often see issues in absorption of nutrition and therefore weight can sometimes be difficult to manage, especially with most forms of exercise made difficult by the joint problems. The immune system is often compromised if by nothing else than the chronic stresses the body suffers in EDS.

The major disabling aspect of EDS for sufferers of Hypermobility type is chronic joint and musculoskeletal pain. The frequent dislocations are, obviously, very painful and the body's response to them is problematic as well: the joints are chronically inflamed as the body responds to the damage by attempting to immobilise the joint with swelling. Further, the muscles will, in an attempt to stabilise joints that cannot stabilise themselves, lock down and that long-term severe muscular tension is extremely painful. The chronic pain and inflammation, of course, has its own effects; the long-term build-up of pain chemicals has a lot of detrimental effects. Fatigue, muscle weakness, and depression are among them.

There is no cure for Hypermobility EDS; at this time, they have not even tracked down all of the genes involved. It is usually managed with a combination of drugs and life-style choices/changes. Massage therapy is very, very valuable in treating and managing any disorder whose major symptoms include chronic joint and muscle pain; EDS is no exception.

There are two main things that must be borne in mind when working on a client who has EDS. The first is that stretching of any kind is not only dangerous, as it risks a dislocation, but is fundamentally useless. The locked-down muscles will not stretch while the ligaments will stretch far past where they should, taking damage in the process. Stretching should never be used on a client with EDS. The second is that the skin tears easily and heals slowly. It is even more important than ever when working on a client with EDS that fingernails be kept short and well-filed.

Joints should be handled with utmost care; the shoulders, hips, knees, and ankles are among the most dislocatable, but the spine and neck should be treated with care, too, for obvious reasons.

Among the main benefits of massage therapy for a client of EDS will be the flushing of toxins: the lactic acid, pain chemicals, and other muscular toxins that accumulate due to chronic tension. Relief from muscle pain is important and part of the appeal and usefulness. However, deep tissue work cannot be tolerated. The therapist should focus on Swedish strokes with intermediate pressure interspersed with judicious, careful trigger point work (fibromyalgia is not uncommon in EDS patients, and fibro tender points should be avoided) and basic therapeutic techniques without significant pressure behind them. Unsurprisingly, lymphatic drainage is very good for EDS patients, as it can significantly reduce the swelling and retention of water in tissues as well as flushing toxins and easing the load on the immune system.

Geothermal therapy (hot stone massage) is very effective in loosening chronically tightened muscles but should be approached with caution with a client who has EDS; if the chronic inflammation is not under control, the heat will worsen it. Cold stones are generally fine, as they reduce inflammation and have an analgesic effect. If not sure, the therapist should have the client consult with his or her doctor about the value and wisdom of hot stone massage at a given point in time.

A client with EDS should be checked in with regularly on pressure and pain levels; a skewed pain scale and extremely high pain tolerance is common. It is very easy to go in with more pressure than is appropriate to the disorder if a therapist is not careful.

Most EDS sufferers are diagnosed late and have had poor experiences with the medical world; many are told for years that it is in their head or that their symptoms are benign. Patience and a willingness to listen to what the client has to say about their body is important with any client but it is absolutely key when dealing with anyone who suffers one of the "invisible" chronic pain conditions.

EDS is a disorder that affects a client's whole life in a thousand ways, large and small. Massage therapy can help control and manage some of the symptoms, but it isn't a magic bullet. It's only one part of overall management of the disorder. A therapist will have to work with the client and the other medical and para-medical professionals who are involved in treating the client. That said, massage therapy can and does provide relief and help to those who suffer from EDS.

ETA: If you're visiting this through the main journal rather than a direct link to the article, [livejournal.com profile] mikeuggen has left an excellent elaboration on the most effective modalities when working with EDS and several people have commented with their own experiences as people with EDS. It's well worth reading through the comments!

Date: 2009-01-09 04:07 am (UTC)
From: [identity profile] batdina.livejournal.com
thanks so much for this!

EDSers thank you!

Date: 2009-01-11 12:49 am (UTC)
From: (Anonymous)
Thank you from our family also. We have EDS, have done well with massage..and our EDS daughter is now a massage therapist herself. In addition to the methods you mention, she also uses cranial-sacral therapy, myofascial release, magnetic cupping and ESPECIALLY energy (polarity therapy) work, both to help her clients and save her own joints!

Date: 2009-01-11 03:49 am (UTC)
jeshyr: Blessed are the broken. Harry Potter. (Default)
From: [personal profile] jeshyr
This looks fantastically useful and fits with my own experience. I find that stuff which releases toxins, including lymphatic drainage, is teriffically helpful in the long run but we had to start with minute amounts because my liver overloads at the drop of a hat and I'm pretty highly toxic. I can have a decent amount now, but I still get a post-massage-hangover even with drinking tons of water it lasts 24 hours or even 36, but the benefits for the rest of the week and in the longer term are worth it.

Primer on EDS for the Masssage Therapist

Date: 2009-01-19 03:53 am (UTC)
From: (Anonymous)
Thank you for the wonderful article. I have EDS and have had gentle massage treatments from a LM Therapist in the past and it was very helpful. With joints being so hypermobile, the head and neck areas are a real concern. Varicosites are very common in EDSsers. The GI tract,Arteries and Veins are more frail so gentle work is important as you said. I agree with Mike Uggen's comments. He does a great job! and is very knowledgeable. I too work energetically on people and this helps to minimize bruising. I like to use Reiki myself with good results. I'm a RN and turn myself "on" with Reiki before working with people. I use Lymph Drainage on myself,which helps with swelling in my feet and legs. I hope you learn Lymph Massage,it really works well. Thank you again for the wonderful article.

Date: 2010-07-05 03:13 pm (UTC)
trialia: River Song (Alex Kingston) drinking a cup of coffee. (Default)
From: [personal profile] trialia
I don't know if you know this, but as an addendum to your post: not all HEDS sufferers have skin involvement. Lots of secondary symptoms and so on, but not always skin hyperextensibility - I don't, though my skin is velvety, thin, easily cut and bruised, and I get a whole shedload of broken capillaries showing up. My father has skin symptoms I don't, and I dislocate and subluxate more than he does.

It can vary - the dermal hyperextensibility's no longer required by half the experts, or so my research tells me.

Thanks for the post, though. Some of it may help me when I finally get to see a physiotherapist (it's been years, and the last one had no idea what she was doing).
Edited Date: 2010-07-05 03:15 pm (UTC)

Thank You

Date: 2011-02-27 08:42 pm (UTC)
From: [personal profile] aliha
I have EDS and really love a good massage. However, I went to an Acupuncture Clinic run an Orthopedic Dr. The 1st clinic visit started with a massage that hurt so good, followed by acupuncture. When I returned for my 2nd, 3rd and 4th visits they wouldn't touch me because my back was very bruised from top to bottom. I hadn't noticed.

Another time, a Physical Therapist did a dry back massage on me. Holy smoke that just plain hurt me.

I'm going to print out this fantastic article and some of the comments. I think this is invaluable. I'm thinking if it scares off a Massage Therapist, maybe I don't want them working on me.

Date: 2013-06-04 01:39 am (UTC)
subluxate: Sophia Bush leaning against a piano (Default)
From: [personal profile] subluxate
Hi! I found this via a Google search relating to HEDS and absorption. Is it okay by you if I print this for the massage therapist I'm hoping to start seeing?

Style Credit

Page generated Oct. 22nd, 2017 04:42 am
Powered by Dreamwidth Studios