Question
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brabara....thanks so much for your help....muchos appreciato!...

yeah...id be interested to hear what ure dad has to say about tmj!...i look forward to your reply.......no rush...

many thanks again..

David



Followup To
Question -
hi there!

thanks for your time!...very generous..

Ive been diagnosed with ehlers-danlos syndrome (type 3), which basically means i have lax, hypermobile, fragile connective tissue (ligaments, collagen ect). This means i have unstable neck, jaw and facial areas causing me to grind my teeth at night causing TMJ (temperomandibular joint syndrome) giving me severe ear and jaw pain.

QUESTION:

Do you know of any exercises that might help stabilise/strengthen, my jaw, face and neck(cervical spine)?...in the hope of lessening my TMJ symptoms?

many thanks for your help

David 25, UK

p.s can u identify with the below?


-  floppy, knock-kneed gait with feet turned in as a child
-  unnatural addiction to sport when young
-  hyperactive/anxious personality when young
-  body unwillingness to be relaxed, leading to feeling of being cold, only baths allow relaxation, and indicate how tense body is normally, and relaxation makes most EDS symptoms worse?..also alcohol signals how tense body is normally
-  TMJ jaw problems, being one of the main concerns, with a fear of hearing loss
-  unwillingness of eyes to relax, as it gives a feeling of eyes being pulled out, or fluctuating standard of vision, or dry eyes
-  constant neck strain due to keeping neck up, feel a need to rest it   against things
-  to stand upright seems a strain and unnatural
-  pain on soles of feet
-  limp greasy hair, due to impaired blood flow, and tension
-  aggressive, intense exercise helps, but only in the short term.
-  finding that lack of muscle tone/ exercise around the eyes causes eye pain
-  painful to sit relaxed on hard seats
-  RELAXATION MAKES THINGS WORSE, and MORE PAINFUL?


Answer -
Hi David,

I am actually going to get some help to answer your TMJ questions from my father.  He is a massage therapist who also has type III EDS.  I forwarded your question to him and will get back to you when he sends me more information.  I know that he has knowledge of some techniques for helping TMJ.

Regarding the list, this has been my experience:

- floppy, knock-kneed gait with feet turned in as a child

This is common for some (not all) people with EDS.

- unnatural addiction to sport when young

Not sure what you mean by this one.  For myself, I was active in ballet and gymnastics.

- hyperactive/anxious personality when young

There are people with EDS who also experience ADD/ADHD, but I don't know much about this one.

- body unwillingness to be relaxed, leading to feeling of being cold, only baths allow relaxation, and indicate how tense body is normally, and relaxation makes most EDS symptoms worse?..also alcohol signals how tense body is normally

My guess would be that the muscles are so busy holding the joints stabilized that relaxing would cause them to lose control of the joints, and therefore the body can't relax.  As for alcohol's affect, I don't have any knowledge in this area.  Mostly I have heard from people who have said the opposite - alcohol makes them prone to worse instability.

- TMJ jaw problems, being one of the main concerns, with a fear of hearing loss

I will get back to you on the TMJ issue.  There is a study on "EDS and Speech, Language, Hearing, Voice, and Swallowing Survey."  For more information, go to: http://www.edstoday.org/info/research.htm#Speech

- unwillingness of eyes to relax, as it gives a feeling of eyes being pulled out, or fluctuating standard of vision, or dry eyes

Not sure about this one.  It may be addressed in the study above.

- constant neck strain due to keeping neck up, feel a need to rest it against things

Last December I participated in another EDS research study.  One thing the doctors noted was my very weak neck.  They told me that many EDSers have problems with neck instability.  For example, if I let my head fall back, I can't bring it up on its own - I have to use my hands to pull my head up.

- to stand upright seems a strain and unnatural

Do you also have hypotonia - low muscle tone?  Do you think maybe it is just because the body is straining to hold itself together in this unsupported position.  I've met many people with EDS who have difficulty standing for long periods of time or who have to be fully supported when standing/sitting because they fall apart otherwise.

- pain on soles of feet

Foot pain can come from a variety of causes. I know people with EDS who have plantar fasciaitis and problems with ankle pronation (rolled inward) that can cause foot pain.

- limp greasy hair, due to impaired blood flow, and tension

Not sure on this one, but look into thyroid as a possible cause for hair problems.  I know other EDSers with thyroid issues, including me.

- aggressive, intense exercise helps, but only in the short term.

Probably you are releasing endorphins which ease pain in the short run.  Gradual, strength-building exercises are more important than short, intense work outs.  Short, intense workouts are usually more likely to cause injury.

- finding that lack of muscle tone/ exercise around the eyes causes eye pain

Not sure about this one.

- painful to sit relaxed on hard seats

VERY common in EDS.  Hard seats are usually not designed ergonomically and strain the body for anyone.  Having EDS just makes it more difficult to endure these seats.  I have to bring pillows when I know I'll have to sit in this kind of chair.

- RELAXATION MAKES THINGS WORSE, and MORE PAINFUL?

Most likely because the relaxed body is more unstable.  I know plenty of people with EDS who find they injure themselves in their sleep because the body relaxes and then they sublux their joints.

Here are some resources you should check out.

EDS Today (USA) - this is the group I work with.
http://www.edstoday.org

Internet EDS Support Groups
http://www.edstoday.org/support/internet.htm

EDS Support Group (UK)
http://www.ehlers-danlos.org/

Canadian Ehlers Danlos Association
http://www.ehlersdanlos.ca/

Ehlers Danlos National Foundation (USA)
http://www.ednf.org/

My direct email address if you would like to correspond further is [email protected].  You can reach my father, Mike Uggen LMP at [email protected].  He can help answer your questions as well and I have asked him to get back to me regarding the TMJ issues.  Mike also writes a column on massage for EDS at http://www.edstoday.org/newsletter/columns/massage.htm

-Barb
Barbara Davis  

Answer
Here is the info he sent to me...

> I don't know of any specific excercises for TMJ.  I do,
> however, know of 2-3 different treatment procedures that
> are effective.  One is Craniosacral Therapy.  A second
> is a specific pattern of Acupressure points.  The third
> which is what I use these days) is Directed Energy
> through the joints, both sides at the same time.
> I am opposed to most dental/orthodontic corrective
> procedures, primarily because the single biggest cause
> of TMJ in the first place is the dental/orthodontic
> profession.