Practical Pain Management Community Advice

Ehlers-Danlos and Connective Tissue disorders pain

From: AGlinskie - 2 years 38 weeks ago


I am starting this discussion for anyone who has Ehlers-Danlos Syndrome which is a connective tissue disorder involving collagen - or the glue that holds us together. We are super bendy and stretchy, we dislocate our joints frequently, break bones easily, and have a wide range of other problems associated with it - including severe, chronic and diffuse pain. The pain is caused by injury to our joints and soft tissues, and also for unknown reasons sever widespread pain.

If your a klutz like me, and are always spraining, straining, tearing or dislocating something and know what bone and tissue pain feel like....feel free to join right in :)

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4 Responses

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Here is an excellent article that deals with pain ....

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I don't know about diffuse pain, because I have EDS HT, and my pain is very localized, but it is in multiple places. I feel pain typically localized in my illiopsoas, hip flexors, IT band, shin muscles, rhomboids, traps, pectoral muscles, the SCM, and scalenes. I suppose I'm also unusual in terms of EDS HT patients because I have very good proprioception, except in the timeframe following multiple subluxations and dislocations. I have a few ideas about what causes the severe pain in multiple places. I think it primarily has to do with damage to ligaments, and chronic muscle spasms and such.

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Hello Dr. Green,

Thank you so much for responding the PPM readers about Ehlers Danlos. Please pardon the delay in getting back to you!

I have a writer working on a story about this condition and we are very interested in interviewing you.

If you'd like to contribute in this way, could you please email me directly at: I am the editor of the PPM patient portion of the website where we feature a number of pain patient profiles.

Here are some recent examples:

Becky's Journey: Integrative Pain Management Program Teaches Patient to Manage Chronic Pain

CDC Guideline on Opioids: An Added Source of Pain for Medically-Retired Police Officer

Hope to hear from you soon!


Is this good advice?

Dear AGlinksi,
We recently published two relevant ED Syndrome letters to the editor and responses in our November journal. You may find it here: Letters to the Editor: An opportunity to learn what is on the minds of your colleagues and patients.
The PPM Editorial Team