Practical Pain Management Community Advice

Ehlers-Danlos and Connective Tissue disorders pain

From: AGlinskie - 2 years 7 weeks ago

Hello,

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 ....

https://ehlersdanloscontemplations.wordpress.com/2013/08/19/pain-and-ehlers-danlos-syndrome-eds-a-guide/

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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: ann.gault@verticalhealth.com? 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!

Ann

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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.
Sincerely,
The PPM Editorial Team

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