Fantastic Pain in EDS Document!

Mark (a.k.a. EDSerMark) has written for EDNF an incredibly comprehensive article describing the pain in EDS (chronic acute pain...I love it!) and options available for addressing that pain. It also includes the benefits of PT, though goes on to explain how the wrong types of PT can harm us. It also describes how EDSers may not respond to lidocaine. I am thinking this is going to have to go into my packet for doctors...though at 16 pages long, maybe just providing the link would suffice.

I encourage everyone to read, save to favorites, and share with the doctors and other interested parties in your life.

http://www.ednf.org/documents/Pain_and_Managing_Pain_2012S.pdf

I am leaving this thread as "shared with public" due to the need to get this important document as widely spread as possible...though consider what you want to write here before hitting "post" because it will be possible for anyone in the world to view. So please do not share any personal information.

Mark...you continue to amaze me in your talents and willingness to help others. Thank you.

Report post

29 replies. Join the discussion

Bravo! An excellent resource. Thank you Mark.

Report post

SASO,

Thanks. Yes! It is the best, most thorough, detailed, researched, Ehlers-danlos pain information ever compiled! Even better that it's from an actual person with Ehlers-danlos syndrome. I imagine it was A LOT of work. Thank you, Mark & EDNF.org!!!!!!!!!
I'm glad the thread is public !
Unhinged

Report post

Awesome job Mark! Thank you for your work for us!

Report post

Yes, I agree! I've printed out copies for every one of my doctors!

BRAVO, MARK !!!

Report post

INCREDIBLE WORK!!! So needed, so completely explained and kept in layman's terms!!!! Thankyou Thankyou Thankyou!!!!

Report post

Thanks for this link! Trying to get things together for my doctor.

Report post

wow THANK YOU!!! this is an incredible resource that I am going to treasure and also spread among those I know that are in pain
THANK YOU THANK YOU

Report post

{blush} Thank you all very much. I'm glad I can help.

Report post

Mark, thank you so much for writing this! I appreciate it because it looks like you put alot of time effort and research into is. I am impressed. I would have thought a doctor write this if I didn't know. I have a question about something you mentioned in the article and am wondering where I might be able to find more information. You mentioned EDS possibly affecting the immune system. I seem to get sick really easily but didn't think it was connected to EDS. I wonder if maybe I am incorrect. Thank you for all of your hard work and for sharing this!

Report post

All we know—and when I say we, I mean a couple of the doctors see it, as well as there being anecdotal evidence—so far is that there's SOMETHING going on with immunity. Far more of us have immune system problems than a normal population would have. There are two references to this so far. First is http://www.ednf.org/index.php?option=com_content&task=view&id=1490&Itemid=8 8888988, DO ABNORMALITIES OF EXTRACELLULAR MATRIX ELEMENTS LEAD TO AUTOIMMUNE DISORDERS? which concludes "The number of RA patients far exceeds the predicted co-occurrence of this disorder with EDS. The same is true, albeit to a lesser extent, for the number of patients with Raynaud's. This raises the possibility that abnormalities of the extracellular matrix might contribute to the development of autoimmunity in the presence of other environmental or genetic influences." There is also statistical evidence that EDSers are far more likely—10 to 11x more likely—to develop MS (an autoimmune disorder) than the general population (http://msj.sagepub.com/content/14/4/567.abstract).

Not enough to hang your hat on yet, but there's something going on we need to know more about.

Report post

Thank you Mark for all of your hard work. You may never know how many people you are helping.
Many blessings.

Report post

wow! What a thorough, wonderfully written article! Hope you are proud of yourself Mark!!

Report post

This is a great hand-out for doctors as the PowerPoint presentations from last year's conference are too much to expect them to read and digest. Even very empathetic doctors give a doe-in-the-headlights look when you attempt to describe chronic pain. This will also be helpful for disability claims . . . it really doesn't help that I look much younger than may age but too sick to work without serious cognitive loss = high error rate. Not only am I very tired but I feel that it is a sham and a lie to sell myself as a good hire when every day is a crap shoot as to whether or not I will be rested enough or pain free enough to perform my job.
Thank you, thank you, Mark!!!!

Report post

Dear Mark, Thank you for your hard and thorough work! Mary

Report post

Way to go, Mark! It's so all-encompassing and supportive (so far from what I've read). We are all blessed to have you on our side :)

Report post

Mark,

What an excellent piece of work, which I will be taking with me to the new Pain Clinic!

I am a newly diagnosed EDS-III. For the last 12 years, I was told I might be Marfans, then Sticklers Syndrome, then told I was a non specific Connective Tissue Disorder probably a new but unnamed mutation, and now it's EDS.

I have a Chronic Pain blog called "Nip Pain in the Bud & Let Your Soul Blossom" which deals with all types of chronic pain. Two weeks ago I posted a VERY important piece about the laws being passed against pain medications across the U.S. and one federal one being considered. I hope you will read it the piece and post your thought in the comments - and if you agree it's important please tell others to read it, too:

Should Politicians Decide Your Pain Level?
http://nippaininthebud.blogspot.com/2012/05/should-politicians-decide-your- pain.html

Mark - having done all that wonderful research, I would love to hear your opinion especially. I'm so worried about how the media is getting rabid on this issue.

This is my first post on the EDS boards. I look forward to having a chance to do more research and get advice on the issue that are most affecting my life.

Thanx for being here!
-DavCat

Report post

Everyone has already said it so well - we are truly grateful and sending you blessings. I believe the benefits of this information will continue to ripple out to help many. Someone else with EDS may even be inspired to put together information on other aspects of EDS. As we know - we are the ones who must advocate for us !

Report post

Amazing work! finally something that does explain EDS pain the way it should be heard and understood.

Thank you!

Report post

Thanks so much! I really appreciate your hard work. Reading that article really helped me understand why I'm experiencing pain. Thanks for taking the time to write succinctly about the EDS pain.

Report post

dear davcat,
i have skimmed your blog. you make several wonderful points. what amazes me is that politicians have made it so hard to get the opioids that help us so much and still let ritalin be dispensed so freely?! ritalin is really speed! one big problem with hyperactive kids is they can abuse the meds or sell them to friends.

when my mother died of ovarian cancer morphine was a blessing for her. i appreciated the palliative aspect for her and the whole family.

i am one of the people having problems obtaining the pain meds that are so helpful to me . the doctors are just passing me off from one to another. how did you get connected to the NIH palliative care team? i live near washington, d.c.

betsy aka lovvbugg

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders