Update June 26, 2018:
Vanderbilt University is conducting a Local Anesthetic Responsiveness Survey for people with connective tissue disorders. If you have the time, I urge you to take the survey to show the researchers how many of us have this problem.
Here’s a compilation of information and links from our tireless EDS champion, Shani Weber:
We have an odd relationship to topical anesthetics like lidocaine. For some of us, they don’t work. For others of us, it takes a lot more than usual for them to work, but once that threshold is reached, the topicals last longer than usual.
Those with EDS frequently have problems with local anesthesia as well as general anesthesia. This difference is mentioned briefly in “Pharmacological Considerations in Ehlers-Danlos Syndrome”: http://www.ednf.org/medical-professionals/pharmacological-considerations-eh lers-danlos-syndrom
The tendency for those with EDS not responding to local anesthetics is included in the Dentistry Medical Resource Guide: http://www.ednf.org/dentistry-resource-guide
and also in this medical journal article “Local anaesthetic failure in joint hypermobility syndrome” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079398/
“Do local/dental anesthetics fail for you…patients with EDS are resistant to lidocaine…” http://www.mdjunction.com/forums/ehlers-danlos-syndrome-discussions/general -support/2299144-do-localdental-anesthetics-fail-for-you
“The response to local anaesthetics (EMLA-cream) as a clinical test to diagnose between hypermobility and Ehlers Danlos type III syndrome.” http://www.ncbi.nlm.nih.gov/pubmed/2068541
“ Anesthesia recommendations for patients suffering from Ehlers-Danlos Syndrome” https://www.orpha.net/data/patho/Pro/en/Ehlers_Danlos_En.pdf
“EHLERS-DANLOS SYNDROME: COMPLICATIONS AND SOLUTIONS CONCERNING ANESTHETIC MANAGEMENT” http://www.ednf.org/images/stories/pdfs_medical/EHLERS-DANLOS_SYNDROME_COMP LICATIONS_AND_SOLUTIONS_CONCERNING_ANESTHETIC_MANAGEMENT.pdf
“Recommendations for anesthesia and perioperative management in patients with Ehlers-Danlos syndrome(s)” http://www.ojrd.com/content/9/1/109
Emergency room booklet info – link is broken?
Thanks for letting me know! I don’t know where it went, so I just removed the referenced to it from the post.
After 20yrs in chronic pain [much of it injury related] it wasn’t until I took my 12yr old daughter in to an orthopedic surgeon was EDS-hypermobility confirmed.
And it is highly genetic and displays differently in all of my siblings and my mother as well as my children. Age + injury seems to be a decider on when it becomes unbearable pain [for example, my 77yr old mother is just starting to have pain she can no longer tolerate]
Oh and yes, my daughter and I react well to opiate medications [in her case post surgical for a tumor; tolerance unlike her brother despite 10yrs age difference and large difference in size]
Others have had poor history with surgery and/or wake up mid process; like me waking up and screaming on the OR table before they could stitch my throat back up. I remember it clearly despite being about 12 myself.
I found this EDS blog via National Pain Report.
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Re: “Age + injury seems to be a decider on when it becomes unbearable pain”
This has been my experience as well. My mother didn’t start getting daily, almost constant, pain until she was in her seventies. However, I was a distance runner & bicyclist and pushed myself to extremes in my 30’s and 40’s. This must have constantly injured my body, so my intense pain started even before I turned 50.
Now in my 60’s, the pain is virtually constant and unbearable without the opioids my intelligent and kind doctor prescribes me. If only I’d known I had EDS, I would have been much gentler with my body, but I wasn’t diagnosed until I was 54 and the damage was done.
I’m glad you found this blog because I’m sure that more than a few of the 3,000+ posts will have useful info for you. You can try searching the blog to find areas you’re interested in, like “anesthetic” or select a tag like “genetics”.