Your version is limited in what the experiences of a lot of people have with EDS. Most people do not have the luxury of going off of pain medication, since every part of their body is excruciating without the pain medication. I have had EDS my entire life, and the pain has grown to an unacceptable level. I did not start pain medication until I was 33 years old. Needless to say, my pain became entirely manageable and I experienced very little pain after that. Given that your description makes pain medication appear worse for EDSers I had to say something about an entirely different experience with this syndrome.

EDS should be taken very seriously and people should be allowed to be comfortable in whatever way works for them. Even with aggressive physical therapy, tens therapy and acupuncture, there are other parts of my body which have quit functioning as a result of EDS. I have lost 30 pounds due to Gastroparesis, I have a chronic lung condition that often requires medication and oxygen to help me breathe and also will be forced to have a hysterectomy due to adenomyosis, due to EDS. It can cause extreme pain in an ordinary person and even greater in a person that has this disease.

Love the piece. I would say that it’s never good to say ‘there is little hope for a cure.’ I know that’s it’s probably a ways off but there are a few helpful things that are happening right now, not least of which is the Ehlers Danlos Network trying to get enough money together to research a mouse model for Vascular EDS. It’s not a cure, but it’s a start and the more noise and support that happens, the sooner something will happen.

The below is a link to trials for a disease called Recessive Dystrophic EB. Basically, this is a disease of collagen type VII, where the skin and fat are not properly attach and any friction causes severe blistering. They tested stem cell therapy on a mouse model and have finished Phase 1 Clinical Trials, inserting bone marrow stem cells which have helped the patients regrow enough collagen to reduce the severity of the disease. While this is not exactly the same to what is occuring in EDS, it’s definitely a step in the right direction.

http://www.jgsf.org/research-update.html

Don’t give up hope,
Rob

And, like you I have the same experience with anaesthesia at the dentist…in fact, I just had that happen a couple of weeks ago. It took 11 injections and 90 minutes to get me numb. I’ve also woken up during every surgery I’ve had where I was supposed to be knocked out (including two endoscopies–it’s no fun waking up with a giant tube down your throat), despite pre-warning the doctors that I’d need to be monitored closely and likely given more than the normal dosage. *sigh* They don’t listen…

And just to be clear: I am not against the use of painkillers – I think they can help people. In my case, sadly, they made things worse.

As a 5yr old child I would faint from mild pain, eg: my brother trod on my toe. Again as a teenager I would faint first day of my menstrual cycle due to pain with the added bonus of migraine. As a child the dental anaesthesia would not kick in till I had left the dentist, and this is still the case If the dentist didn’t wait for the numbness to kick in. A colonoscopy was interrupted as I kept waking up from the procedure, and I was not on any opiod painkillers at the time.

I suggest you got better as a result of strengthening muscle exercises and not because you discontinued opiod painkillers. As well most of the painkillers prescribed are NOT opiod, but can give equivalent pain relief eg: Tramadol, Digesic