Discussions that mention lidoderm

Pain Management board


Hi There and welcome to the boards.

I can totally relate because I too have EDS. I have type 3 but it is believed that I am crosstyped with 1. New studies suggest that individuals can have various types at one time which makes things all the more difficult.

I was not diagnosed with EDS until I was 30, I am now 41. I constantly sublex and dislocate. My hip was actually born dislocated and an experimental surgery was done to put it back into place when I was 8. My biggest problem right now is that my jaw dislocates on a regular basis. All I need to do is chew the wrong thing, like meat, or yawn and it dislocates. It's no fun putting back into place.

The biggest problem with EDS is that many doctors are not aware of it even though millions of individuals suffer from it. Because it is genetic the numbers are even higher. Doctors simply do not diagnose it properly. I do all I can to educate them.

I started on mild pain medication at age 18. If you read my post on changing medications you'll see my history.

What I would suggest is that you contact the National Foundation in California and find a local chapter in their area and see if there are any doctors who specialize in EDS and Pain Management. You might get lucky and find someone who does understand. Seeing an Orthopeadic surgeon, in my opinion, isn't your better option because they can only offer you stop gap operations that can end up causing you more problems in the long run. Doctors such as these only treat the immediate problem but not the disease and the pain that it causes itself. Additionally an Ortho is highly unlikey to offer you any type of pain relief, they do one thing and that's operate. If you are not a surgical candidate and you are braced to the hilt there's noting more they can do.
I tried that route, you end up nowhere.

Just because you are young doesn't mean you do not have the right to be treated when you have a condition that will never be cured nor never get better. Surgical interventions are rarely the answer because it won't fix your collagen or the fact that you have a disease not an immediate need. Many of us who suffer from EDS have all been through what you are going through. It's often difficult for someone who doesn't have EDS to really comprehend the complexity of the disorder, especially doctors.

Like you all of my joints are bone on bone. Becaue EDS is collagen based our cartilage to begin with is not normal, it is often a mush like substance. It breaks down rapidly over the years. Things like steriodal injections make the joints deteriorate at a much faster rate than normal.

Unfortuntely for both you and I and the millions of individuals who suffer from EDS our condition will never get better, it will only get worse over time. It's not something that ever goes into "remission" and this is a really hard concept for many doctors to grasp.

Before I started seeing a PM, because back in my 20's and even early 30's they didn't exist or weren't in my area, I had a great Rhurmatologist who was very much in tune to EDS (even though we didn't know I had it) and pain in general. He helped quite a bit in managing my pain. It was only when I started on Percocet that he wanted me to start seeing a PM who was new in our area. Because of the Laws in Ohio he did not feel comfortable in prescribing Percocet on a monthly basis.

Things that I have found benificial with the EDS is aquatic therapy, TENs unit and Lidoderm patches. Of course wearing your braces and knowing your limits is also extremely important. Prevention for us is the big key.

I do think that joining an EDS support group would prove to be very benificial. Chances are there is one in your area, you'll have to check with the National Chapter but there are new groups popping up all the time because more and more individuals are finally being properly diagnosed.

In regards to Fibbles comment. I would doubt you have EDS, it sounds like you have Brittle Bone Syndrome and maybe Hypermobility Sydrome perhaps. EDS does not actually effect the bones, it effects the cartilage and collagen. Bone deformaties are not a sign of EDS. The basic characteristics of EDS are loose fragile skin that bruises and or tears easily, joints sublex and dislocate easily, many suffer from TMJ Dysfunction as well as dental problems in general. Your best bet is to seek out a qualifed Geneticist. If you feel you have EDS get tested for it. Unfortunately there's no cure or anything that can be done other than prevention.

Depending on the type you have it can and does affect internal organs. Types 1 and 2 can be fatal.
The only way to really be diagnosed is with a skin biopsy. Unfortunately type 3 can not be found via a biopsy it is diagnosed via ruling everything else out and based on the symptoms, particularly the loose joints.

Any doctor who tells you EDS does not cause pain does not know anything about the condition. Type 3 is the most painful and pain is one of it's primary symptoms.

Good luck to you. If there's anything I can do for you I'd be happy to help!

Barbie