Lyme and EDS (Ehlers Danlos Syndrome)

Sean - so your joints weren't hyper mobile when you were younger - prelyme

I had looked into EDS when my son was younger because his elbow and knees had some hyper mobility . And he was weaker than he should be.

But he didn't have pain.


But, he ended up having celiac disease...and guess what? He's strong now and no hyper mobility anymore.

So if yiu never had it as a child...and now you do...something has caused it IMO.

Lyme can affect any part of our body...

HI-
I am hypermobile and as far as I know (and I have read a bunch) Ehlers Danlos is not something that can be "activated". Are you sure you are not thinking of EBV?
ED is genetic. Not saying that Borrelia will or cannot trigger epigenetic factors. But it is most famous for migrating joint pain.

Oh- one other thing. I am not scared about this but I am going to investigate.
ED can lead to overly elastic heart valves. This is not a good thing.
AND I recently got into physical therapy because as I age my "structural issues" from the hyper mobility have led to some muscle groups being weak and this has led to some pain, so I have to strengthen selectively and with a knowledgeable physical therapist. Wish I'd known this years ago.

I was diagnosed w/ EDS as a kid. As far as I know it is a congenital disease- I don't think it's something Lyme can activate. But I do think if you had a mild case of hyper mobile type EDS that Lyme could make the symptoms seem much worse!

The main reason it took me SO long to get a doctor who would order me a Lyme test is that so many Lyme symptoms could be 'explained' by my EDS.

As far as worrying about the type that can effect blood vessels & heart, like Girlie said, it is very rare, and also not usually associated with the classic hypermobility types.

If you wanted to rule it out, there is some kind of test they can do to check your heart, but I don't know what it's called. I had it when I was 17 and everything was fine so I know I don't have that type.

As far as the pain goes, I too am hoping the pain that I thought was 'just' EDS pain & permanently a part of my life will at least ease up some once I've dealt with Lyme & co.. one can only hope!

I think in your case , since the pain began after you got Lyme,Girlie is right & the pain is probably related to the Lyme & will go once you've effectively treated it.

As far as the getting into PT for strengthening muscles etc... super important! That was the biggest & most life changing part of learning to live with EDS for me. I have been doing PT eaither at home or at the y or at a professional PT place everyday since I was 12.

Even now when Lyme keeps me pretty imobile - I still do isometrics & other gentle exercises to keep things from getting too loose & causing problems!

Sean.scott256 said...
Thanks for the info everyone! I hope it's not something I have but I'll be seeing a EDS doc next year. If anyone else has any insight or experience with EDS/lyme I would love to hear from you.

But you have had the flexible joints since before LD?

EDS can just be that - hypermobility - don't think it has to
come with pain. I knew someone who had that - and it never bothered or hindered him

The onset of pain is most likely Lyme.

The person I know who was diagnosed with EDS did not have pain.
He was diagnosed based on his flexible joints as the main symptom. I think he also had the 'soft' skin...sorry I can't remember. But, definitely no pain.

When I was looking into whether my son had EDS - he also never had pain.. but that wasn't even a factor at the time.

There are many types of EDS and various symptoms.

If your pain came on since Lyme disease - then it's likely from LD.

What Im trying to say - is maybe you've had EDS all along but the pain is from Lyme. Muscle and joint pain is very very common with LD patients.

If I were you - I would focus on Lyme treatment and try not to worry at this point whether the joint pain is from EDS or Lyme. If it is from EDS - there isn't any treatment anyway, right?

on the topic of EDS and lyme

i see quite a large number of people get diagnosed with this - based on symptoms- only after a Lyme or bart diagnosis ( quite a lot of mentions of this seem to come up on facebook bartonella groups also - bart and lyme often travel together so it could be lyme causing it - or possibly bartonella does too).

and while everyone will be on a spectrum somewhere with respect to their flexibility and perhaps susceptibility to connective tissue disorders - my best guess is that this is just another case of mis-diagnosis in lyme disease.

lyme is well known to be "the great imitator" and can literally present with any symptom under the sun - and so what i think is likely happening is doctors are seeing a cluster of symptoms that fit with a known disorder (EDS) - and cannot explain it any other way - and hey presto - you now have EDS.

this is basically the same process that leads many of us to get diagnosed with CFS/ME or Fibromyalgia - or Rheumatoid Arthritis - or Psychiatric disorders - or any number of other diagnoses.

so unless you have confirmed EDS based on genetic tests - its much more likely you have EDS like symptoms driven by lyme and or bart or other co-infections and they will likely resolve when the infection is successfully treated

just my view based on everything i have read over the last 7 years dealing with this.