Mild Eds?

[firewatcher]

Since finding you all, I have found more questions than answers, so here goes...

Can you have a mild hypermobility? Like weak, easily sprained ankles and large joint hyperflexibility? My shoulder is slightly out of joint every morning when I wake up (depending on which side I sleep on, and it pops back in once I raise my arm) and I can go into a full split without warming up at any point in the day (was great for karate!) My joints don't hyperextend, but the range of motion exceeds most "normal" people. Am I simply blessed with flexibility? Or is this something that I need to bring up to a doctor? My chiropractor also says that my skull does not sit straight on my spine and that my atlas bone is 20mm higher on one side than the other

I don't want to fish for symptoms, but I don't want to miss anything either.

Just wondering.

Jennifer

[mkoven]

Yes. I"m less bendy than many, but am loose-jointed enough to get injured very easily, and to have joints pop and slosh all the time.

[Katja]

some doctors consider Joint Hypermobility Syndrome to be a mild version of EDS. these are the diagnostic criteria for it:

http://www.hypermobility.org/diagnosis.php

[Csmith3]

Hello Jennifer

I think EDS is measured in terms of how extensive it is (i.e. how many parts of the body are affected), rather than overall mild/medium/severe. I would get it checked out if I was you as it can go on to explain a variety of symptoms, which at least brings some satisfaction, if not direct improvement! It is also worth getting checked out in case you are in the small minority that have the vascular type, which would need monitoring.

Catherine

[firewatcher]

Hello Jennifer

I think EDS is measured in terms of how extensive it is (i.e. how many parts of the body are affected), rather than overall mild/medium/severe. I would get it checked out if I was you as it can go on to explain a variety of symptoms, which at least brings some satisfaction, if not direct improvement! It is also worth getting checked out in case you are in the small minority that have the vascular type, which would need monitoring.

Catherine

What kind of doctor do you see for that?

[Csmith3]

I saw a rheumatologist for the EDS diagnosis which took one consultation. He specialises in joint hypermobility, EDS and similar. He came recommended by the ANS doctor.

I am lucky in that I have few day to day problems with EDS so I haven't needed to go back to see the rheumatologist for any treatment or pain management advice. But it's nice to know there is someone I can see if problems start arising. It was also useful to have an hour or so's chat to understand why I get the joint problems, skin easily cuts etc. so I know what is normal for me and what would need further advice or treatment.

There is a joint hypermobility association in the UK that has a web-site with forums like this. It is clear from that site which are the two main places to be seen by an appropriate EDS specialist in the UK. It is also clear that some rheumatologists outside these two centres aren't that familiar with EDS and people with quite severe problems have had poor consultations and been treated as malingerers. I appreciate you are in the US, but maybe the EDS US site would have some recommendations or suggestions so you see the right person.

Catherine

[Maxine]

I see a geneticist who specializes in connective tissue disease. Years ago my EDS would have been considered "mild", but had I known that I had it, I would have never had some of the jobs I had when I was younger that required physical strength, and I would have been more careful with other body mechanics. Now my spine is a train wreck, along with multiple other joints---especially shoulder blades. My EDS is severe, and I have to see an orthopedic surgeon and a GI doc along with my geneticist. I have appointments with a cardiologist to check my aorta also.

One important thing to have done is an echocardiogram, as vascular EDS can cause aorta to rupture, but it's also known that hypermobile EDS, and classical can have crossover with the vascular type------or have vascular involvement like I do.

It should be done by a cardiologist who is familiar with EDS so they know what to look for.

Many people with milder EDS function well, but I still think it's important to have a definate diagnosis to make sure you know what precautions you need to take to avoid injury to joints, ligaments, and possible vascular problems. Organs can be affected as well, and my intenstines are badly affected-----------but it's possible I have something else going on there also.

Take Care,

Maxine :0)

[MelissaCrystal]

I fit a lot of criteria for EDS except the skin one. I do have atrophic scars, but not stretchy skin. Does Joint Hypermobility Syndrome cause POTS?

[Katja]

yes, Joint Hypermobility Syndrome can cause POTS. Dr. Grubb mentions it in his 2006(?) "Concise guide" article. you can also take a look at this article: Gazit Y. et al. 2003. "Dysautonomia in the joint hypermobility syndrome." The American Journal of Medicine, 115 (1): 33-40.

you don't have to have stretchy skin to have hypermobile EDS, as far as I know. the skin is usually either normal, or only mildly hyperextensible in this type, so you probably shouldn't rule it out. this is mentioned in this article, for example: http://www.ncbi.nlm.nih.gov/bookshelf/br.f...e∂=eds3

[mkoven]

i didn't think of my skin as stretchy, till i compared it to a "normal." the skin on the inside of my forearm can be pulled away from the underlying tissue more than most people's. subtle but there. but i don't look like the extremes you find on the internet.

[Katja]

neither do I, for the most part. it's stretchy enough to gross out my family, though, particularly on my upper arm :-P.