Jump to content

Ehlers-danlos


firewatcher
 Share

Recommended Posts

Ok, my brain has finally recovered from yesterday's infliction of Pilates. Part of our session is stretching, during which the instructor says to me: "I don't need to help you, I can't even feel you stretch (aka there is no stopping point of tension.) I asked her if that was NOT normal, she said "NO, that's not normal. I have never seen anyone as flexible as you." ;) Dang. Is this "normal" for EDS? I've always been very flexible, never had joints that go backwards, never a true dislocation. I'm just really stretchy.

WHY would I NEED to know if I had EDS? What impact would it have on my treatment? What could I do about it anyway?

I am tired of being poked, prodded, palpitated... I don't want to see another doctor.

Link to comment
Share on other sites

  • Replies 59
  • Created
  • Last Reply

Top Posters In This Topic

It does change your treatment plan because some of the mechanisms and causes of blood pooling etc is different than other causes of POTS (because it's a tissue problem rather than just a Dysautonomia problem). There are certain meds that work better for EDS patients on average and it's also more common and understood by more doctors than POTS alone, supposedly. My doc said there is more research on EDS than POTS alone too, so that means there may be more research done in the future on EDS since the starting point is older and there are more resources out there for docs to conduct more studies. I don't know, I think it's worth knowing the cause, because it's also recognized by the government and doctors and hospitals much more than POTS alone. My doc says it's looking so far like 50% of EDS patients have POTS so EDS specialists may be better doctors to go to than the rare cardiologist or neurologist that knows how to treat POTS.

Link to comment
Share on other sites

are you hypermobile (http://www.hypermobility.org/beighton.php), or just very flexible? If you don't have an increased range of motion in several joints, as far as I know, it's probably not EDS, unless you have other symptoms, as well. I score about a 4-5 on the Beighton scale, though I have other joints that are hypermobile (ankles, shoulders). I have other symptoms of EDS, as well, and some history of joint/EDS-like problems in my family.

knowing I may have EDS mostly matters to me because I do have problems with my joints - recurrent injuries, subluxations, and so forth - though my symptoms are actually fairly mild, and don't cause me too much trouble, as long as I stay away from most sports ;). my neurologist did seem to think that it was relevant, however, to figuring out what type of treatment may work better, in my case.

Link to comment
Share on other sites

My doc says that other joints that aren't on the test are just as important for diagnosing EDS---some people don't pass that test, or barely do, but you have to get evaluated by an expert and they often use hips and shoulders because those are the problem areas for EDS patients. I've dislocated both my hips before, and they're extremely hypermobile in odd ways (can't do the splits but they rotate outward and towards my chest all the way). My doc actually doesn't like that test, says it makes too many people think they don't have EDS---same with the stretchy skin criteria, which not all EDS people have.

My ankles are floppy and weak too. Keep in mind that the knees and stuff don't always have to be hypermobile---when I've walked a lot or gone up stairs, that's when my knees threaten to hyperextend, which is painful. They're pretty unstable when that happens. My doc says that's not normal, and common to EDS. So you don't need to be a gymnast to have EDS, that's for sure!

Link to comment
Share on other sites

it may be worth looking into, in that case. I was tentatively diagnosed with EDS III last month, by a geneticist who specializes in connective tissue disorders. I mentioned to the neurologist who diagnosed me, during my first appointment with him, that I was somewhat hypermobile - the fact that I could easily bend both thumbs back, to lay completely flat against my forearms, seemed enough to convince him ;). Since I also had a history of joint problems, and somewhat stretchy skin, he asked me to get it checked out.

this seems to be a fairly good article, describing what may warrant evaluation for EDS:

http://www.ncbi.nlm.nih.gov/bookshelf/br.f...e∂=eds3

Link to comment
Share on other sites

It's a good idea to keep an eye on other potential problems with tissue fragility-- joints, organs, and vessels. I also find it helpful to have a unifying diagnosis. I don't have a very high beighton score-- I'm worse on joints not shown-- like hips, shoulders, jaw, toes. and some joints that don't look too hypermobile are still pretty unstable. I have my aorta monitored regularly, as aneurysms are one of the riskier things with eds.

Link to comment
Share on other sites

theycheck range of motion in different directions. not sure what's normal, but you can google "normal range of motion" and you should see number of degrees for different directions, such as internal and external rotation, flexion, extension. I think, for example, it's unusual to have internal rotation of hips of more than 45 degrees.

Link to comment
Share on other sites

theycheck range of motion in different directions. not sure what's normal, but you can google "normal range of motion" and you should see number of degrees for different directions, such as internal and external rotation, flexion, extension. I think, for example, it's unusual to have internal rotation of hips of more than 45 degrees.

So if I can stand and turn both feet inward with heels and toes lining up and next to each other, that's too much? ;)

Link to comment
Share on other sites

I'm pretty sure I have EDS too. I've thought this for a while, but was in the same boat as firewatcher. I figured "what difference does it make." I had no idea it can mess with your insides (heart, hernias) and such too. I have a 9/9 score on the Beighton scale. I checked on the other normal ranges and I am over those too. I have other symptoms too... Yet another problem to bring up to the doc!! ;)

Hollie

Link to comment
Share on other sites

Normal range of motion in degrees:

* Hip flexion (bending) 0-125

>>>Mine is almost 180--me on my back, one leg straight on floor, the other has the ball of my foot touching the ground above my head. ;)

* Hip extension (straightening) 115-0

* Hip hyperextension (straightening beyond normal range) 0-15

* Hip abduction (move away from central axis of body) 0-45

>>Mine is close to 60-eek!

* Hip adduction (move towards central axis of body) 45-0

* Hip lateral rotation (rotation away from center of body) 0-45

* Hip medial rotation (rotation towards center of body) 0-45

Not sure about the others, I swear I move like Gumby! My shoulders do the same.

Hey could this be why my 9 pounder could turn breach and then back again a week before his birth? It was like alien....gross!

Link to comment
Share on other sites

I definitely think it'll be worth it to know, since also 50% of your offspring will have it activated, and all will carry it! Also, I was told I'll need regular cardiology checkups to make sure my heart tissues are healthy, since a lot of EDS types (and even the hypermobility type) can have heart complications like Mitral Valve Prolapse.

Link to comment
Share on other sites

Yeah I wouldn't recommend extreme yoga, that's for sure. Gentle, normal stretching is good for your muscles, but don't test your limits anymore if you have EDS.

Link to comment
Share on other sites

can I ask, what kind of specialist diagnoses you with EDS? Rheumatologist? Is it all based on clinical signs, or do they take any biopsy or blood tests of some kind? Would an echo of my heart and aorta who if I had the vascular type? I am very flexible in some joints and bruise pretty easily, but my skin is not stretchy at all, and I dont have many of the other symptoms...Im getting a little sacared, especially because of the sudden rupture thing that can happen in one of the types..

Villen:)

Link to comment
Share on other sites

www.ednf.org is a great resource with all kinds of up-to-date info. My sense is that not many doctors are good at diagnosis. In my limited experience, it is geneticists, and sports medicine that have been the most helpful to me. (I saw one theumatologist who was not helpful. I don't know that he's ever seen a case before. and since I didn't look like the pictures in his textbook, he told me I was fine. but he did send me to a geneticist, who knew how to check for a variety of subtle signs. still, she was not terrible up-to-date.) I'm going to see Dr. Francomano, one of the top geneticists of heritable connective tissue disorders, in a month. there are tests to checkl for the vascular type (the most dangerous), and a test that is sometimes positive for classical. But very often, it is a clinical diagnosis. and there is some crossover of symptoms across types. I wish I could recommend more-- I see you are in Norway, and I have no clue who the appropriate doctors would be there. I think it is useful to have a diagnosis, so you can take proper precautions.

I still have the occasional doc who disbelieves the diagnosis, and then says, "but have you ever had a dislocation?" when I say that my hips and pelvis come out of joint all day everyday, they usually stop disbelieving me. that is NOT normal. but my beighton score is not impressive--because those are not my worst joints.

Link to comment
Share on other sites

I saw Dr Nazli last year as part of the NIH study on EDS.

She carefully looked at all of my joints. I did not realize until then that I likely had multiple dislocations and even more subluxes (partial or incomplete dislocations)

In fact, I was told my shoulders are always in a subluxed position.

I think when you have EDS, dislocations and subluxes are not always so noticeable.

If anyone suspects they have EDS and you can get to see Dr Nazli or Dr Franomano, it might be extremely beneficial for you as they may be able to explain much more about your health issues than just being flexible.

Link to comment
Share on other sites

I've been wondering about this for a while but Im doubtful. I used to be pretty flexible in high school, especially my hips, ankles, thumbs and pretty much every where else. I was involved in cheerleading and a number of other sports including track and field where I did long jump and high jump. In cheerleading and track things came easy to me because I was so flexible, but now Im really stiff all the time and have bad sciatica so I can hardly bend over at all. However some of my joints like my ankles and thumbs are still pretty flexible. Im doubtfull that I have this, but would it be worth bringing up with my doctor? or should I just let it go?

Candace

Link to comment
Share on other sites

I am planning to get evaluated. Dr. Francomano is nearby for one. Secondly, both my sister and I have POTS so it seems we have something heritable. We also both had placental abruptions, which are rare, especially severe abruption, which occurs 1/750 pregnancies. Neither one of us is particularly flexible--we have both had TMJ, but that is not uncommon in general. Anyway, I feel knowing one way or the other will give me peace of mind.

Link to comment
Share on other sites

Why would you need to know?

Im guessing so that when they have a better understanding of why people with EDS type III tend to also suffer from POTS they may be able to target better treatments I guess.

Currently there is still confusion on exactly why EDS type III causes secondary POTS. Some doctors have found reduced stomach venous pooling rather than the other as expected.

Link to comment
Share on other sites

I'm 6/9 on the scale here complete with stretchy skin. I was wondering if it was worth seeing an EDS specialist at all? Seems my POTS Dr is walking in somewhat unknown territory. I don't think there's really any cure though is there apart from taking my POTS meds? Just seems more symptoms to be aware of. Anyone seeing an EDS specialist in Melbourne Australia?

It seems my son doesn't have it have tried to bend his fingers back and he screams. By his age thats how I used to win fights with my sisters and anyone else who tried :(

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share


×
×
  • Create New...