Question 1

how do you get eds?

Accepted Answer

Genetic: Ehlers-danlos syndrome is genetic, and is tremendously diverse -- from mere double-jointedness to life-threatening fragile vessels.

Question 2

how would i get diagnoses for eds?

Accepted Answer

Ehlers Danlos? : If you are referring to Ehlers-Danlos, your doctor will do a physical exam of your skin and joints. She may also do a skin biopsy looking for abnormal collagen.

Question 3

my husband has eds hypermobility can he get disabled?

Accepted Answer

Not necessarily: Good teaching in joint protection will prevent disability.  Fibromyalgia frequently accompanies people with hypermobility without apparent arthritis.  I encourage your husband to take care of himself so that he does not become disabled.  Living off of disability is a meager existence.

Question 4

can any doctors or people who've been treated for eds please tell me how to get diagnosis?

Accepted Answer

Clinical criteria: It is usually a clinical diagnosis made using a set of clinical criteria; however, there are some genetic tests that can look for some variants of eds.

Question 5

i fit all of the criteria for hypermobile eds but to date only dx widespread oa and fms. would it be worthwhile trying to get an official dx of eds?

Accepted Answer

Hard to know: Here's a good place to start: http://www.ehlersdanlosnetwork.org/index.html
There may be advice about possible research trials or treatment possibilities - but it's a mystery in many ways. There's a video you can link to from the site. Best wishes!

Question 6

if a physio therapist thinks i have eds, who should i get in contact with when family dr say can only find out with a biopsy and won't do anything?

Accepted Answer

Clinical Findings: The diagnosis of ehler danlos syndrome is based on the clinical symptoms and family history and for some types of eds a skin biopsy is needed to help with the diagnosis.
If you have clinical symptoms with or without family history, and you need a skin biopsy, it has to be ordered by your family doctor.If you are not happy with his opinion you can see another md or a rheumatologist for second opinion.

Question 7

what is the mechanism by which local anesthesia is transient or ineffective in eds/hypermobility patients? where can i get more information?

Accepted Answer

Not true: There is no any issues with response to local anesthesia is association with eds.

Question 8

i have eds hypermobility no on can help much. i get severe neck and head pain, what can i do for relief? massage helps, holding head takes pressure of

Accepted Answer

Ergonomics: It sounds like a tough problem and it sounds like you've already looked into it some.

With EDS hypermobility, you should pay extra attention to ergonomics when you're working. For example no staring down at laptops (you should be looking straight ahead so as not to put stress on your neck).

Massage is a good idea.

Also seeing a physical therapist might help.

Question 9

can a person have hypotonia and eds at the same time? i know i have hypotonia but i can also get joints out of place without trying, is that from it ?

Accepted Answer

Unlikely: It is possible but unlikely. Check with a rheumatologist or a genecist for a better answer.

Question 10

i have suspected eds hyper type (no uk doctor available to diagnose via nhs) and i'm wondering if it could be linked to the pain i get with that? it's worse at night i can't sleep for feeling that there are insects crawling over me in my bed, tickling and

Accepted Answer

Not the explanation: Ehlers-Danlos is not worth diagnosing with special labs as you're not going to do anything different given the data. Vascular Ehlers-Danlos is diagnosable on history and physical; the others aren't life-shorteners and it's up to you to figure whether they limit what you can do. You also describe "formication", the feeling of bugs; it has a variety of causes you can read about, EDS is not one.

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Doctor answers about:

How do you get eds

A member asked:

How do you get eds?

A member asked:

How would i get diagnoses for eds?

A member asked:

My husband has eds hypermobility can he get disabled?

A member asked:

Can any doctors or people who've been treated for eds please tell me how to get diagnosis?

A member asked:

I fit all of the criteria for hypermobile eds but to date only dx widespread oa and fms. would it be worthwhile trying to get an official dx of eds?

A member asked:

If a physio therapist thinks i have eds, who should i get in contact with when family dr say can only find out with a biopsy and won't do anything?

A member asked:

What is the mechanism by which local anesthesia is transient or ineffective in eds/hypermobility patients? where can i get more information?

A member asked:

I have eds hypermobility no on can help much. i get severe neck and head pain, what can i do for relief? massage helps, holding head takes pressure of

A member asked:

Can a person have hypotonia and eds at the same time? i know i have hypotonia but i can also get joints out of place without trying, is that from it ?

A member asked:

I have suspected eds hyper type (no uk doctor available to diagnose via nhs) and i'm wondering if it could be linked to the pain i get with that? it's worse at night i can't sleep for feeling that there are insects crawling over me in my bed, tickling and

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