Information for Patients

People who are suspected to have or have been diagnosed with Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder usually have a lot of questions surrounding the diagnosis. Even after the diagnosis questions come up as how you feel changes from day to day. Here is a list of questions I normally answer as a physical therapist.  

What is Ehlers Danlos Syndrome?

EDS is an inherited connective tissue disorder where collagen is produced incorrectly. The word collagen actually comes from a Greek word meaning "glue," which is why modified collagen causes looseness throughout the body. Ligaments, tendons, bones, organs, blood vessels and skin all can be affected causing a wide range of possible symptoms. 

I'm not sure if this is related to EDS...

  • Muscle tightness - Yes

  • Chronic fatigue - yup

  • Vertigo/dizziness - you betcha

  • Poor balance - absolutely

  • Anxiety/depression- sure

  • Stomach pain with eating - this too

  • Pelvic floor issues - affirmative

  • Easy bruising - of course

  • Difficulty with pain meds and anesthesia - definitely

  • Issues with sleeping - yep

  • Constipation/IBS - true

 

So many symptoms can be caused or related to EDS/HSD. Instead of being labeled with several diagnoses, I tell patients that EDS/HSD is the umbrella diagnosis that causes these symptoms. EDS/HSD connects the dots of many patients' medical history. 
 

How can I be hypermobile when my muscles are tight?

You can be hypermobile at your joints and have tight muscles. What happens is that the muscles tend to tighten up to compensate for the increased movement in the nearby joints. This muscle tightness is perpetuated day after day causing an increasing amount of tightness. Muscles are also tight to compensate for lazy muscles. It's like a group project where 1 person doesn't do their job so you have to do more work. Your body is a giant group project. Certain muscles get overworked and thus tighten up and cause pain while other muscles are on vacation.  

Why do I feel worse around the time of my period?

Hormones play a big factor in hypermobility. The week prior and during your period can cause even more laxity throughout your joints which will bring more pain and possibility for dislocations/subluxations. In general, EDS symptoms increase around times of hormones changes such as puberty, pregnancy and early 20s. Hypermobility is predominantly in females and the males that do present with it have lesser symptoms. The graph below depicts this effect as it shows increased amount of ACL ruptures in females when estrogen is higher. 

I think I have EDS or HSD, how do I get an official diagnosis?

Unfortunately there are few doctors that will diagnosis EDS/HSD anymore. The best chance of getting an official diagnosis is finding a doctor on the EDS provider referral site. The only reason in my professional opinion to get an official diagnosis is only needed for school or work accommodations. Healthcare professionals should treat you for how you present instead of the diagnosis. Also since there are not a lot of health professionals that know about EDS/HSD, you will have to be your advocate to get appropriate care. (See the information for others page)

Hormones and ACL rupture.JPG

Reference: Front. Physiol., 15 January 2019 | https://doi.org/10.3389/fphys.2018.01834

Why do I not feel the right muscle working?

 

This is very common with hypermobility. When the brain needs to perform an action, it wants to do the path of least resistance. The brain looks to activate muscles that are ready to work and can perceive muscle tightness as "good to go." Therefore it activates a tight muscle because it is easier to initiate the contraction instead of activating the correct muscle. This overworks the tight muscle and causes more tightness and pain. The correct muscle will not be activated without intervention. Example below: 

      Action: Reaching up overhead

How can I be hypermobile but not look like dancers or gymnasts?

People with hypermobility present on a spectrum. Even within the hEDS diagnosis, patients present very differently. Previous surgeries, comorbidities and age also affect how hypermobile you present. Surgeries especially fusions cause a decrease in mobility as well as scar tissue from non-fusion surgeries. Other diagnoses can decrease the presentation of hypermobility such as with arthritis. As we age, our bodies get stiffer which also decreases joint laxity. 

Why do I keep dislocating, spraining or subluxing my joints?

When tendons and ligaments are looser it increases the likelihood of joints being pulled (sprained), subluxing (partially coming out of place), and dislocating (fully coming out of place). When this occurs it causes the tendons and ligaments to be stretched and thus more instability in the joint, which in turn increases the chance of more sprains, subluxations or dislocations. 

Why does massage hurt me or does not make me feel better?

Muscle tightness can be caused for 2 reasons: muscle shortening from use/positions, or compensation for joints/muscles. If your muscles are tight after a long walk then massage may feel good. If your muscles are tight from just trying to exist and compensate, then massage takes away the only thing holding your body together. Without the compensatory muscle tightness, your body may feel more pain and instability, which may lead to a rebound effect making you feel tighter. There are ways to loosen this compensatory muscle tightness without pain. However, your body needs other muscles to activate first before it will allow the tight muscles to relax. 

 

BRAIN

UPPER TRAP

SHOULDER MUSCLES

Upper trap is tight because of shoulder instability. This is not the correct muscle

Shoulder muscles are the correct area to work and tend to be lazy, weak and more difficult to activate.