Painful Joints? You May Have A Hypermobility Condition. Here's What You Need To Know

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If you frequently experience pain in your joints, you may have joint hypermobility syndrome (JHS) and/or Ehlers-Danlos syndrome- hypermobility type (EDS-HM). In fact, the most frequent cause of complaints in rheumatological clinics is musculo-skeletal pain due to joint hypermobility syndrome. Ehlers-danlos syndrome is often used interchangeably with joint hypermobility syndrome, but it's important to determine which type you have so you can get the best treatment and pain management possible. Here's what you need to know. 

Is there a difference between JHS and EDS-HM? 

Unfortunately, there is no universal agreement  within the medical field as to when to diagnose JHS vs. EDS-HM. Some believe that they are the same thing. Ehlers-Danlos syndrome is a genetic mutation that causes collagen in cells to be fragile. Collagen is essentially the glue that binds the cells throughout your body. Collagen is what gives your joints and skin the ability to bounce back, so to speak. Because of the fragile collagen, people with EDS-HM tend to dislocate their joints easily and their skin may stretch abnormally. T

Therefore, many doctors will diagnose someone with joint hypermobility syndrome when their joints are hypermobile but they do not experience frequent joint dislocations and their skin doesn't stretch abnormally. To determine the extent of hypermobility, doctors use the Brighton score, which incorporates the well-known Beighton score. A geneticist can diagnose these conditions. 

Why is it important to get the right diagnosis? 

The reason it is important to get the proper diagnosis is because EDS can affect various parts of the body, not just your joints. For example, your eyes are actually 80% collagen, which means you are likely to have eye and vision problems if you have EDS, such as macular degeneration and detached retinas. 

Fragile collagen can also cause Chiari malformation, which occurs when the cerebellar tonsils (at the base of the brain) extend down to far into the opening for the spinal cord, which can disrupt the flow of cerebrospinal fluid and/or put pressure on the brain stem. This condition causes headaches that can occur during valsalva maneuvers, such as coughing and sneezing, and it can also cause syringomyelia, which is when pockets of cerebrospinal fluid form inside the spinal cord. Obviously, it can be very concerning any time the spinal cord and brain stem are affected. 

What should you do first if you think you may have EDS? 

The first thing to do is to sit down and write all of your symptoms, no matter what they are. Before, you may not have realized there may be a connection between things like eye problems, headaches, and your painful joints. Don't dismiss any symptom as you make your list. Also, beside each symptom, write down what methods you've used to try to deal with them, particularly medication, and whether those methods have worked or not.

Once you have your list as thorough as possible, take it to your primary care physician for their evaluation so they can refer you to the appropriate specialists. Take your list with you to each medical appointment. That way, you can show the list to your medical team so they can evaluate you and begin your pain management and treatments based on what you have already tried previously. 

If you are diagnosed with EDS-HM or any other type of EDS, you can expect to be referred to a number of medical professionals, including pain management. It's important to keep everyone in your medical team abreast of any changes in your diagnosis, prognosis, and treatment. Each referral should send paperwork to your primary care physician who will coordinate your treatments and consultations. Click on this link for more advice.