When a person has Hypermobility Syndrome, their joints move beyond the normal range of motion. This increased flexibility is not welcome as it creates pain in the joints and makes the person prone to injury. With the state of constant inflammation in the joint, the person can also experience immune disorders as their immune system is constantly impaired by the process of fighting the inflammation. Joints are naturally limited in motion in order to prevent over extension that can strain, pull or tear muscles, ligaments or tendons.

Hypermobility Syndrome – A Case Study

Hi my name is Jayde Abbie Smith. –  My Facebook Profile: https://www.facebook.com/jayde.a.smith

Hypermobility Syndrome is best understood through following case studies. In this case, a young man is beset by pain and problems controlling his limbs and fingers. Diagnosis is relatively easy, but treatment is still difficult. Here is his story:

“I was diagnosed with hypermobility syndrome at 16, I am now 18 years old. I first knew something was wrong after I had started working. I was working for about a year but the pain started to become so great on a daily basis that I just couldn’t do more than a few hours at a time. Then I would have to stop what I was doing because of the pain and rest, by the next day I was ready to try again – but the same pain always returned.

In November of my 17^th year, I had an accident where I got pushed down some stairs. That’s when things really started to go downhill. It’s like my body just can’t recover anymore no matter how much I rest. My doctors also are thinking I have postural tachycardia syndrome (POTS). That is when my heart will just start beating really fast because it can’t get blood to my head. The problem with that is now it puts me at a fall risk, and if I fall, the Hypermobility Syndrome makes sure I can’t get up and the pain is unbearable.

My doctor sent me to a physiotherapist, but they don’t know what to do with me. The physiotherapist wants me to see a specialist, but no one is quite sure who that would be. My doctor basically told me to “suck it up” and doesn’t want to write any more sick notes for me to miss work. The problem is that on most days I can’t even feed myself because I can’t control my hands enough to pick up a knife and fork. I am not sure why they can’t measure the pain I am in, or why they can’t do something to help me. I am doing everything I can. I enrolled in a college course and am trying to get my license, but I need help with this.”

What causes Hypermobility Syndrome?

Hypermobility is an inherited condition. It is thought that the gene associated with the production of collagen does not work properly. While most people think of collagen as a skin and nail substance, it is also what the joints use to adhere to the tendons and stay together. Without collagen, there is little control over the range of motion of the joint. Hypermobility Syndrome is most often seen in those with Down’s Syndrome or Marfan Syndrome, where the connective tissue in the body is not present or breaks down too easily.

How is Hypermobility Syndrome diagnosed?

This syndrome is diagnosed by a visual inspection of the joints and then a range of motion test. If the joint moves out of the expected range of motion, and there is no other potential cause (such as dislocation), then a diagnosis is made. Hypermobility Syndrome is inherited, so it can not be prevented.

What is the prognosis?

The prognosis for this syndrome is positive. Many people who have it experience no difficulties or pain from it. Some people do have pain and difficulty moving. The standard treatment is to prescribe pain relieving medication and anti-inflammatories. Proper daily exercise is considered a must for this condition. The exercises performed must be done with respect to controlling the motion of the joint, but the goal is to build up muscle on all sides of the joint to make that control automatic. The long term outlook may see an increase in arthritis and loss of collagen in the joints, but that generally does not affect the person until much later in life.

Why do some people have more pain than others?

One of the most difficult things to accept with this syndrome is that some people will experience more pain than others with it. This is partially about the level of pain tolerance that a person has, but there is also much more involved. As the hypermobility creates different strains and pressures on the joints it can also cause inflammation. Depending on how inflamed the person’s joints become the pain can increase – or decrease.

Inflammation can press on the surrounding nerves and increase pain, and it may also press so much that it causes the nerve bundle to shut down. This creates numbness in the area. That numbness may not be better than having pain as you then become more prone to injury.

Why diet and exercise are so important with Hypermobility Syndrome

Both diet and exercise are very important in treating Hypermobility Syndrome and relieving pain. Science now knows that there are many foods that can affect pain levels in the body, and more specifically the joints. You even have to become mindful of the temperature you heat your food to when cooking. The exercise regimen should be daily. The goal is to strengthen the muscles and tendons to hold control over the joint. Without strength building exercise the person’s pain levels and joint control will not improve.

What else should you know about Hypermobility Syndrome?

In the case study, doctors also suspect that this person has POTS. This randomly elevated heart rate can make the exercise aspect of treating Hypermobility Syndrome difficult – but not impossible. By monitoring the heart and following the standard treatment for POTS, you can also work to relieve the pain of hypermobility. The good news is that POTS is something that most people grow out of, it is not considered a life-long, or life threatening condition.

Many of you are probably like me, in that to look at you, there is nothing obvious that jumps out and says you’re in pain – no physical deformity, no cast, no stitches.

My pain story goes back many years. I remember suffering widespread body pain from the age of 15 on – I’m 51 now.

Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty rough lifestyle (drinking, drugs, hitchhiking around the country, doing crazy things…but that’s another post!) and it just wasn’t at the forefront of my mind.

I finally settled down, had kids, entered and left a couple of relationships, and then met my (now) wonderful husband.

I’ve also had my share of surgeries over my life, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my L. ovary, gallbladder and R. ovary – all happening within a 6 month time frame.

Talk about body trauma!  My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.

Well, I thought that would be end of all the issues, but no…the ongoing pelvic pain persisted, got worse and became worse than the Fibromyalgia and Myofascial pain. In addition to all that, I also have IBS, Painful Bladder Syndrome, Sjogren’s Syndrome and Reynauds Syndrome.

My family doctor is wonderful and has tried many things, but like most of you, it seemed that narcotics were going to be the answer for the longterm fix.

I was referred and accepted into outpatient treatment at the Chronic Pain Centre in my city (I lived in Calgary, AB Canada at the time and am now living in Victoria, BC, Canada) and there, I worked with a team including doctors, physiotherapists, a psychologist, and others.

We tried several type of injections for the trigger points, including Botox, but nothing helped.

I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm.

The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.

As I mentioned, I’m now living in Victoria, BC and I’ve started seeing a Naturopathic Dr. My diet and nutrition have been shot to hell, and for the last couple of years, all I’ve been able to eat for the most part is yogurt, granola, cheese, crackers and ice cream.

Nothing else had tasted good and I’m extremely sensitive to texture, taste and smell. My body is hypersensitive to many things including the feeling of labels in clothing, loud noise…you name it.

I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!

I attended group classes at the clinic for relaxation, diet, exercise, etc. and it does help to have other ways to focus and cope. It also helps to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel.

Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me. I sincerely sympathize with each of you here, Pamela in Victoria, BC