I know I said I wasn’t going to post today but after a minor disagreement with a family member this morning about attending a birthday party, I thought I would share some information on joint instability and what it’s like to live with chronic joint pain and dislocations.
This is one of the reasons that I started this blog – not only to vent about daily issues but also to promote awareness around this horrible disease.
Hypermobility Spectrum Disorders
As a small child, I was diagnosed with hypermobility joint syndrome. Or back then, they called it “knock knees.” It was through recent research and chatting with other “Zebras,” that I learned the this term is outdated. People who live with hypermobile joints are now diagnosed with Hypermobility Spectrum Disorders or Hypermobility Ehlers Danlos Syndrome (hEDS).
Here’s a picture of me in 1985 after corrective knee surgery to stabilize my right knee. It was such a traumatic experience that I’ve been afraid of surgeries since.
What is HSD?
Joint hypermobility in layman’s terms means having overly flexible or extendable joints. Some people may experience full dislocations – where the joint pops completely out of place. Or partial dislocations, also called subluxation of the joints. Others may experience locking or popping of the joints which is equally as painful, if not more frustating.
However, hypermobility doesn’t just affect the joints. There are many symptoms and comorbidities that come with hypermobile disorders. There are some lucky individuals that have minor or very few symptoms with HSD. And then there are others like me, who win the “joint lotto” and have a multitude of health problems.
Common symptoms of HSD
The more common symptoms that affect patients with HSD include the following (but not limited to):
- Chronic joint pain: and fatigue with early signs of osteoarthritis or osteoporosis and constant state of brain fog (memory loss, poor concentration or sleep)
- Trauma: frequent dislocations or subluxations – usually the knees or fingers and toes. Those who experience dislocations in more than one area of the body (fingers, knees, toes, shoulders) may also be diagnosed with hEDS.
- Physical markers: other musculoskeletal disorders can also be an indicator of hypermobile joints. These include flat feet, misaligned bones, mild scoliosis, and reduced bone mass that can result in compression fractures.
Common symptoms of hEDS
(Ehlers Danlos Syndrome)
The following is a list of symptoms that I’ve gathered from online support groups. It came as quite a shock as I suffer from quite a few of these issues myself. This list has been gathered from chatting with other hEDS patients and months of my own research.
- Stretchy or elastic skin that is slow to heal from cuts and bruises or skin that is prone to bruising without trauma.
- Velvety skin or translucent skin where veins are more visible.
- Small or non-existent earlobes that often result in chronic ear infections or popping and clicking of the ears
- Vitamin deficiencies or the body is unable to process vitamins naturally. More commonly iron (anemia), vitamin c and vitamin D3.
- Prone to bleeding conditions or after surgical procedures.
- POTS – a condition that causes lightheadedness when standing up or lying down, or just moving too quickly.
- IBS or chronic GI issues; bladder issues and loss of bladder control
- MCAS – mass cell activation that exasperates ear, nose and throat infections or activity. This includes frequent incidents with hives, edema, or low blood pressure. Asthma is not uncommon with hEDS.
- Organ prolapse – my uterus collapsed in 2013 and I can’t have children because of it. For others, they might lose a kidney or gallbladder – also true for me. I lost my gallbladder in 2000.
- Mental health and neuro: Anxiety and depression, chronic migraines and headaches
What causes hypermobility?
Joint hypermobility is often heredity and can run in the family. In my case, there is a family history of protein disorders and musculoskeletal disorders like scoliosis. But for me, I’m the only one who has hypermobile joints. So, what causes it?
Collagen is a protein that is found all over the body in skin and ligaments. These ligaments help to protect your joints from serious injuries or trauma. People with hypermobile joints tend to have weaker collagen or another more serious connective tissue disorder.
If the collagen is weaker than it should be, this can present problems later in life with dislocations and subluxations. Popping or clicking of joints are also common issues that result in chronic and widespread pain and fatigue.
Living with HSD or hEDS
Unfortunately, there is no cure for hypermobility or hEDS and the prognosis is often poor. There are some people that are lucky and have only a few symptoms or very minor subluxations that don’t cause pain. But for people like me that suffer from full dislocations – this can seriously impact daily life.
Many patients with hypermobility are often misdiagnosed with Fibromyalgia. This was the case for me back in 2012-2013 I was finally referred to a rheumatologist. The guy was nice enough to deal with. He spent some time with me to cover all my issues and even referred me to a pain clinic. I had some help. But the misdiagnosis led to what possibly might be a missed diagnosis of osteoporosis. It wasn’t until I switched family doctors that I finally got a referral to a geneticist.
For me, it’s a bit too late. I’m almost forty-five and have multiple compression fractures throughout my body, evidence of bone degeneration and bone growth on my knee and shoulder. It’s been a hard diagnosis to accept. But it also makes a lot of sense.
Diagnosis and treatment
For others who get a diagnosis early on, the many comorbidities of hEDS and HSD can be managed by seeing the right specialists. What really helps is to gather as much documentation as you can with x-ray results, lab results or chart notes with diagnoses. Other useful information might be family history, and a complete list of your symptoms, no matter how small they might be.
I should have changed doctors when I presented a carefully thought out list to my family doc of more than 15 years and she was insulted. “What am I going to do with this?” I thought that was a normal reaction. Turns out I was wrong – it was unprofessional of her. She also got mad when I did any research on my own. I should have sought out a second opinion long ago.
- Geneticist (diagnosis)
- Rheumatology (pain and joints issues)
- Neurology (migraines, headaches, neuro issues)
- Orthopedist (feet issues)
- Physio therapy or occupational therapist
- Family doctor (for referrals, medications,etc)
For treatment, that will depend on the severity of symptoms. For me, I’m in constant pain. There are varying levels of pain that change from day to day. A compression fracture in my spine has resulted in wedging (arthritis). I also have bone degeneration in my left shoulder and bone spurs in my right knee. I only just learned of this in September 2021.
This past weekend, I also wiped out on a patch of ice and fully dislocated my left knee. It wasn’t my first bad fall and it won’t be my last.
The point is, the earlier you get a diagnosis, the more chances you might have of a healthier life. A healthy diet. Healthy weight loss. Regular and low impact exercise like swimming, or resistance training can help to keep joints healthy.
Seeing the right doctor who takes the time to listen to you and is willing to make referrals is also key.
If your doctor dismisses your concerns and tells you it’s all in your head or to lose weight like my doctor did for many years — it’s time to see a new doctor.
Throughout my research, I was able to find a plethora of resources and supports. This research has helped to learn about my disability and how I can work on getting as healthy as I can.
If you are in the process of getting a diagnosis and need assistance, please feel free to reach out to me in the comments. I’m more than happy to offer advice. It can be a frustrating process – I know. But you are not alone. That’s what this blog is for. To share my experiences and to inform. And also to bring awareness to rarer diseases that many people don’t know about!
- The Ehlers Danlos Society
- hEDS checklist and criteria
- Rare diseases – joint hypermobility
- Dislocation management
Living Well Series
If you’d like to learn more about the comorbidities of hEDS, then please feel free to check out my Living Well series. It’s definitely not a new idea – I’m just sharing my own personal experiences to help others like me.
- Factor V Leiden and blood clotting disorders
- Coping with chronic insomnia
- Hypermobility, joint pain and leg cramps
- Over-training and common athletic injuries
- Chronic What is generalized anxiety?
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