I have been following this thread with great interest, although I have unfortunately not contributed anything to it so far. Over the past two years, one of my main focuses has been understanding the connection between neurodivergent conditions and hypermobility.
Looking back at my own experiences, I remember that as a child I could perform unusual contortions with my legs—I could even place my feet behind my head. To this day, I can touch my nose with my tongue (a rather amusing sign of hypermobility). I suffered from recurrent blockages in the iliosacral joint (ISG) and the costovertebral joints, and at the age of 28 I had my first herniated disc. I also had a nickel allergy and gastrointestinal issues. At 14, I underwent my first surgery to remove two large ovarian cysts. At 46, I was prescribed prism glasses.
Today, I know that I am neurodivergent—a combination of ADHD and Asperger’s syndrome, along with a generalized anxiety disorder that has been present since childhood. In recent years, all these individual symptoms have finally received a unifying explanation: hypermobility due to a connective tissue disorder.
What was particularly striking was that I have exceptionally good scar healing, and despite significant weight gain during two pregnancies (30 kg and 35 kg respectively), I developed no stretch marks at all. This initially seemed to rule out a connective tissue weakness. It was only through the COVID-19 pandemic and the associated research into Long COVID that the topic suddenly gained prominence, as Ehlers-Danlos syndrome (EDS) was increasingly discussed.
As a physiotherapist, I have noticed that almost all of my patients share a common underlying factor: hypermobility, which is the cause of their orthopedic problems.
In the meantime, I have completely restructured the diagnostic process in my practice. In many patients, I can already recognize hypermobility or connective tissue weakness at first glance—based on characteristic features in facial expression, gait, and overall movement patterns. I have been able to reduce the initial assessment to just a few essential points.
Diagnostics:
The Beighton Score becomes less reliable with increasing age, as degenerative changes such as osteoarthritis, polyarthritis, or stiffening due to muscle shortening reduce many of the signs. Typically, often hyperextension of the little fingers and thumbs remains, along with elbow extension of about 10 degrees, sickle-shaped knees, forward bending of the trunk, and hyperlordosis of the lumbar spine.
This is followed by questions about whether frequent manipulations of the thoracic spine (TWS) or the iliosacral joint (ISG) have taken place. Is there creaking in the cervical spine (CWS) or cracking sounds during joint movements? Are there problems with the temporomandibular joint?
Internal medicine:
Are there issues with the bowels (frequent diarrhea), food intolerances, or allergies since childhood?
Genetics/Epigenetics:
Is there a familial clustering of the mentioned symptoms? Are the person’s own children conspicuous with regard to the Beighton Scale? (There is an almost 100% correlation between mothers and at least one daughter.)
Pain:
Do pains occur similar to those in fibromyalgia, influenced by cold, heat, or stress?
Psychological:
Is the person rather anxious, highly sensitive (HSP), have they had panic attacks in the past, or experienced difficulties with mathematics or reading?
Gynecological:
Have there been cysts, period pains, weight gain, or known endometriosis? PCO
Vascular:
Are there indications of a vascular compression syndrome such as nutcracker syndrome or May-Thurner syndrome? Do varicose veins occur?
The diagnostic process usually takes 15 minutes and provides a very good overview; some details are added during the course of treatment.
The biggest problem in therapy is the complete lack of knowledge among doctors and therapists regarding the treatment of hypermobile patients. We were not trained for this. My great advantage was that my first profession was as a masseur, where we were specifically trained in connective tissue. Today, I would say that this profession has effectively been erased, because only in that profession was a deep understanding of connective tissue as a sensory organ taught.
As a physiotherapist, one is more of a technician – it is not about a deep understanding of connective tissue. Physiotherapists often torment the connective tissue with foam rollers, trigger point devices, and massage guns. Doctors frequently give the advice: “Do more exercise, you have no muscles.” However, highly sensitive connective tissue reacts extremely to pressure with mast cell activation and subsequent pain development.
Proprioception is the biggest problem: signal transmission is impaired, and the body/brain does not correctly recognize its position in space. Many of my patients have been greatly helped by Training Core Musculature, compression stockings, Orthesen, tight neuro-underwear, as well as weighted vests or weighted blankets. This also serves in the therapy of ADHD and neurodegenerative diseases (Alzheimer’s, dementia).
Overall, the information in this thread is worth its weight in gold, and I would like to thank everyone – especially
@Gaby – for bringing light into this completely underestimated field.
