Estimated reading time: 6 minutesIn my 16 years of clinical practice, I have worked with clients of all ages with EDS and HSD. I’ve seen children, teenagers, and adults of all ages.
It always surprises me that patients are often told by their doctors that EDS gets better with age so no need to worry about it. That may be true in the fact that as we age, we tend to lose mobility and become stiffer in our joints. But that isn’t taking into account the fact that EDS is a connective tissue disorder.
hEDS does not just affect the musculoskeletal system. Other systems are going to be impacted as we age. Not to mention the impact of hormonal changes as we age, too. The menopause can be hugely disruptive to many patients with EDS, myself included. Entering this period of my life was probably one of the most troublesome times.
People often make throw-away comments about EDS – you’re too young, you’re too old, and so on, to have XY or Z. These comments do not factor in the individual nature of this condition. We will all respond differently to the aging process to some degree, and the impact will depend on each person’s circumstances.
Is EDS considered progressive?
EDS is not generally considered a progressive syndrome in that it does not tend to get worse in a linear manner over time, like Parkinson’s disease, Multiple Sclerosis, or Rheumatoid arthritis.
However, the symptoms and complications of EDS could become more pronounced as a person ages, leading to the perception it is progressive. This is particularly true if the patient has not had the appropriate care and treatments in earlier years. This is why I advocate strongly for diagnosis and early intervention to improve patient outcomes.
It is important to point out that there are normal age-related changes in collagen that happen to everyone, which leads to more body-wide changes like skin aging, osteoporosis, and osteoarthritis (1).
EDS at different stages of life
In a series of studies by an Italian research group, a three-step model was developed to describe how they often observe hEDS progression. This was based on research in a specific population and their clinical experience. They see 3 stages – the hypermobility phase, the pain phase, and the stiffness phase (2).
The 3 Phases include (2, 3):
Hypermobility phase: Childhood – the first decade of life
- Hypermobile party tricks
- Sprains & dislocations
- Growing pains, pain in the lower limbs
- Post-exertional pain, cramps
- Easy to fatigue
- Constipation (or diarrhea)
- Some experience motor coordination disorder (mild hypotonia, dyspraxia)
Pain Phase: The Second to 4th Decade of life
- Pain becomes more chronic and generalized
- Often diagnosed with fibromyalgia
- Increase in pelvic pain (often in females) and headache
- Exacerbation of fatigue
- Orthostatic intolerance (difficulty standing – potentially related to dysautonomia)
- Functional gastrointestinal disorders
Stiffening phase
- Significant reduction in function due to pain and fatigue
- Loss of generalized joint hypermobility
- Arthritis
- Loss of muscle mass and weakness
- Increased disability
Please note that a group of experts cited these stages but made it clear that it may be a prototype of how it progresses – and stated “not every patient experiences all three phases and the rate of transition between these phases can be highly variable (3)”
In fact, a longitudinal study surveyed participants at baseline (the average age was 38.5 at the start) and then again at a later time point (an average of 11.6 years later). 91 participants completed follow-up surveys, and this group included different types of EDS. They found that some participant’s pain levels improved dramatically over time, some stayed the same, and some declined (4).
They could not find an average trend and say “This is an important clinical point because clinicians should know the outcomes for patients with EDS may be widely variable(4).”
It is also important to mention there are things we can do to address this and prevent or relieve pain. The group that defined the three stage progression model proposed a mechanism of progression: The first phase is accompanied by ligament laxity, lack of proprioception, and lower muscle tone, which leads to soft tissue and joint injury. The effect of these injuries accumulates over time and leads to pain sensitization as widespread pain increases, some of this due to central sensitization and nociplastic pain. We can then experience kinesiophobia (or fear of movement) and fear of pain which leads to lack of movement and further reduction in muscle tone and stability that further increases disability (2).
If we can begin addressing this at a young age by improving proprioception, building muscle tone, implementing joint protection and pain management strategies, regulating the nervous system, and ensuring access to appropriate medical care and support, perhaps we can make a significant difference. That said, it’s never too late to start making positive changes
I am a strong believer that we can turn down that pain dial and get back a feeling of safety with movement. We can improve our pain, strength, and stability – I have seen it over and over with my clients and members of The Zebra Club. If you can find ways to move that you love, and help you feel safe – you can improve so much.
EDS Beyond the 4th Decade of Life
As mentioned above, some will lose their joint hypermobility while others won’t. The loss of hypermobility can make diagnosis of EDS difficult over the age of 40 quite difficult. There are also other conditions that commonly accompany EDS that also present with other chronic pain conditions like me/cfs, TMJ dysfunction, sleep disturbances, depression, and anxiety. All of these can vary and may not be associated with the level of hypermobility (3).
Unfortunately, there is very little research on EDS in the later stages of life, the research that does exist on aging looked a relatively young samples according to one review paper (1). They assessed the decline of physical function based on previous research and found the maximum age in one sample was 58 (1).
In their analysis of the literature, they did find a few instances where the decline in physical function was not linear.
For instance, one study found that while people with hEDS/HSD had lower muscle strength at baseline and follow-up– they maintained the strength of their knee flexors. This was attributed to a higher likelihood of participating in physical therapy in the hEDS/HSD group compared to controls (1, 5).
Another study found that 22% of postmenopausal study subjects had symptom improvement after menopause (1, 6). It was also found that the burden of autonomic (like dysautonomia) was less with increased age (1,7).
It is quite clear that more research is needed on older adults. With the increasing awareness we are witnessing, hopefully, this story will change.
Will hypermobility get worse with age?
Hypermobility – defined as the ability of a joint to move beyond the typical range of motion – may become less of an issue as we age. There tends to be a natural loss of flexibility. This may reduce the extent of hypermobility in the joints, but this is not always the case. I have some elderly clients, and they are still very mobile in some joints. With other elderly clients, I can see that the joint range has reduced, but they were clearly hypermobile in their youth.
It is worth noting that although hypermobility may reduce, that does not necessarily mean any pain associated with the hypermobility goes away. Over time, especially without movement therapy to train control and correct movement patterning, joint pain may increase due to cumulative wear and tear over the years. This can lead to conditions like osteoarthritis.
Tips for Movement as we get older
As we get older, we don’t want to stop moving. It will become even more important to work on balance, proprioception, and bone density to avoid conditions like osteoporosis. We may need to modify our movements and exercises but here are some ideas:
- Work on joint stability and building muscle tone around the joints. Wear and tear on the joints can lead to increased instability and pain, we can work on strength and stability to prevent this.
- Participate in movement therapy or physical therapy. Pain may become worse due to this wear and tear and the long-term use of compensatory patterns, if we can find balance through the body we can adress the pain from these patterns.
- Keep mobile. Practice simple moves like Sit to Stand out of a chair. This will keep mobility and leg strength.
- Work on balance. It is OK to hold onto a sturdy chair as you practice movements like heel raises, standing on one leg, and walking on the spot.
- Walking, swimming or stationery biking can be useful to keep cardiovascular health. As we age there is an increased risk of arterial rupture or aneurysm.
- Work on breath and relaxation techniques to keep the nervous system calm.
- Light strength training. I recommend low weights and more reps as tolerated to strengthen muscles around the joints.
- Dynamic stretching. This can help us avoid stiffness without overstretching the joints.
- Pacing and resting as always – at any age.
What has your experience been with aging and EDS? Let me know in the comments below.
Here is a video on Dynamic Stretching to get you started.
FAQ:
Does EDS get worse with age?
For some, symptoms of EDS do get worse with age. There seems to be a cumulative effect of ongoing injury from a young age and increases in symptoms with hormonal changes. Things can be done to reduce pain.
Can Ehlers-Danlos show up later in life?
It may get diagnosed later in life, but it is a genetic disorder that may not have been symptomatic previously. There seems to be a hormonal component with some getting worse at puberty or menopause.
Is EDS progressive?
Symptoms may get worse over time due to a variety of reasons, but this does not occur in a linear pattern and is different for everyone with EDS. In that sense, it is not progressive.
Literature Review by Catherine Nation, MSc, PhD
Works Cited
- Anderson & Lane (2023) Clinical trajectory of hypermobile Ehlers–Danlos syndrome/hypermobility spectrum disorders in older adults. Journal of the American Association of Nurse Practitioners.
- Castori, et al. (2013) Re-Writing the Natural History of Pain and Related Symptoms in the Joint Hypermobility Syndrome/ Ehlers–Danlos Syndrome, Hypermobility Type. American Journal of Medical Genetics Part A.
- Tinkle, et al. (2017) Hypermobile Ehlers–Danlos Syndrome (a.k.a. Ehlers–Danlos Syndrome Type III and Ehlers–Danlos Syndrome Hypermobility Type):Clinical Description and Natural History. American Journal of Medical Genetics Part C (Seminars in Medical Genetics).
- Schubert, et al. (2022) Longitudinal Analysis of Symptoms in the Ehlers-Danlos Syndromes. American Journal of Medical Genetics Part A.
- Coussens, et al. (2022) Does muscle strength change over time in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorder? An eight-year follow-up study. Arthritis Care & Research.
- Hugon-Rodin, et al. (2016) Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type Ehlers-Danlos syndrome: A cohort study. Orphanet Journal of Rare Diseases.
- De Wandele, et al. (2014). Autonomic symptomburden in the hypermobility type of Ehlers-Danlos syndrome: A comparative study with two other EDS types, fibromyalgia, and healthy controls. Seminars in Arthritis and Rheumatism.
6 Comments
Kay Kingsley - 25th January 2025
This was a fascinating article for me. I am about to turn 76 and was diagnosed at age 70. Before finding The Zebra Club about 9 months ago I was unable to find proper treatment. Even the doctor who diagnosed me was unable to provide treatment as he admitted he didn’t know enough and there was no treatment. I started having dislocations of my right shoulder at age 16. I suffered many soft tissue injuries and dislocations and was diagnosed with osteoarthritis in my 20’s and various other things that led to many rounds of physical therapy, some helpful, some hurtful. I think a diagnosis earlier in life would have made a huge difference. Still, in my 70’s it’s been very helpful to have TZC and I’m starting to get better. I’m very stiff but also still hyper mobile in many joints. I keep searching for health practitioners with EDS knowledge for hands on treatment. I live in an EDS treatment desert but have found a clinic 400 miles away and may try to get treatment there.
Jeannie Di Bon - 27th January 2025
Thank you for taking the time to comment. I am so glad the article was helpful – there really isn’t much info out there about EDS and the ageing process. Thank you for being a member of The Zebra Club. So happy to hear it is helping.
Debra Grodensky - 21st January 2025
I had symptomatic onset of hEDS in adolescence. The pain levels were very high, I was undiagnosed, and became an elite athlete. After graduating from college and retiring from sport, the pain increased exponentially, mostly in my spine, with multiple bulging and herniated discs, but also TMJ, migraines, GI issues. Now that I’m in menopause, the pain has changed, is less in my back, more in my hips. I cannot stand in one place without pain. I bruise exponentially easier. I sleep more. I’m only 55, but have the same “aging symptoms” as my 84 year old mother-in-law. Bladder leaks, bruising, sleeplessness at night, I didn’t receive my Dx until I was 48, before menopause, but this onset of worse symptoms and new symptoms is reminiscent of onset at adolescence. As the decades pass, hEDS absolutely has been progressive for me.
Jeannie Di Bon - 28th January 2025
Thank you for taking the time to comment and share your experience.
Ingegerd Lonnroth - 21st January 2025
I had some more or less stable years in my early seventies, but a tooth extraction and a subsequent whip lash has totally destabilised my head.(and my pelvis) I am now 78 years old and am at a total loss of what to do. I still try to go swimming though.
Jeannie Di Bon - 28th January 2025
Thank you for sharing your EDS ageing experience with us.