This article is part of our comprehensive guide to hypermobility and Ehlers-Danlos syndrome.
Aging with Ehlers-Danlos Syndrome (EDS) is a bit of a paradox. One factor that significantly affects how EDS progresses in women is the hormonal transition: the effects of hormonal changes during perimenopause can shift symptoms considerably. For some, hypermobility decreases over time as we retain less and less water, but that doesn’t always mean things get easier. Instead, pain, fatigue, and the many systemic complications often become more prominent in our lives. Like many of our clients, you may have wondered to yourself “does EDS actually get worse with age?”, and the answer really depends on the type of EDS and your individual circumstances and lifestyle.
EDS isn’t a degenerative condition in the way that some like Parkinson’s is, but that doesn’t mean it stays the same. The reality is that aging with EDS is highly individual, shaped by genetics, lifestyle, and access to proper management, in the same way some may be more predisposed to EDS weight gain, and some to weight loss. It isn’t uncommon for those with EDS and hypermobility to feel like they are playing the health care postcode/zip code lottery, wherein your location in the country, town or state, massively affects your access to proper car.
While some people find relief as their joints stiffen as they age, others develop new challenges like osteoarthritis, cardiovascular issues, worsening autonomic dysfunction, or they may find EDS flare ups increase.
In this article, I want to look at what the research says about aging with EDS, as well as the real-life experiences of those who have lived it, including our clients. So, If you’re wondering what the future holds, or indeed how to navigate it as smoothly as possible, then you are in the right place.
Aging with EDS/Hypermobility
The fact that EDS doesn’t fit neatly into the typical aging process, makes the whole topic unnecessary complicated, as for some, EDS symptoms stay relatively stable for years before suddenly escalating. Hormonal changes, cumulative joint damage, and even external stressors can all play a role in how EDS progresses, and not to mention, the EDS medical trauma that many experience over the years. Research tells us that different subtypes of EDS age differently, vascular EDS (vEDS), for example, carries an increased risk of life-threatening complications over time, whereas hypermobile EDS (hEDS) tends to be marked by chronic pain and early-onset osteoarthritis rather than a clear-cut decline.
Gastrointestinal Changes: Slower Motility and Increased Sensitivities
Gastrointestinal problems are common in EDS, but many people don’t realise how much worse they can become with age. Studies show that 40-60% of individuals with hEDS experience delayed gastric emptying, chronic constipation, or gastroparesis by midlife (8). This is partly due to connective tissue dysfunction in the gut, which affects peristalsis (the muscle contractions that move food through the digestive system).
Pelvic organ prolapse is also a growing concern, especially for women with EDS who have gone through multiple pregnancies. By age 50, around 13-75% of women with hEDS or cEDS experience some degree of pelvic organ prolapse, which can lead to urinary and bowel dysfunction (9). Many find that hormonal changes during menopause exacerbate these symptoms, as oestrogen plays a key role in collagen maintenance.
Neurological and Cognitive Changes: Brain Fog, Fatigue, and Sensory Processing Issues
For years, there have been reported brain fog, fatigue, and cognitive difficulties in EDS, but it’s only recently that researchers have started looking into the neurological effects of EDS as people age. Chronic pain and sleep disturbances appear to contribute to cognitive dysfunction, particularly in working memory and executive function. In fact, studies show that by age 50, health-related quality of life scores are 30% lower in people with hEDS compared to healthy controls, largely due to fatigue and cognitive issues (10).
Another area of concern is small fiber neuropathy (SFN), a condition that affects the small nerve fibers responsible for pain and temperature sensation (11). Many older EDS patients report a burning or tingling sensation in their hands and feet, which may be linked to long-term autonomic dysfunction and connective tissue instability in the nervous system.
These systemic changes mean that aging with EDS isn’t just about managing joints, it’s about taking a whole-body approach to care. While the effects of aging can’t always be stopped, early intervention, lifestyle adjustments, and medical monitoring can help slow the progression of symptoms and improve overall quality of life. So what can you do to stay ahead of these challenges?
How to Slow Progression and Improve Quality of Life
Aging with EDS isn’t something you can stop, but there’s a lot you can do to manage symptoms, reduce complications, and improve overall function. The key is proactive management, addressing issues before they become major problems and making adjustments based on how your body changes over time. While there’s no one-size-fits-all approach, research and lived experiences suggest that the following strategies can make a big difference. For the latest on this, see our article on the 2026 EDS criteria review.
1. Strength Training and Proprioception Work: Protecting Joints as You Age
One of the best ways to slow the musculoskeletal decline that comes with aging in EDS is to strengthen the muscles that support your joints. Low-impact strength training, resistance exercises, and proprioceptive rehabilitation help compensate for weakened connective tissue, reducing the frequency of subluxations and improving overall joint stability. After all if your brain doesn’t know where your joints are, it can’t contract, stabilise, and move them properly. So, ensuring that your body’s cortical maps (like google maps of your body) are up today, is extremely important. This way you will be much more stable and stronger, before you even touch a weight. Make sure you check out our hypermobility and exercise article which goes in-depth into cortical maps.
Studies show that structured resistance training can increase muscle strength by 20-30% in hEDS patients, leading to fewer dislocations and improved pain levels (12). However, traditional weightlifting may not be the best approach, many people with EDS benefit more from controlled, functional movements, so I would such starting with some tactile cues exercises: video below.
References:
- medlineplus.gov. (n.d.). Ehlers-Danlos syndrome: MedlinePlus Genetics. [online] Available at: https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome.
- Serwet Demirdas, Lisa, Lechner, R., Bos, J., Alsters, S.I.M., Baars, M.J.H., Baas, A.F., Özlem Baysal, van, Eelco Dulfer, Noor A.A. Giesbertz, den, H., Hilhorst-Hofstee, Y., Kempers, M.J.E., Komdeur, F.L., Loeys, B., Daniëlle Majoor-Krakauer, Ockeloen, C.W., Eline Overwater and Peter (2024). Vascular Ehlers-Danlos Syndrome: A Comprehensive Natural History Study in a Dutch National Cohort of 142 Patients. Circulation Genomic and Precision Medicine, [online] 17(3). doi:https://doi.org/10.1161/circgen.122.003978.
- Murray, M.L., Pepin, M., Peterson, S. and Byers, P.H. (2014). Pregnancy-related deaths and complications in women with vascular Ehlers–Danlos syndrome. Genetics in Medicine, 16(12), pp.874–880. doi:https://doi.org/10.1038/gim.2014.53.
- Nawarskas, J.J., Cheng-Lai, A. and Frishman, W.H. (2017). Celiprolol. Cardiology in Review, 25(5), pp.247–253. doi:https://doi.org/10.1097/crd.0000000000000159.
- van Meulenbroek, T., Huijnen, I.P.J., Simons, L.E., Conijn, A.E.A., Engelbert, R.H.H. and Verbunt, J.A. (2020). Exploring the underlying mechanism of pain-related disability in hypermobile adolescents with chronic musculoskeletal pain. Scandinavian Journal of Pain, 21(1), pp.22–31. doi:https://doi.org/10.1515/sjpain-2020-0023.
- Malfait, F., Wenstrup, R. and De Paepe, A. (1993). Classic Ehlers-Danlos Syndrome. [online] PubMed. Available at: https://pubmed.ncbi.nlm.nih.gov/20301422/.
- Rashed, E.R., Ruiz Maya, T., Black, J., Fettig, V., Kadian-Dodov, D., Olin, J.W., Mehta, L., Gelb, B.D. and Kontorovich, A.R. (2022). Cardiovascular manifestations of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Vascular Medicine (London, England), [online] 27(3), pp.283–289. doi:https://doi.org/10.1177/1358863X211067566.
- Upadhyaya, A., Jamshed Bomanji, Arshad, M., Vöö, S., Zarate-Lopez, N. and Asma Fikree (2024). P388 Delayed gastric emptying is not significantly increased in patients with hypermobile ehlers-danlos syndrome. Poster presentations, [online] pp.A289.1-A289. doi:https://doi.org/10.1136/gutjnl-2024-bsg.470.
- Nazemi, A., Shapiro, K., Nagpal, S., Rosenblum, N. and Brucker, B.M. (2023). Pelvic Organ Prolapse in Ehlers-Danlos Syndrome. Case reports in urology, [online] 2023, pp.1–5. doi:https://doi.org/10.1155/2023/6863711.
- Sokol, O.E., Biggs, E.E., Berger, A.S., Simons, L.E. and Bhandari, R.P. (2025). The Relationship Between Fatigue, Pain Interference, Pain-Related Distress, and Avoidance in Pediatric Hypermobile Ehlers–Danlos Syndrome. Children, [online] 12(2), p.170. doi:https://doi.org/10.3390/children12020170.
- Fernandez, A., Bérengère Aubry-Rozier, Mathieu Vautey, Berna, C. and Suter, M.R. (2022). Characterization of small fiber neuropathy in hypermobile Ehlers Danlos Syndrome. medRxiv (Cold Spring Harbor Laboratory). doi:https://doi.org/10.1101/2022.02.17.22271061.
- Zabriskie, H.A. (2022). Rationale and Feasibility of Resistance Training in hEDS/HSD: A Narrative Review. Journal of Functional Morphology and Kinesiology, 7(3), p.61. doi:https://doi.org/10.3390/jfmk7030061.
For more on this topic, you might also want to read about how EDS changes during pregnancy and beyond.
