Ehlers-Danlos syndrome (EDS) can turn spine pain into an almost constant travel companion. Physiotherapy is one of the main tools to regain function and quality of life, but not every approach will work. The aim of this article is to help you understand what is special about rehabilitation in EDS, what you can expect from it, and which signs suggest that you need a more in depth assessment.
- EDS affects connective tissue, so the usual rule of “more stretching and more strengthening” does not always work.
- Effective programmes prioritise stability and fine control of movement over sheer power or extreme flexibility.
- Your exercise plan should progress very slowly and adapt to your pain flares, fatigue and other comorbidities.
- There are warning signs that mean you should go to the emergency department or have an urgent medical review.
- Good communication between your physiotherapist, your treating doctor and, when appropriate, the spine team is key for your safety.
1. Why EDS changes the usual rules
EDS is a group of hereditary connective tissue disorders. In many people it appears as joint hypermobility, lax ligaments and a tendency to subluxations or dislocations. In the spine this can lead to segmental instability, chronic muscle overload and, in some cases, early disc degeneration or more complex problems such as craniocervical instability or tethered cord.
If your ligaments provide less support, your muscular and nervous systems have to work harder to stabilise you. That is why the usual strategies for back pain in people without EDS (strong stretches, aggressive manipulations, “cracking” the spine) may be of little use or even make things worse. In your case, physiotherapy should focus on:
- Improving neuromuscular control of the spine and of the shoulder and pelvic girdles.
- Strengthening the deep stabilising muscles with low loads at the beginning.
- Teaching you to move within safe ranges, avoiding hyperextension and movements that “go too far”.
- Managing pain without punishing sensitive tissues even more.
Understanding this is the first step so you do not get discouraged when exercises that helped other people with back pain do not really work for you.
2. Starting with stability, not just “doing more exercise”
Many people with EDS arrive at physiotherapy with a contradictory message. On the one hand they have been told to move and get stronger, and on the other hand every intense attempt ends in a pain flare or a new injury. The key is less about how much exercise you do and more about how you do it.
A spine focused physiotherapy programme in EDS usually starts with:
- Very gentle activation exercises for the transversus abdominis and the deep lumbar and cervical muscles.
- Diaphragmatic breathing training to reduce overall tension and improve trunk stability.
- Balance and proprioception work on stable surfaces, without jumps or sudden changes of direction.
- Low amplitude mobilisations within comfortable ranges, without forcing the end of the movement.
The goal of this phase is not to “work up a sweat” or improve cardiovascular fitness, but to teach your spine and joints to feel safe. As your control improves, more demanding strength and endurance progressions can be introduced, always with close monitoring of symptoms.
3. Avoiding both extremes: immobilising yourself or pushing too hard
With EDS it is easy to fall into two equally problematic extremes. One is fear of movement, avoiding activities for fear of damaging the spine. The other is trying to “make up for it” by doing exercises that are too intense, copying routines designed for people without hypermobility or following generic programmes from social media.
Physiotherapy should help you find a middle ground, based on three ideas:
- Gradual progression: increasing exercise level very slowly, week by week, depending on how your body responds.
- Pacing: learning to spread out effort throughout the day so you do not drain your reserves and can prevent “crashes” of pain and fatigue.
- Listening to signals: distinguishing between expected training discomfort and warning symptoms that mean you need to slow down.
In practice this means that a good physiotherapy plan will negotiate realistic goals with you (for example, walking 10 minutes in a row without a significant increase in low back pain, or being able to sit on a standard chair for 30 minutes without a crisis) and will adjust them according to your progress.
4. Choosing exercises that protect your joints and your spine
In Ehlers-Danlos syndrome not all exercises are equally safe for your back. Although every plan should be individualised, there are some general ideas that can help you understand why your physiotherapist chooses certain options and avoids others.
In many cases the focus is on:
- Isometric or low range strength exercises for the trunk and pelvic muscles.
- Closed chain work (for example, assisted partial squats) before explosive or impact movements.
- Partial weight bearing activities, such as water based exercise or gentle stationary cycling, when spine pain is very active.
- Balance and coordination training involving the whole spine, not only the area that “hurts the most”.
On the other hand, the following are often limited or avoided:
- Stretches held at the very end of range, especially if you tend to hyperextend your knees, elbows or spine.
- High velocity, high amplitude spinal manipulations, unless there is a very clear indication and they are performed by professionals with experience in EDS.
- Ballistic or repetitive impact exercises such as jumping, intense running or contact sports, at least until you have a solid base of strength and control.
If an exercise makes you feel that “your joints are slipping out” or you notice painful clunks in your spine, it is a clear sign that it should be reviewed or replaced.
5. Integrating spine pain into a global view of EDS
In many people with EDS, back pain does not appear on its own. It often goes together with severe fatigue, headaches, dizziness when standing up, dysautonomia, sleep disorders or digestive symptoms. All of this influences how you tolerate physiotherapy and which types of exercises are realistic in your daily life.
A careful physiotherapy plan will take into account:
- How your blood pressure and heart rate behave with effort, especially if there is a suspicion of postural orthostatic tachycardia syndrome (POTS) or other autonomic problems.
- Your energy level across the week, so that “strong” days and lighter days can be planned.
- Interaction with other treatments, such as splints, orthoses, medication for neuropathic pain or psychological therapies.
In practice this may translate into slightly shorter sessions, more focused on movement quality than on the number of repetitions, and into a special emphasis on education. Understanding what you can do between sessions to protect your spine and when to ask for help becomes part of the treatment.
6. Referral criteria and when to think beyond physiotherapy
Although physiotherapy is central in the management of spine pain in EDS, it is not always enough on its own. There are situations in which your physiotherapist should recommend a priority medical review or refer you to a spine team with experience in connective tissue disorders.
Some examples:
- Neck or low back pain that clearly worsens when you are standing or sitting and improves a lot when lying down, associated with dizziness, a feeling of “heavy head” or blurred vision.
- Progressive worsening of strength in arms or legs, clumsiness when walking or frequent falls.
- New signs of spinal cord or cauda equina compression, such as loss of bladder or bowel control, numbness in a “saddle” pattern or sudden difficulty walking.
- Spine pain that does not improve at all despite several months of well delivered conservative management and adjustment of comorbidities.
In these scenarios, the role of physiotherapy does not disappear, but it changes. It becomes part of a broader plan that may include advanced imaging or, in selected cases, interventional or surgical options.
7. When to go to the emergency department if you have EDS and spine pain
Most flares of back pain in EDS can be managed by adjusting exercise, using prescribed medication and staying in touch with your usual healthcare team. However, there are signs that require going to the emergency department without delay, just as in any other person with spine pain, bearing in mind that in EDS some problems can appear earlier or with slightly atypical symptoms.
Go to an emergency department if:
- You develop sudden or progressive loss of strength in one or both legs, difficulty walking or a tendency to fall abruptly.
- You notice new urinary or faecal incontinence, or marked difficulty starting to pass urine.
- You feel intense numbness in the genital area or on the inner side of the thighs.
- You develop high fever, feeling very unwell and intense back pain, especially if you have recently had a procedure or you are immunosuppressed.
- Neck pain appears together with acute torticollis, difficulty holding your head upright or changes in your voice or swallowing.
In these situations, the priority is to rule out neurological or infectious complications. Physiotherapy is resumed afterwards, once the diagnosis is clear.
Myths and facts about physiotherapy, EDS and spine pain
“If I have EDS, it is safer not to exercise so I do not get injured”
Prolonged inactivity weakens your muscles even more, worsens spinal stability and promotes cardiovascular deconditioning. The challenge is not to avoid movement, but to find the type and dose that are right for you.
“If I do not sweat or feel sore, the physiotherapy session has not worked”
In EDS, many important gains come from exercises that look “small”: improving deep muscle activation, correcting movement patterns or reducing tension in overloaded muscles. Not every improvement is measured in sweat.
“Intense stretching is always good for the back”
If your ligaments are already lax, forcing the range of movement can increase instability and pain. Stretching has its place, but it should be gentle, controlled and directed at areas that are truly tight, not used to “open up more” a joint that is already hyperextended.
“If an exercise bothered me once, I will never be able to do it again”
Sometimes the problem is not the exercise itself, but the timing, the load or the context. In the hands of a professional with experience in EDS, many movements can be reintroduced later on, adapted to your situation.
“Physiotherapy alone is going to ‘put my spine back into place’ for good”
EDS is a chronic connective tissue condition. Physiotherapy does not “cure” hypermobility, but it can significantly change your function, pain levels and independence. It is a powerful tool, but it is part of a global approach.
Frequently asked questions
Is physiotherapy mandatory if I have EDS and spine pain?
It is not an “obligation”, but it is one of the interventions with the best benefit to risk ratio when it is properly adapted. It can help you reduce pain, improve function and gain confidence in movement.
What kind of physiotherapist should I look for?
Ideally someone with experience in connective tissue disorders, hypermobility or complex chronic pain. If they do not yet have that experience but show a genuine interest in learning about EDS and work in coordination with your medical team, they can also be a good option.
How long does it take to notice improvement in the spine?
It varies a lot. Some people notice changes within a few weeks, while others need several months of consistent work. In EDS it is common for progress not to be linear and for there to be ups and downs.
Can I exercise at home without supervision?
Once you have learned the technique and have a clear plan, many exercises can be done at home. It is important to have regular check ins to adjust the programme and avoid mistakes that could worsen your pain.
Are “heavy” strength exercises always dangerous in EDS?
Not necessarily. In some cases, strength work with moderate or relatively high loads, well progressed and controlled, can greatly improve stability and pain. What is not safe is improvising intense routines without supervision or adaptation.
Can physiotherapy replace spine surgery in EDS?
In many cases it helps to avoid or delay surgery, but there are situations where an operation is still necessary. What matters is that the decision is made after a complete evaluation, including your symptoms, your imaging and your response to conservative treatment.
Short glossary
Ehlers-Danlos syndrome (EDS): group of hereditary connective tissue disorders that can cause joint hypermobility, fragile skin and problems in blood vessels and organs.
Hypermobility: ability of a joint to move beyond what is considered a normal range. In EDS it is usually due to lax ligaments.
Spinal stability: ability of the muscles and passive structures (ligaments, discs) to keep the vertebrae in a safe position during movement.
Proprioception: sense that informs the brain about the position of the joints and the body in space.
Pacing: activity management strategy that helps you spread your efforts to avoid peaks of fatigue and pain.
Conclusion and gentle call to action
Living with Ehlers-Danlos syndrome and spine pain can be exhausting, but you are not condemned to live forever with the same level of pain. Specialised physiotherapy focused on stability, control and respect for your limits can make a noticeable difference in your daily life.
If you recognise yourself in what you have read and you still do not have a rehabilitation plan adapted to your situation, talking to a team that understands EDS and spine disease can be a good next step. A comprehensive evaluation will help decide which type of physiotherapy is appropriate for you, which goals are realistic and how to coordinate it with your other treatments.
References and useful resources
- Specialised physical therapy before and after spine surgery in patients with Ehlers-Danlos syndrome
- The Ehlers-Danlos Society: Physical Therapy
- Evidence-based rationale for physical therapy treatment in JHS/hEDS
- ANSEDH: Joint hyperlaxity and physiotherapy
- Hypermobility spectrum disorders: A review (Carroll, 2023)
- Home-based exercise therapy for shoulder instability in hEDS/HSD (Spanhove, 2023)
Important notice: This article is for information purposes only and can never replace individual assessment by healthcare professionals. Do not start, change or stop treatments without consulting your doctor and your physiotherapist.
