Ehlers Danlos Syndromes & Hypermobility Syndromes

Hypermobility refers to joints that move beyond the typical range of motion. This can occur for many reasons, from natural flexibility or training in activities like ballet and gymnastics, to connective tissue conditions such as Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorders (HSD). While some people experience hypermobility without symptoms, others may face challenges such as joint pain, instability, frequent sprains or dislocations, and difficulty healing after injuries or surgery.

Hypermobility is also often linked to other conditions including dysautonomia (such as POTS), migraines, gastrointestinal problems, and chronic pain syndromes. At Lavender Spectrum Health, we recognize the wide impact hypermobility can have on daily life, and we are committed to providing compassionate, comprehensive care tailored to each individual’s needs.

Hypermobility syndromes can cause a range of symptoms that affect quality of life, daily functioning, and the ability to work. The Ehlers-Danlos Syndromes (EDS) are one group of conditions within the broader category of hypermobility syndromes. This means that all forms of EDS involve joint hypermobility, but not everyone with joint hypermobility has EDS. Some people are flexible because of their body type, physical training, or other connective-tissue conditions not classified as EDS. In other words: EDS is always a hypermobility syndrome, but hypermobility alone does not always mean EDS.

At Lavender Spectrum Health, we can do a hypermobility evaluation using the Beighton Scale. If this evaluation is positive, we can diagnose hypermobility syndrome. If you have hypermobility syndrome, there are many different things we can do to support you. We have limited options for referral for evaluation for hypermobile Ehlers Danlos Syndrome, many of which do not take insurance or have a wait list greater than one year.

Chronic Pain Treatment

We understand that hypermobility syndromes cause chronic pain due to repeated joint injury from normal everyday activities. Our providers will work with you to explore treatments for your pain including:

Referring you to physical therapists specialized in hypermobility syndrome
Discussing options for joint braces and ordering these if appropriate
Discussing options for mobility equipment and referring you for evaluation for a wheelchair, electric wheelchair, or other mobility aids
Discussing other accommodations such as disabled parking placard
Prescribing non-opioid medications for chronic pain if appropriate for you and safe

Work Accommodations & FMLA

We understand these symptoms may impact your ability to work. We are happy to discuss options to make your life more supportive including FMLA/intermittent leave, disability accommodations, and other supports and complete paperwork on a case by case basis after reviewing all the information including your job description. Please see our disability policy for more specifics.

Screening for Common Comorbidities

Many conditions occur commonly with hypermobility syndromes. We can help identify conditions that may be impacting you. While we cannot diagnose all of these, we can help with referrals where appropriate.

Care Coordination

We know the other people on your team may not understand how hypermobility affects your other conditions. We are happy to discuss treatment options your other specialists recommend to determine if there are any complications or contraindications your other healthcare team members may not be aware of. We have also made a handout below to give to providers to help them understand the impact of hypermobility on other conditions.

Direct to Consumer Genetic Testing

Hypermobile EDS, the most common form of EDS, does not have a genetic test that accurately identifies every individual with the condition. There are other forms of EDS that do have connective tissue genetic markers as well as other connective tissue disorders that have genetic markers.

If you are interested in genetic testing for connective tissue disorders, consider the following direct to consumer test.

Learn more about Direct to Consumer genetic testing

here:

https://www.ehlers-danlos.com/genetics-and-inheritance/

Invitae connective tissue panel

https://www.invitae.com/providers/test-catalog/test-434340

Disorders tested:

ABL1-related congenital heart defect and skeletal malformation syndrome
Arterial tortuosity syndrome
Autosomal dominant polycystic kidney disease
BGN-related conditions, including X-linked spondyloepimetaphyseal dysplasia (SEMD) and Meester-Loeys syndrome
Birt-Hogg-Dubé syndrome
Brittle cornea syndrome
Buschke-Ollendorff syndrome
Camurati-Engelmann disease
COG7-congenital disorder of glycosylation
COL4A1-related disorders
Congenital contractural arachnodactyly/Beals-Hecht syndrome
Cutis laxa
Ectopia lentis
Ehlers-Danlos syndrome
Fibrodysplasia ossificans progressiva
Geleophysic dysplasia
Geroderma osteodysplastica
Homocystinuria due to cystathionine beta-synthase deficiency
Joint dislocations, short stature and craniofacial dysmorphism with or without congenital heart defects
Larsen syndrome
Loeys-Dietz syndrome
Lysyl hydroxylase-3 deficiency
Macrocephaly, alopecia, cutis laxa, and scoliosis
Marfan syndrome
MED12-related conditions, including Lujan-Fryns syndrome and Opitz-Kaveggia syndrome
Menkes disease
Mitral valve prolapse
Myhre syndrome
NOTCH1-related aortic valve disorders
Osteogenesis imperfecta
Periventricular nodular heterotopia (X-linked)
Pseudoxanthoma elasticum
Pseudoxanthoma elasticum-like disorder with multiple coagulation factor deficiency
Shprintzen-Goldberg syndrome
SLC26A2-related conditions, also called sulfate transporter-related osteochondrodysplasias, including atelosteogenesis type 2 (AO2), achondrogenesis type 1B (ACG1B), diastrophic dysplasia (DTD), and multiple epiphyseal dysplasia type 4 (EDM4, or rMED)
Smooth muscle dysfunction syndrome
Spondyloepiphyseal dysplasia with congenital joint dislocations
Stickler syndrome
Thoracic aortic aneurysm and dissection
Transaldolase deficiency
Weill-Marchesani syndrome/Weill-Marchesani-like syndrome

Invitae EDS Panel

https://www.invitae.com/providers/test-catalog/test-02313

Ehlers-Danlos syndrome (EDS)
- classic type (types I/II)
- vascular type (type IV)
- kyphoscoliotic form (type VI)
- arthrochalasia type (types VIIA/B)
- dermatosparaxis type (type VIIC)
- cardiac valvular form
- musculocontractural type 1
- myopathic type
- spondylodysplastic form
Osteogenesis imperfecta (OI)
Other related disorders

Living Well with Hypermobile Ehlers-Danlos Syndrome (hEDS)

A Patient Guide to Self-Management at Home

What Is hEDS?

Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue condition that affects collagen, the protein that gives structure and support to joints, skin, blood vessels, and organs.

Common features include:

Joint hypermobility (“double-jointed” feeling)
Frequent sprains, subluxations, or dislocations
Chronic pain or muscle tightness
Fatigue
Easy bruising
Autonomic symptoms (lightheadedness, heart racing)
Gastrointestinal symptoms

There is no cure, but symptoms can be significantly improved with consistent, structured self-management.

1. Joint Protection & Stability

The core principle of hEDS management is:

Stability over flexibility.

Because ligaments are lax, your muscles must act as your stabilizers.

Daily Joint Protection Tips

Avoid locking knees or elbows while standing.
Sit with feet flat on the floor instead of crossed.
Use two straps for backpacks, purses, or bags instead of one shoulder.
Avoid deep stretching or yoga poses that push into the end of the range.
Modify activities that cause repeated subluxations.
Consider wrist braces, knee braces, lumbar support braces
Consider finger splints

Bracing & Support

Braces can be helpful during flares or high-risk activities, but should not replace strengthening.

Common tools:

Compression sleeves (knees, wrists, ankles)
Joint braces: wrist, knee, lumbar
Ring splints for finger instability
KT tape for proprioceptive feedback
Supportive shoes (firm heel counter, good arch structure)

If a joint frequently dislocates or subluxes, a physical therapist familiar with hypermobility can help design a stabilization plan.

2. Strengthening Safely at Home

Strength training is the most important long-term treatment.

Guiding Principles

Start low resistance.
Focus on slow, controlled movement.
Avoid fast or ballistic motions.
Stop before joint fatigue leads to instability.

Helpful Exercises

(Always clear new programs with your clinician if unsure.)

Core stabilization

Dead bugs
Modified planks (on knees or elevated)
Bird dogs

Hip and knee stabilization

Clamshells
Glute bridges
Wall sits (short duration)

Shoulder stabilization

Resistance band rows
Scapular retraction holds
External rotation with band

Frequency

2–4 times per week
10–15 repetitions per movement
Focus on quality, not intensity

Progress slowly. Improvement takes months, not weeks.

3. Pain Management at Home

Pain in hEDS often has multiple contributors:

Joint instability
Muscle guarding
Nerve sensitivity
Central pain amplification

Non-Medication Tools

Heating pads for muscle tightness
Ice for acute swelling or injury
Magnesium glycinate (if tolerated)
Epsom salt baths
Gentle myofascial release with foam rollers or massage balls
TENS units (transcutaneous electrical nerve stimulation)

Pacing Strategy

Avoid the “boom and bust” cycle:

Do not overdo activity on good days.
Break tasks into smaller intervals.
Use timers.
Plan rest before exhaustion.

4. Managing Fatigue

Fatigue in hEDS is real and physiologic.

Common contributors:

Autonomic dysfunction (e.g., POTS)
Poor sleep
Chronic pain
Deconditioning

Energy Conservation Strategies

Sit instead of stand when possible.
Use shower chairs.
Batch errands.
Schedule demanding tasks earlier in the day.
Build recovery time into your week.

5. Orthostatic Symptoms (Lightheadedness, POTS)

Many people with hEDS experience autonomic dysfunction.

Postural orthostatic tachycardia syndrome (POTS) is common in hypermobility.

Helpful Strategies

Increase fluids (2–3 liters/day unless restricted).
Increase salt intake (if approved by your clinician).
Wear compression stockings (20–30 mmHg).
Avoid long hot showers.
Rise slowly from seated positions.
Elevate the head of your bed slightly.

If symptoms are severe (fainting, sustained heart rate >120 upon standing), seek medical evaluation.

6. GI & Nutrition Support

Digestive symptoms are common.

Helpful strategies:

Smaller, more frequent meals
Adequate protein intake
Soluble fiber (oats, chia, flax) as long as you don’t have gastoparesis
Electrolyte drinks if orthostatic symptoms present
Avoid large carb-heavy meals if prone to lightheadedness
Pairing carbs with protein and fat

If there is:

Persistent vomiting
Severe weight loss
Blood in stool
Inability to maintain nutrition

Seek medical care.

7. Sleep Optimization

Poor sleep worsens pain sensitivity.

Sleep Tips

Keep consistent sleep/wake time.
Avoid screens 60 minutes before bed.
Magnesium at night (if tolerated).
Use supportive pillows to stabilize joints.
Try body pillows to prevent shoulder/hip collapse.

If you snore loudly, wake gasping, wake up with headaches, have to urinate in the middle of the night frequently, desire to take naps, find yourself “crashing” in afternoons, find sleep unrefreshing, never wake up rested, or other sleep symptoms, ask about sleep apnea evaluation.

8. Mental Health & Nervous System Regulation

Living with a chronic connective tissue disorder can be emotionally taxing.

Common experiences:

Medical trauma
Feeling dismissed
Anxiety about injury
Grief about limitations

Helpful tools:

Trauma-informed therapy
Somatic regulation techniques
Breathwork (4-7-8 breathing)
Vagus nerve stimulation exercises
Gentle yoga (within mid-range only)
Peer support groups

Your experience is valid. You are not “lazy” or “dramatic.”

9. When to Seek Urgent Care

Go to urgent care or emergency care if you have:

Sudden severe chest pain
New neurologic symptoms (weakness, speech difficulty)
Uncontrolled bleeding
Severe new headache with neurologic changes
Suspected fracture

Routine flares can often be managed at home with rest, bracing, and pacing.

10. Building Your Care Team

Helpful providers may include:

Primary care
Physical therapist familiar with hypermobility
Autonomic specialist/ cardiologist/ neurologist
GI specialist
Mental health provider

Not all providers are knowledgeable about hEDS. You deserve collaborative care.

Final Encouragement

Self-management with hEDS is not about “pushing through.”
It is about:

Stability
Consistency
Gradual strengthening
Nervous system regulation
Self-compassion

Progress may be slow — but it is absolutely possible.

Hypermobility_ Patient Handout to Providers (2).pdf

Handout on Hypermobility for Providers & Patient Advocacy

Hello, Provider! I have been diagnosed with hypermobility syndrome. Here are some things you may want to be aware of even if you are not the one treating my connective tissue disorder:

Surgical/ Procedure complications

Orthopedic procedures on soft tissue like tendons, ligaments, muscles, bursa may be less effective than expected, can cause damage even with gentle technique, and problems may be more likely to recur
Skin and soft tissues may not hold stitches well, and scars may stretch or widen over time
Poor wound healing, infection, and scarring are more likely
Steroid injections carry a higher risk of infection, tendon rupture, poor wound healing, and worsening joint instability
Eye surgeries or procedures are more likely to fail or problems to recur
Joint or spinal stabilizing procedures are more likely to fail and problems more likely to recur including recurrent subluxation/dislocation, infection, poor wound healing
Gastrointestinal surgeries are more likely to have poor tissue healing, spontaneous perforation, and bleeding.
Hernia or uterine/rectal prolapse surgeries are more likely to have complications or fail

Medication complications/ side effects

Estrogen can worsen joint hypermobility leading to joint damage, consider alternatives for contraception, treatment for menopause
Fluoroquinolone antibiotics are more likely to cause tendon rupture and other problems
Local anaesthetics may not work at all, may wear off sooner, or I may need more medicine to become numb

Comorbidities

The following comorbidities are more likely in people with hypermobility and EDS, please consider these:
Autism/ADHD
Pelvic organ prolapse
Mast cell activation syndrome
Dysautonomia/ POTS
Migraine
Gastroparesis
Endometriosis
Neuropathy
Fibromyalgia
Craniocervical instability
Chiari malformation
Sleep apnea
Autoimmune connective tissue disorders like lupus, rheumatoid arthritis, ankylosing spondylitis
Thoracic outlet syndrome

References:

The Ehlers-Danlos Syndromes.
Malfait F, Castori M, Francomano CA, et al. Nature Reviews. Disease Primers. 2020;6(1):64. doi:10.1038/s41572-020-0194-9.
Ehlers-Danlos syndrome.
National Library of Medicine (MedlinePlus)
Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.
Yew KS, Kamps-Schmitt KA, Borge R. American Family Physician. 2021;103(8):481-492.
Hypermobile Ehlers-Danlos Syndrome.
Hakim A GeneReviews® [Internet]. Updated 2024 Feb 22.
Extracutaneous Features and Complications of the Ehlers-Danlos Syndromes: A Systematic Review.
Doolan BJ, Lavallee ME, Hausser I, et al. Frontiers in Medicine. 2023;10:1053466. doi:10.3389/fmed.2023.1053466.
Recognizing and Effectively Managing Hypermobility-Related Conditions.
Russek LN, Stott P, Simmonds J. Physical Therapy. 2019;99(9):1189-1200. doi:10.1093/ptj/pzz078.
Masterclass: Hypermobility and Hypermobility Related Disorders.
Simmonds JV. Musculoskeletal Science & Practice. 2022;57:102465. doi:10.1016/j.msksp.2021.102465.
Orthopaedic Manifestations in Hypermobile Ehlers-Danlos Syndrome.
Eichinger JK, Byrd RL, Bailey EP, et al. The Journal of Bone and Joint Surgery. American Volume. 2025;:00004623-990000000-01511. doi:10.2106/JBJS.24.01106.
Orthopedic Considerations and Surgical Outcomes in Ehlers-Danlos Syndromes.
Yonko EA, LoTurco HM, Carter EM, Raggio CL. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics. 2021;187(4):458-465. doi:10.1002/ajmg.c.31958.