We are currently under development. Please don't submit any requests at this point in time. The site goes live on 1 November 2026.

Registered charity to be confirmed

Text size
The Beyond Pain Foundation

Conditions we support

Conditions guide

Muscular dystrophy and muscle-wasting conditions

Muscular dystrophy is a group of rare, mostly inherited conditions that make muscles weaker over time. Many people also live with pain, cramps and tiredness. This guide explains the main types, how they change over time, the treatments and specialist care available in the UK, and your rights at work.

People in the UK with a muscle-wasting condition
More than 110,000
Different muscle-wasting conditions
Over 60
Most conditions
Get worse slowly over years
Cure
None yet, but symptoms can be managed

This guide is general information, not medical advice. Medicines and treatments must be prescribed or recommended for you by a doctor or pharmacist. We do not give doses here.

What muscular dystrophy is

Muscular dystrophy (MD) is the name for a group of rare conditions that cause muscles to weaken and waste away over time. They are caused by changes in genes that the body needs to build and repair muscle. Most are inherited, but some happen for the first time in a family.

MD is part of a wider family of muscle-wasting and neuromuscular conditions. Muscular Dystrophy UK supports people with over 60 of these conditions, affecting more than 110,000 children and adults in the UK.

Some types start in early childhood. Others don't show until adult life. As well as the arms and legs, some types affect the heart, breathing, swallowing or spine.

Weakness is the main symptom, but many people also have pain. It can come from cramps, stiff joints, a curved spine, poor posture, or the strain of using weaker muscles to do everyday things.

Types of muscular dystrophy

There are many types. These are some of the more common ones. Your specialist can tell you which type you have and what it is likely to mean for you.

Duchenne (DMD)

Mainly affects boys and starts in early childhood. Weakness starts in the hips and thighs. Many need a wheelchair from around 8 to 11. It affects the heart and breathing over time. People now often live into their 40s and 50s.

Becker (BMD)

Similar to Duchenne but milder and slower, because the body makes some of the missing protein. Cramps during exercise can be an early sign. It can affect the heart at any age.

Myotonic dystrophy

One of the most common types to start in adult life. Muscles are weak and slow to relax after use. It can also affect the heart rhythm, breathing, sleep, digestion, eyes (cataracts) and concentration. It usually progresses slowly.

Facioscapulohumeral (FSHD)

Affects the face, shoulders and upper arms, and later can spread to the legs and trunk. It usually shows in early adulthood. Long-term pain in the neck, shoulders and lower back is common.

Limb girdle (LGMD)

Many different types that affect the hip and shoulder muscles. It can start at any age from childhood to middle age. Muscle pain, cramps, stiff joints and back pain from a curved spine can occur.

Oculopharyngeal (OPMD)

Usually starts in later adult life. It causes drooping eyelids and difficulty swallowing, and sometimes weakness in the arms and legs.

Emery-Dreifuss (EDMD)

Causes tight joints at the elbows, ankles and neck, with weakness in the arms and legs. It can cause serious heart rhythm problems, so regular heart checks are vital.

Congenital (CMD)

A group of types that are present at or soon after birth. How severe they are varies a lot.

Symptoms and how they progress

Early signs can include difficulty walking, climbing stairs or lifting things, falling more often, muscle pain and tight joints. How fast things change depends on the type. For most adult-onset types, change happens slowly, over years or decades.

  1. Early stage

    First signs

    Tiring easily, cramps, trips and falls, or trouble with stairs, lifting or raising your arms.

  2. Over years

    Weakness spreads

    More muscles become involved. Joints can tighten (contractures) and pain from strain and posture often increases.

  3. Varies by type

    Mobility changes

    Some people need walking aids or a wheelchair. In severe limb girdle types this can be 10 to 30 years after symptoms start. In milder types, it may never happen.

  4. Any stage

    Heart and breathing

    Some types affect the heart or breathing muscles. Regular checks can catch problems early, often before you notice them.

Timings are broad ranges and vary greatly between types and between people, even in the same family.

Common causes of pain in muscle-wasting conditions include:

  • Muscle cramps
  • Tight joints (contractures)
  • A curved spine (scoliosis)
  • Shoulder blade and neck strain
  • Low back pain
  • Overuse of stronger muscles
  • Poor seating or posture
  • Falls and injuries
  • Poor sleep

When to get urgent help

Call 999 or go to A&E if

  • you are struggling to breathe, or breathing is much worse than usual
  • you have chest pain, fainting or a very fast or irregular heartbeat
  • you are choking or can't swallow
  • you are very drowsy or confused and hard to wake

Call NHS 111 if

  • you have a chest infection, a bad cough or can't clear phlegm
  • you feel breathless when lying flat
  • you have palpitations or feel dizzy
  • you have a fall and are in a lot of pain

See your GP if

  • you wake with headaches or feel very sleepy in the day, which can be a sign of weak breathing at night
  • pain, cramps or weakness are getting worse
  • you are coughing or choking when eating
  • you feel low or anxious

Carry an alert card

Some muscle-wasting conditions can make certain anaesthetics dangerous, and can affect the heart and breathing. Always tell a doctor, dentist or surgeon about your condition. Muscular Dystrophy UK offers free alert cards for many conditions that you can show in an emergency.

Diagnosis and referral

MD can be hard to diagnose from symptoms alone. If your GP suspects a muscle condition, they will refer you to a neurologist or a specialist neuromuscular service.

Tests can include blood tests to check for muscle damage, genetic tests, tests of how your nerves and muscles work (electromyography), an MRI scan, and sometimes a small sample of muscle (biopsy). Knowing your exact type matters, because it guides which heart, breathing and other checks you need.

There are specialist neuromuscular centres across the UK, such as centres in London, Newcastle, Liverpool and Salford. Some areas also have neuromuscular care advisors, who help you find your way through services. Muscular Dystrophy UK keeps a list of local services.

Up to 18 weeks

The maximum NHS waiting time in England from referral to starting consultant-led treatment, for non-urgent care. Specialist neuromuscular clinics can have longer waits in some areas.

Treating pain

There is no cure for MD yet, but treatment can ease symptoms. Pain is often best managed by treating the cause, such as tight joints or poor posture, together with medicines and therapy.

Simple painkillers

From a pharmacy, or prescribed by your GP

Paracetamol and anti-inflammatories such as ibuprofen. If you are underweight or take other medicines, ask a pharmacist which painkiller and amount is safe for you.

Medicines for cramps or stiffness

Prescription, often advised by your specialist

Some people with myotonia (slow muscle relaxing) or cramps are offered medicines to ease this. Your specialist will check your heart first, as some of these medicines can affect heart rhythm.

Nerve pain medicines

Prescription

For burning or shooting pain. These usually take a few weeks to have their full effect.

Steroids

Specialist neuromuscular team

Used mainly for Duchenne to slow muscle weakness. Newer steroid-type medicines may have fewer side effects. These are not painkillers but can help keep you stronger for longer.

Heart and breathing treatment

Cardiology and respiratory teams

Heart medicines, pacemakers, and machines that support breathing at night. Better breathing and sleep often improve tiredness and morning headaches.

Surgery

Orthopaedic or spinal surgeon

For a curved spine or very tight joints that cause pain or problems with sitting. Recovery takes several months.

Check before taking strong painkillers or sedatives

Opioid painkillers and some sleeping or calming medicines can slow breathing. This matters more if your condition affects your breathing muscles. Always tell the prescriber about your condition, and don't stop regular medicines suddenly without advice.

Specialist and rehab services

A team of health professionals usually works together to help. Ask your GP or neuromuscular team to refer you.

  1. Physiotherapy

    Ongoing, with reviews every few months

    Stretches to slow joint tightening, gentle exercise to keep you moving and advice on avoiding overwork. Hydrotherapy can help at all stages. The NHS says physio can relieve pain as well as help movement.

  2. Occupational therapy

    Assessment, then follow-up as needs change

    Ways to do daily tasks with less strain, plus equipment such as perching stools, grab rails or stair lifts. Your council can also assess you for home adaptations.

  3. Orthotics and wheelchair services

    Waits vary from weeks to months

    Splints, such as ankle-foot orthoses for foot drop, help you walk with less effort. Wheelchair services assess seating and posture, which can greatly ease back and neck pain.

  4. Heart, breathing and pain clinics

    Regular checks, often yearly, depending on type

    Some types need regular heart and breathing tests, starting at diagnosis. If pain is hard to control, a pain clinic can offer other medicines and pain management programmes.

Self-help

Easing pain and cramps

  • Do your stretches every day, as your physio shows you
  • Use warmth on aching muscles
  • Change position often and use good support
  • Avoid pushing muscles to the point of exhaustion
  • Keep a pain and fatigue diary to spot patterns

Living well

  • Stay active at a level that suits you
  • Pace tasks and plan rest before you need it
  • Keep a healthy weight to reduce strain
  • Have the flu and other vaccines you are offered
  • Talk to others with your condition for support

Getting the best care

Tips for appointments

  • Make sure you know your exact type of muscle-wasting condition
  • Ask if you should be seen at a specialist neuromuscular centre
  • Ask how often your heart and breathing should be checked
  • Ask your team for a written care plan you can share with your GP
  • Carry an alert card and keep a list of your medicines
  • Mention pain directly. It is sometimes overlooked because weakness is the main symptom

Muscle-wasting conditions and work

Muscular dystrophy usually counts as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). Conditions that get worse over time are covered, often from an early stage, as long as they have some effect on daily life.

If your employer knows, or should know, they must make reasonable adjustments. These might include:

  • An ergonomic chair with arm and neck support
  • A sit-stand or height-adjustable desk
  • Arm supports and lightweight keyboards
  • Voice recognition software
  • A parking space close to the entrance
  • Moving your work to the ground floor
  • Flexible hours and working from home
  • Time off for clinic appointments

Access to Work is a government grant that can pay for equipment, a support worker or taxis to work if you can't use public transport. It doesn't have to be paid back. For advice on your rights, contact Acas or Citizens Advice.

Benefits

Depending on how your condition affects you, you may be able to get Personal Independence Payment (PIP), or Adult Disability Payment in Scotland, Universal Credit, Employment and Support Allowance or Statutory Sick Pay if you are off work. PIP can be paid whether or not you work. Turn2us and Citizens Advice can help you check.

How The Beyond Pain Foundation can help

If NHS waits are too long, or the help you need isn't available to you on the NHS, we may be able to fund:

  • A private assessment with a neuromuscular or pain specialist
  • A course of physiotherapy or hydrotherapy from a registered therapist
  • Splints or orthotics recommended by your clinician
  • Mobility and daily living aids recommended by an occupational therapist
  • Workplace or home equipment, such as an ergonomic chair, sit-stand desk or arm supports

We fund treatment, equipment and support, not general living costs. Prices vary, so always get a written quote to include with your application.

Apply for funding Check the requirements

Support and sources

Muscular Dystrophy UK

Charity for muscle-wasting conditions

Helpline 0800 652 6352. Information on over 60 conditions, alert cards, and a directory of specialist services.

musculardystrophyuk.org

Scope

Disability equality charity

Helpline 0808 800 3333, Monday to Saturday, 10am to 5pm. Advice on work, benefits and equipment.

scope.org.uk
Sources for this guide

Last reviewed: October 2026.