Treatment - Charcot-Marie-Tooth disease

There's no cure for Charcot-Marie-Tooth disease (CMT), but therapies are available to help reduce your symptoms and enable you to live as independently as possible.

As CMT gets worse over time, you'll need to be assessed regularly to check for any changes in your condition.

How often you're assessed depends on the type of CMT you have and the severity of your symptoms.

Your treatment programme may involve a number of healthcare professionals working together in a multidisciplinary team (MDT).

A doctor will usually co-ordinate your treatment programme, and makes sure every aspect of your condition is closely monitored and treated if necessary.

Physiotherapy

Physiotherapy is one of the most important therapies for improving the symptoms of CMT and reducing the risk of muscle contractures, where muscles shorten and lose their normal range of movement.

Physiotherapy uses physical methods, such as massage and manipulation, to promote healing and wellbeing.

It usually involves low-impact exercises such as stretching, swimming and moderate weight training.

There's a lack of good-quality medical research into the benefits of exercise for people with CMT, but it's possible that some types of exercise are beneficial.

For example:

• strengthening exercises that focus on improving muscle strength, such as lifting weights, may help improve overall strength and reduce foot drop
• aerobic exercise, such as walking or swimming, which raises your heart rate and makes you breathe harder, may improve your fitness and your ability to function on a day-to-day basis
• posture and balance exercises, such as yoga, may also be beneficial

Any exercise needs to be carefully planned as part of a personalised exercise programme.

A certain level of exercise may be safe, but you risk making your symptoms worse if you do not follow proper instructions or overexert yourself.

Speak to your GP or physiotherapist about arranging a suitable exercise programme that will allow you to pace yourself.

Occupational therapy

Occupational therapy involves identifying problem areas in your everyday life, such as dressing yourself, then working out practical solutions.

Occupational therapy will be useful if muscle weakness in your arms and hands makes it difficult for you to do day-to-day tasks, such as dressing or writing.

An occupational therapist will teach you how to use adaptive aids to compensate for your difficulties, such as clothing with clasps instead of buttons and magnetic tubes that allow you to pick up objects.

Orthoses and walking aids

Orthoses are devices worn inside your shoes or on your legs to improve the strength and functionality of your limbs, or to correct your gait (the way you walk).

There are several different types of orthoses, including:

• insoles in your shoes
• custom-made shoes that support your ankles
• ankle or leg braces
• thumb splints that can improve your hand strength

It's unusual for a person with CMT to completely lose the ability to walk.

But moving around can be difficult, so using a wheelchair every now and again can help by giving you a chance to rest.

Taking care of yourself

In addition to the treatment you receive, there are some general precautions you can take to avoid further problems.

These may include:

• trying to maintain a healthy weight – being overweight can make moving around more difficult and put more strain on your body
• taking good care of your feet – make sure you check and clean your feet regularly, as there's a risk of injury and infection if you have reduced sensation in your feet
• avoiding drinking too much alcohol – this has many health risks, which may be worse if you have CMT
• avoiding caffeine (found in tea, coffee, cola and energy drinks) and nicotine (found in tobacco) if you have tremors (shaking) – they can make this worse
• avoid medicines that can cause nerve damage – Charcot-Marie-Tooth UK has a list of medications to avoid or use with caution if you have CMT

Ask your MDT if they have specific lifestyle advice for you, as risks may vary from person to person.

Controlling pain

There are 2 types of pain associated with CMT:

• joint and muscle pain – caused by the stresses that CMT places on your body
• neuropathic pain – caused by damage to your nerves (this is less common)

Joint and muscle pain can usually be controlled by taking non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen.

Neuropathic pain may be treated with tricyclic antidepressants (TCAs) or an anticonvulsant medication (a medicine often used to prevent seizures).

These medications were not originally designed to be painkillers, but there's evidence to suggest they're effective in treating long-term nerve pain in some people.

Surgery

If CMT causes significant deformities, surgery may be needed to correct them.

Osteotomy

An osteotomy is a surgical procedure used to correct severe flatness of the feet.

A cut (incision) is made in your foot and the surgeon removes or repositions the bones in your foot to correct its shape.

After surgery, your foot (or feet) will need to be kept in plaster for several weeks until the bones have healed.

Arthrodesis

Arthrodesis involves fusing the 3 main joints in the back of your feet to strengthen your feet, correct their shape and relieve pain.

It can be used to correct flat feet and heel deformities, and relieve joint pain.

After surgery, your foot (or feet) will be put in plaster, and you will not be able to place any weight on them for 6 weeks.

During this time, you'll need to use crutches or a wheelchair.

Once you can put weight on your feet, you'll need to wear the cast for another 6 weeks (12 weeks in total).

But it may take up to 10 months for you to fully recover from the operation.

Plantar fascia release

Plantar fascia release is a surgical procedure used to relieve persistent heel pain caused by inflamed tendons. Tendons are the fibrous cords that join bones to muscle.

During the procedure, part of the tendon is removed and the remaining tendon repositioned and allowed to heal.

Afterwards, you'll need to wear a cast for 3 weeks and will not be able to put any weight on your feet during this time.

Spinal surgery

Although abnormal curvature of the spine (scoliosis) can often be treated using a back brace, corrective surgery may be needed.

Find out more about treating scoliosis

Research into treatments

There's some promising research that may provide new ways of treating people with CMT.

This research includes:

• using stem cells (cells at an early stage of development) to repair nerve damage
• using hormones (powerful chemicals) and gene therapy to slow the progression of the condition

Speak to your care team if you're interested in taking part in a clinical trial.

You can also read more about current research on the Charcot-Marie-Tooth UK website.

Living with CMT

Living with CMT can be challenging. The condition can have an impact on many aspects of your life.

These include:

• driving and getting around
• employment and finances
• holidays and leisure activities
• your emotional health

Charcot-Marie-Tooth UK can provide help and support.

Their helpline is 0300 323 6316 (weekdays 9am to 2pm), or you can email enquiries@cmt.org.uk.