Charcot-Marie-Tooth disease - Treating 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 will need to be assessed regularly to check for any new developments in your condition. How often you are assessed will depend 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). You will usually have a doctor who co-ordinates 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 is a lack of good quality medical research into the benefits of exercise for people with CMT. However, it is possible that some types of exercise are beneficial. For example:

• strengthening exercises that focus on improving muscle strength, such lifting weights, may help improve overall strength and reduce 'foot drop' (the inability to lift the foot and toes properly when walking)
• aerobic exercise, which raises your heart rate and makes you breathe harder, such as walking or swimming, may improve your fitness and your ability to function on a day-to-day basis
• posture and balance exercises, such as yoga, may also have benefits

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 symptoms worse if you don't follow proper instructions or if you over-exert yourself.

Speak to your GP or physiotherapist about arranging a suitable exercise programme that will allow you to pace yourself. Read more information about the benefits of exercise.

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 that has 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 is unusual to completely lose the ability to walk, but you may benefit from using a wheelchair occasionally. Moving around can be difficult if you have CMT and using a wheelchair every now and again can give 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:

• try to maintain a healthy weight because being overweight can make moving around more difficult and put more strain on your body
• take good care of your feet – make sure you check and clean your feet regularly, as there is a risk of injury and infection if you have reduced sensation in your feet
• avoid drinking too much alcohol as this has many health risks, which may be worse if you have CMT
• avoid caffeine (found in tea, coffee and cola) and nicotine (found in tobacco) if you have tremors (shaking), as they can make this worse
• avoid medicines that can cause nerve damage – CMT 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 two 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 anti-convulsant medication (a medicine often used to prevent seizures). These medications were not originally designed to be painkillers, but there is evidence to suggest they are effective in treating long-term nerve pain in some people.  

Surgery

If CMT causes significant deformities, surgery may be needed to correct them. Some of the types of surgery that may be carried out are described below. 

Osteotomy

An osteotomy is a surgical procedure used to correct severe flatness of the feet. An incision (cut) 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 can also be used to correct flat feet, as well as relieve joint pain and correct heel deformities. It involves fusing the three main joints in the back of your feet to strengthen your feet, correct their shape and relieve pain.

After surgery, your foot (or feet) will be placed in plaster, and you will not be able to place any weight on them for six weeks. During this time, you will need to use crutches or a wheelchair.

Once you can put weight on your feet, you will need to wear the cast for another six weeks (12 weeks in total). However, 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 will need to wear a cast for three 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 required. Read more about treating scoliosis.

Research into treatments

There is some promising research that may provide new ways of treating people with CMT. This research includes:

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

Research looking into whether ascorbic acid (vitamin C) could help people with CMT has recently been carried out, but unfortunately no evidence of a benefit was found.

Speak to your care team if you are interested in taking part in a clinical research trial. You can also search for CMT clinical trials to see what research is currently being carried out.