What is transverse myelitis?
Transverse myelitis is a rare condition of the central nervous system involving inflammation in the spinal cord. ‘Transverse’ refers to the inflammation being across the width of the spinal cord though often it may not affect the whole width. The word myelitis is derived from Greek words ‘myelos’ (spinal cord) and ‘itis’ (inflammation). The inflammation impairs messages (nerve impulses) travelling along the spinal cord.
It is common for people with transverse myelitis to experience some form of pain. This can be constant pain, or pain that comes and goes. The pain might be related to physical problems such as muscle spasms or strains, or related to the injury in the spinal cord (musculoskeletal pain). Messages (nerve impulses) might not be able to travel properly within the spinal cord, confusing the brain and causing it to interpret them as pain signals. People with transverse myelitis may also experience numbness, neuropathic pain and/or musculoskeletal pain (including gait disturbances and spasticity).
Neuropathic pain is hard to describe and is different for everyone. It can include a range of sensations such as burning, tingling, shooting, searing, stabbing or electric shock type feelings. It may be worse at night. It can also cause a range of associated symptoms including insomnia, anxiety, depression and weight changes. It is often difficult to find the cause of neuropathic pain, but the aim of the treatments is to reduce the pain.
Neuropathic pain is caused when the nerves within the peripheral or central nervous system are injured in some way and incorrect signals are sent to the brain, which leads to continuous chronic pain. ‘Neuro’ means nerves and ‘pathy’ means abnormality.
If you are experiencing neuropathic pain (pain caused by damage or disease affecting the nervous system) ordinary pain medication (e.g ibuprofen and paracetamol) may not be effective. However, there are other medications and non-drug approaches which may be helpful.
The main medications recommended for neuropathic pain include amitriptyline, gabapentin, pregablin, duloxetine and tramadol.
Other treatments for neuropathic pain can include management programmes, acupuncture and other complementary or alternative therapies, such as reflexology and aromatherapy. It may be possible to attend a pain clinic for assessment, management and advice on living with chronic pain. For more information speak to your GP or consultant.
The type of treatment that suits you will depend on the type of pain you are experiencing. Often a trial and error approach can help to find the most effective treatment for you.
For more information on any of the treatments available speak to your doctor. If the medication isn’t effective or you experience unpleasant side effects, your GP may refer you to a pain clinic or neurologist.
People who experience these problems may find physiotherapy beneficial.
Bladder and bowel problems
It is common for people to have problems with their bladder or bowel after transverse myelitis due to the disruption of signals between the brain and bladder/bowel.
Bladder symptoms include not being able to empty bladder (retention), having to empty bladder as soon as the urge comes (urgency), having to empty bladder a lot (frequency) and emptying bladder at night (nocturia). There are medications that can help control the bladder and you might need to learn to self-catheterise to empty your bladder. There are new treatments (such as botox treatment for spastic bladder) available for bladder problems.
The most common bowel problem is constipation due to reduced mobility and sensation. Sometimes diarrhoea (or overflow) may be a problem. You may discuss with your GP if it’s necessary for you to be referred to your local continence adviser or nurse for an initial assessment and advice on managing the symptoms.
Following transverse myelitis, people may experience sexual problems including decreased libido, erectile and ejaculatory dysfunction and pain in men. Women may have decreased arousal, lack of vaginal lubrication, lack of sensation, anorgasmia and pain. These can be made worse by physical symptoms such as spasticity, bladder or bowel incontinence, or due to medication side effects and problems as a result of psychological factors.
It can be difficult to talk about sexual problems, but it is important to communicate your feelings to your partner. You may find it helpful to discuss your sexual problems and concerns with a neurologist, your GP or a counsellor. Other things that may help include medication and alternative approaches.
Fatigue is an overwhelming sense of tiredness, with no obvious cause. You may find that you become extremely tired after little activity, wake up feeling as tired as when you went to sleep, experience heavy limbs and a temporary worsening of your symptoms. Fatigue can have a profound effect on you and you may find that you become very tired after everyday activities.
Fatigue affects people in different ways, and how it affects you may change over time. It can also be very difficult to explain what you are experiencing to other people. You may also experience good and bad days, which can be confusing.
People with transverse myelitis may experience fatigue due to the condition itself, symptoms related to the condition, medication and/or other medical conditions.
There are things that can help you to manage your fatigue. Planning and prioritising what you need to do can help, especially if you include periods of rest. It is important to pace yourself, to try and listen to your body. Try to be realistic about what you can do and what you need to achieve. You could ask friends and family to help you with certain things, if necessary. You may find it helpful to return slowly to your usual everyday activities rather than trying to do too much too soon.
It is important to pace the activities you do throughout the day and take regular short rests. Exercise can help your body and improve strength, fitness and mood, so you may find a gentle exercise such as walking or swimming helpful. A healthy diet and a good fluid intake will help to improve your mood and help with your fatigue. Meditation is another approach which many people find helpful.
There are lots of things which can also worsen your fatigue, such as sleep disturbances, emotional upset, pain, infection or medication. Everyone is different and you are likely to experience good and bad days. It is important to listen to your body and not put too much pressure on yourself.
People find it difficult coming to terms with the impact of transverse myelitis on their lives. You might feel tearful, angry, anxious or depressed. These are all normal reactions to a life-changing experience. Many people find that as time goes by and they begin to adapt to their situation, they start overcoming these feelings.
However, if you have ongoing feelings of sadness, lack of motivation, lack of self-esteem and self-worth it may be that you are experiencing depression. You may feel a sense of hopelessness, but there is treatment available to support people with depression. It is important to seek help and support if you think you are depressed.
It can be hard to express and explain to others how you feel and what you are experiencing especially as you might appear to have made a good physical recovery or be coping well. This can lead to feelings of isolation. It may help to talk to a friend or relative about how you are feeling rather than keeping things bottled up. You can also speak to your GP about treatment such as medication, cognitive behavioural therapy (CBT) or counselling.