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Many people with dystonia say that their main problem is the pain that they experience. The degree of pain associated with dystonia tends to vary greatly from person to person, from no pain to severe pain. In many cases, treatments that address the dystonic contractions and spasms may also sometimes help to relieve the pain. Botulinum toxin injections and muscle relaxant medications may be quite effective at reducing pain.
Classifying the type of pain you have is the first step to make, allowing you or your Consultant/GP to choose the correct pain killer/reliever, and achieving better pain management. Many chronic pain syndromes such as dystonia are made up of different types of pain, and therefore combining medicines from different appropriate groups can help improve pain relief.
There are two basic forms of physical pain: acute and chronic:
- Acute pain: for the most part, results from disease, inflammation, or injury to tissues. It is immediate and usually of a short duration. Acute pain is a normal response to injury and may be accompanied by anxiety or emotional distress. The cause of acute pain can usually be diagnosed and treated.
- Chronic pain: is continuous pain that persists for more than 3 months, and beyond the time of normal healing. It ranges from mild to severe and can last weeks, months, or years to a lifetime. The cause of chronic pain is not always evident, although it can be brought on by chronic conditions such as arthritis and dystonia. Chronic pain can often interfere with a persons quality of life, sleep, and productivity. Dystonia usually falls within this form of pain.
Doctors have identifed two different types of pain:
Nociceptive Pain arises from the stimulation of specific pain receptors. These receptors can respond to heat, cold, vibration, stretch and chemical stimuli released from damaged cells. As dystonia affects motor operations, most pain experienced by people with dystonia is nociceptive.
- Source - tissues such as skin, muscle, joints, bones, and ligaments - often known as musculo-skeletal pain.
- Characteristics - often sharp and well localised, and can often be reproduced by touching or moving the area or tissue involved.
- Useful Medications - may respond to combinations of Paracetamol, Weak Opioids OR Strong Opioids, and NSAIDs such as ibuprofen
Neuropathic Pain arises from damage to the nerves themselves. There is always the possiblility of neuropathic pain especially in secondary dystona.
- Source - from within the nervous system itself - also known as pinched nerve, trapped/irritated nerve. The pain may originate from the peripheral nervous system (the nerves between the tissues and the spinal cord), or from the central nervous system (the nerves between the spinal cord and the brain) –
- Characteristics - People often describe nerve pain is as shooting, burning, electric shocks and hypersensitive. You may experience pins and needles, areas of numbness and heat.
- Useful Medications - only partially sensitive to paracetamol, NSAIDs, Opioids. More sensitive to Anti-depressants, Anti-convulsants, Anti-arrhythmics, and NMDA Antagonists. Topical Capsaicin, may be helpful.
Chronic Pain management may have physical and emotional benefits. Chronic pain's emotional effects include depression, anger, anxiety, and fear of reinjury which may hinder the ability to return to work or once enjoyable activities. The emotional toll of chronic pain may make pain worse. Anxiety, stress, depression, anger and fatigue interact in complex ways with pain and may decrease the body's production of natural painkillers; moreover, such negative feelings may increase the level of substances that amplify sensations of pain, causing a vicious cycle of pain.
If you or someone you know suffers from chronic pain associated with their dystonia, it is important to get help. There are many effective treatments available to relieve pain.
If you suffer from chronic pain, the first thing to do is to see a doctor and get treated.
In addition to the medications metioned above, other ways of controlling pain include:
- TENS machines (Transcutaneous Electrical Nerve Stimulation) are small devices that apply a weak electric current through the skin to relieve pain from muscle exertion.
- Muscle relaxants: Botulinum toxin is now being used for pain relief being injected into nerves causing pain rather than into the muscles causing spasms
- Epidural injections can be used to introduce pain relief (or nerve root blocks to temporarily disable muscles) at the cervical, thoracic or lumbar levels and are effective for short term relief.
- Spinal cord stimulators deliver pain relieving drugs directly to specific nerve groups. These (small) devices are sometimes implanted into the body or placed close to the surface to deliver constant dosages over many months. This technique is often used to help children affected by serious dystonia to deliver baclofen via spinal chord stimulation.
- Physiotherapy with a programme of associated exercise.
- Techniques to reduce tissue swelling include ultrasound or hydrotherapy, massage or myofascial relief.
- Cognitive behavioural therapy (CBT
Other steps that can make living with chronic pain more tolerable include the following:
- Learn how to relax through deep breathing and other stress management techniques.
- Set achievable goals and don't over do it on good days; learn to pace yourself.
- Engage in positive self-talk (statements that reaffirm positive qualities).
- Build in rest, exercise, and relaxation times in your daily schedule.
- Make sure than you have seen either your GP or a Pain Consultant to seek help with managing your pain
- Decrease or eliminate alcohol consumption. Pain often disrupts sleep and alcohol may further disrupt the sleep cycle.