1. Managing Pain

2. What is pain? Pain is our body’s warning system. It alerts us to damage or injury so that we can stop more damage and focus on healing. Pain isn’t just a physical experience. The experience of pain is a complex interaction between how your body feels, how much you feel able to cope and what you do. Pain can be caused by damage to soft tissue e.g. skin or muscles, or bones, or by the damage to the nerves in the spinal cord itself. Following SCI its common to experience pain from a combination of these factors.

3. Two types of pain Acute pain: This is our normal experience of pain. It is our body’s warning and protection system. Acute pain stops as healing occurs. Chronic or persistent pain: In some cases pain continues even after healing. Unfortunately pain can sometimes happen from nerve damage after SCI, which can last for a long time. We can only understand someone’s pain by their descriptions of it. There is no way to measure pain like using a thermometer to measure temperature. Your description of pain is important in helping to diagnose what is causing your pain and how to treat it. It is helpful to say how it feels (e.g. aching or stabbing), where it hurts, when pain happens, and what makes it better or worse. Describing pain

4. Damage to bones/soft tissue This type of pain is often described as a dull, aching or throbbing pain. It is usually confined to one specific area and usually eases as healing occurs. After SCI there are some common types of pain: Musculoskeletal pain occurs in muscles and joints, often shoulder, wrist and elbow joints. Visceral pain (i.e. pain affecting internal organs). This most commonly occurs in the abdominal area and could be caused by constipation, bladder infection, ulcers, or appendicitis.

5. Headache - Autonomic Dysreflexia This is a specific pain problem that can affect people with a SCI injury at level T6 or above. The headache is more intense than a common headache and is caused by a rise in blood pressure. It can be understood as the body’s emergency response to damage in an area where there is no sensation. This symptom should always be taken seriously. Before taking medication (Nifedipine) try and identify the cause so that you can alleviate the symptoms. Common causes are: blocked catheter, constipation, a broken bone, ingrowing toenail, pressure ulcer, pressure sore, menstrual problems.

6. Neuropathic pain after SCI This is the name given to the type of pain caused by damage to the nerves in the spinal cord Neuropathic pain can occur at different sites: Commonly it occurs around the borders where you have sensation, just above or at the level of your spinal cord injury. But it can also occur below the level of the spinal cord injury (even if you have no sensation)

8. Common things about neuropathic pain at or above your level of spinal cord injury: Most commonly occurs where you start to have normal skin sensation. If you have a cervical spinal cord injury this may feel like burning or numbing pain that spreads over your shoulders, arms and hands. If you have a thoracic spinal cord injury this may feel like vice-like tightness around your chest or abdomen. If you have a lumbar spinal cord injury you may feel pain around your groin and lower body.

9. Common things about neuropathic pain experienced at the level of your spinal cord injury: This can happen when nerve roots get trapped. This can lead to pain that feels like waves, or a tight band or burning at point where your normal skin sensation stops. Common things about neuropathic pain experienced below your spinal cord injury: Pain can occur where there is no sensation. Pain is often described as pins and needles, numbness or burning. It can occur anywhere below the level of your spinal cord injury.

10. Other common things about neuropathic pain: When other sensations that don’t normally cause pain such as heat, cold or light touch begin to hurt, this is called allodynia. When things that cause mild pain such as a pin-prick become very painful, this hypersensitivity is called hyperalgesia. These are most common with incomplete injuries.

11. Pain Management Many types of acute pain following SCI can be very successfully treated. E.g. constipation can cause pain and discomfort Unfortunately it can be very hard to get rid of neuropathic pain completely. However there is nearly always something hospital staff, working with you, can do to reduce your pain so that pain doesn’t stop you progressing in your rehabilitation. Research into persistent pain has shown that there are common patterns to things that can make pain better or worse.

12. What works Team work is crucial. Hospital staff need to understand your pain and help treat it with you. Because pain cuts across all boundaries many staff may be involved: Doctors, Nurses, Occupational Therapists, Physiotherapists and Clinical Psychologists. Research shows that high levels of pain are not only distressing but can reduce what people can achieve in rehabilitation. Treatment is focused on reducing your level of pain so that you can get on with rehabilitation or other things that are important to you.

13. Things that can make the pain worse: Too much rest and inactivity. Doing too much in one go. Tiredness. Bad posture and positioning in bed or in your wheelchair can lead to pain. Poor transfer technique can put strain on muscles and joints. Concentrating on the pain (not being able to ‘tune out’). Unhelpful thoughts about the pain itself. The common and most disabling one is the fear that pain means you are doing yourself harm. ‘Thinking the worst’(focusing only on the negative or pervasive impact of the pain), can lead to an unhelpful vicious circle.

14. Taking control How we feel in ourselves, sad or worried, can affect how much pain we feel or when we notice pain. Feeling depressed, angry, anxious, stressed, frustrated, hopeless, helpless can all ‘tune in’ the pain and make it worse. Spinal Cord Injury is a very stressful experience and we might expect to experience some of these emotions at some point. If you feel your mood is becoming a problem there are lots of things that can help. Clinical Psychologists are part of your treating team and can see you at any time.

15. What helps? Pain is a complex interaction between how your body feels, how much you feel able to cope and what you do. Understanding your pain is an important part of helping to reduce worry and stress. Medication is usually an important part of pain control. But changing what you do when you feel pain, and being aware of your thoughts and feelings when you feel pain, have been shown to be as important.

16. Pain Medications Using medicines to treat pain is a simple first step. Medicines are used in a stepwise strength way – this is called the analgesic ladder. This is both for pain that is of recent onset (acute) and pain that is longstanding (chronic). For neuropathic pain different drugs are used from musculoskeletal or visceral pain.

17. STEP 1: Paracetamol and maybe Ibuprofen. STEP 2: Medication in STEP 1 plus an antidepressant or anticonvulsant drug (these can be used together in smaller doses to get better pain relief with fewer side effects). As with all medication, it is important to start on a low dose and increase your medication gradually under the guidance of a doctor. It can take about 4-6 weeks before medication in Step 2 will have an impact on your pain. Also if side effects occur, never stop the drug suddenly, always discuss this with your doctor.

18. Other drugs Opiates These drugs are used more often now for persistent pain. They come in a variety of tablets, patches and liquid forms. The amount you need has to be slowly worked out for you to avoid side effects

19. Things that YOU can do to help Regular self monitoring It can help you if you rate your pain each day on a scale like the one below: This can help you see when you feel in most and least pain, and the kinds of things that can help you manage best. This scale might also help you to explain fluctuations in your pain to rehab team. 0 No Pain 10 Worst Pain 5

20. What else can you do to help? Be open to other forms of pain relief e.g. acupuncture, desensitisation, or psychological strategies. Try to do things in a different way rather than to stop doing activities. And try different ways of managing your pain and find out what works for you. Try different positions in your bed and wheelchair. If you start to feel low, distract yourself by doing something you know makes you feel good. Try to think about things in a balanced way. Remind yourself of the things you do well and the things you can still enjoy.

21. What if the pain doesn’t go away? If pain interferes with your rehabilitation tell the staff that work with you and it can be discussed in goal planning. The Clinical Psychology Department can advise on pain management and may talk about ‘Mindfulness’, a way of learning to live with the pain so it doesn’t dominate your life. If pain is still a problem when you are discharged home there should be a follow-up plan in place. Make sure your General Practitioner is aware pain is an issue. He or she could arrange a referral to a specialist pain clinic or Pain Management Programme in the community.

22. Other Resources: There are leaflets about Pain Management on the each ward written by the Clinical Psychology Department. The Spinal Cord Injury Association (SIA) also have information. On the internet: Spinal Injuries Network British Pain Society (this is an excellent site.)