For many people living with Thalidomide damage pain can become part of life, often made worse by every-day activities like driving, housework or using a computer.
Looking after your body and finding ways to manage pain can help make life easier.
Click on the headings below to find out more about pain, what causes it, treatments and ways of dealing with it. There are helpful links at the end to guide you to more information.
If you still have questions, need advice or want more information call the Health & Wellbeing team on 01480 474 074.
We all experience pain at some point in our lives and it can come from any part of our bodies – skin, injured tissue, muscle, ligaments, joints, bones (nociceptive pain), nerves (neuropathic pain), internal organs (visceral pain) or from a combination of these (mixed pain). It travels from the affected part of the body along our nerve fibres, through the spinal cord to the brain, where it can affect the centres affecting our sleep, emotions, appetite and memory.
Pain is very personal and we all experience it differently – it can be very complex and involve lots of different elements that make it hard to describe and to treat. Living with the effects of Thalidomide can cause, and increase, the pain we experience.
When pain goes on for a long time it can affect every part of our lives from relationships and work, to activity and sleep. There are different types of pain:-
- Acute pain- short-lived pain, usually caused by an injury or tissue damage, like a sprained ankle, which gets less as we heal
- Recurrent pain - pain which comes and goes; like migraine headache, or arthritis flare-ups
- Persistent or chronic pain – this can begin as acute pain and fail to respond to treatment, or be part of a disability or long-term illness
- Chronic progressive pain - pain that doesn’t seem to go away and gets worse over time.
The pain cycle
The experience of chronic pain can be described as a pain cycle;
- Changes take place in your nervous system
- This leads to muscle tension
- These changes can make you feel stressed and/or depressed
- Stress and depression can lead to disturbed sleep, which leads to more nervous changes
- And the cycle begins again.
To manage pain, and stop it taking over, you need to break the cycle.
Exercise, relaxation, professional help with depression and stress are all part of a multi-faceted approach that you can use to make pain manageable.
Injuries to muscles, joints and tendons cause swelling, weakness, muscle tiredness, stiffness and difficulty in moving – all of which can result in pain.
These symptoms can occur after a sudden overload on your body or can build up over time; our everyday activities play a part in this - whatever our general health, age or previous history.
It’s important to be aware of the factors that might contribute to the causes of pain and take steps to manage them:-
- Posture – sitting, walking and moving awkwardly can put abnormal strain on your body (such as when you’re using a computer)
- Force - individual muscles may not be able to cope with sustained force (such as heavy lifting when doing DIY or gardening)
- Repetition and duration –low level strain that is repeated many times (such as using a keyboard), or goes on for long periods (such as driving a car), without taking breaks, can increase damage – and pain.
- Stresses and worries can create muscle tension that affects how you move and puts added strain on joints and tendons.
Personal and lifestyle factors
- After you reach 30, your muscle strength declines. The gradual break down of your soft tissue and joints makes them more prone to injury
- Inherited conditions, such as arthritis, can cause pain
- Your lifestyle can contribute to damage and increase pain
- Smoking reduces the oxygen getting to the muscles, increasing wear and tear and slowing down recovery
- Being overweight increases the wear on joints and can lead to joint compression
- Falls or injuries increase our risk of making our disabilities worse, temporarily or permanently. Walking difficulties, in particular, can make us more at risk of falling.
Depending on how bad it is and how it has been caused, pain may be treated in a number of ways:-
Painkillers such as Paracetamol or anti-inflammatory drugs like Ibuprofen can be used to treat the symptoms of pain.
Your GP can advise you about the kinds of painkillers that will suit you best. Your pharmacist can also advise you. If you’re using painkillers continuously, to cope with everyday life, ask about other things you can do to cut down how many you take.
Pain medication is used in cases of complex, chronic pain.
Your GP will tell you the best drugs to take and will check your progress regularly; starting with a low dose of a weak drug which can be increased or changed until you have the best pain relief for you. Your doctor will also explain any possible side-effects to you.
It’s really important to discuss your symptoms regularly, and any side-effects you experience; including your mood, sleep and how you’re feeling in general.
If side-effects are problematic you may need to reduce, or stop taking your medication. Your doctor will suggest alternatives. Sometimes you will continue to take your medication alongside the new one, to keep your pain under control whilst you make the switch.
Opoids may be offered if your pain is causing you significant problems. These vary in strength and will be carefully considered and supervised by your doctor, as they can be habit-forming.
Codeine is the weakest opoid, Tramadol is of medium strength, and morphine and oxycodone are the strongest opoids.
If you can’t take oral medicine (tablets or syrup) you may be offered medicines in the form of creams, gels or patches – these are often just as effective as tablets and treat the area where they have been applied without affecting other parts of your body.
Injections can also help with pain. Local anaesthetic, sometimes combined with a steroid, can help in the short term and may need to be repeated at intervals.
Longer term results can be gained from ‘denervation’ injections which partially destroy the nerves causing your pain.
If your pain has got worse despite treatment, your doctor may refer you for an appointment at a pain clinic or other specialist clinic. You can also ask to be referred yourself.
Specialist staff will be able to offer you advice, information and treatment and can also give you acupuncture, massage or other therapies.
You may also be referred to a Pain Management Programme (PMP) where you will work with specialist staff to put together a programme of activity and other solutions to help you manage your pain.
Surgery is sometimes an option in managing pain. You can ask your GP to refer you for a second opinion from a surgeon who can advise you on how surgery may help.
Medication is not the only solution in managing pain – and should be used alongside practical steps you can take to stop pain taking over.
Taking a look at your situation and what might be contributing to your pain, and doing something about it can really help. Asking yourself some key questions is a good start:-
- Are you relying heavily on painkillers when you could cut down?
- Are there lifestyle changes you could make such as losing weight, or quitting or reducing smoking and alcohol intake?
- Have you got the right balance of exercise and relaxation or inactivity?
- Are there changes you can make to your posture and movement when doing everyday tasks (for example using a computer, driving) that can reduce the strain on your body?
- Are there stresses and strains in your life that could be affecting your ability to sleep or relax, and putting added strain on your body?
You can talk about these issues with your GP, specialist pain team or other healthcare professionals and do some practical things to deal with them:-
- Look at your situation and the changes you need to make to your lifestyle, work and home life
- With the help of exercise experts, such as physiotherapists put together an effective programme of exercise, rest, and relaxation that includes:
- Keeping muscles, joints and tendons mobile in helpful ways
- Altering your posture frequently; taking frequent breaks from any long or repetitive tasks
- Relaxing by changing activity rather than being totally inactive
- Being more active in the evenings and at weekends if you spend a lot of time sitting during weekdays
You can also:-
- Find a balance between activity and rest, pace your activities throughout the day
- Think about what you are doing when you feel pain. Analyse your position and how you might support your painful limb or back better
- Remember that with short arms you have to rely on muscles in the neck and back to support your arms constantly; find other ways to support your arms periodically, say for a short time every 15 minutes, to give your neck and shoulders a rest:-
- Rest your arms on a cushion.
- Occasionally sit sideways to rest the arm on the back of the chair
- If standing for long periods put your hands in your pockets or lean each arm on a surface
- Do a task for as long as you can, but think about the tension in your shoulders and neck. Take a break. Depending on the level of pain, a couple of rolls of the shoulders might work as a break, or a walk, a change of position or a change of task
- Think about how well supported you are in bed. If your arms are not long enough to reach the pillow, use extra pillows to support them
- Get professional advice on a suitable exercise programme for your arms as you may be unintentionally causing further wear and tear on your shoulder muscles by exercising the damaged muscles instead of exercising the supportive muscles
- Consider having regular massage treatment or look at buying a home massager – ask the Health & Wellbeing team for their advice and recommendations
- Consider gadgets to help everyday life to reduce the amount of strain on your body. There is a balance between the idea of “use it or lose it” as compared with protecting your body and joints so they wear out less quickly. Phone the Health & Wellbeing team for more help
- Look for hazards that could cause you to fall (particularly if you have a poor sense of balance or difficulty walking) – both in your home and outside - and take particular care with alcohol. If you feel particularly at risk of falling or have already fallen several times, ask your GP if there is a falls risk assessment service in your area and if they can refer you.
Diet and exercise
Diet and exercise are crucial in managing pain.
Eating well helps keep the nervous system healthy. Eat smaller portions at meal time and make sure you have a good mixture of vegetables, fruit and protein. Aim for five portions of vegetables a day and two of fruit –juicing can help with this. Supplements like Omega 3 fish oil can maintain your joints and keep them supple
Done properly exercise can improve the fitness of muscles, joints and tendons. Muscle soreness after exercise is normal and a little soreness is a good thing as it can build muscle strength. But the more vigorous the exercise, the longer your body needs to recover.
If you give your body time to recover between exercise sessions, your fitness will improve; but if you keep straining your body while it tries to recover, it will have to work harder to keep up the same level of performance. Your muscles will tire more quickly and you will feel pain sooner. The pain and tiredness will make it harder to improve your fitness.
When you’re planning an exercise programme, take advice from an expert, who will assess you first to understand what your body can and cannot do.
Living with chronic pain will, inevitably, affect how we feel about ourselves, our lives and our bodies; the challenges of living with Thalidomide damage also affect our psychological well-being and can influence how well we cope.
Some simple ways to deal with the psychological factors of managing pain are:
- Trying to stay positive – there are lots of techniques to help you manage negative thoughts, from meditation to cognitive techniques – see the helpful links at the end of this section
- Seeking professional help for depression, anxiety or stress – ask your GP
- Reducing caffeine, alcohol and smoking – this is not just good for your physical health but can help you keep moods under control
- Making sure you make time to relax
- Getting the balance right between domestic/work activity and things you enjoy – don’t just focus on the boring stuff
- Talking to friends and family about the challenges you’re facing – you don’t have to go through them alone
- Contacting the Health & Wellbeing team for support and advice when you need them.
To contact the Thalidomide Trust’s Health & Wellbeing team just call 01480 474074 and they will be able to advise you with guidance based on your individual circumstances. We can give the opportunity to talk to the Trust Medical Advisor or health and wellbeing coordinator. We can also give you access to specialist video resources that are usually only available from your GP