YES, CRPS/RSD IS A TYPE OF CHRONIC PAIN!
Chronic pain is a serious problem but is often made worse by misinformation, negative attitudes and beliefs, outdated ideas, negative emotions. It is recognised that chronic pain is often mismanaged, not because we lack adequate treatments, but because of fear and ignorance. These steps are designed to help you mentally cope with chronic pain in the best way possible.
1. Make sure you understand what kind of a problem pain really is.
Chronic pain is different to other medical problems, which can often be treated relatively easily and successfully. Chronic pain is a complex illness, caused and maintained by a combination of physical, psychological and neurological factors.
These multiple causes make it difficult to pinpoint any one cause for pain, or any one treatment. Pain is also often dismissed or poorly treated because of the ‘baggage’ of old ideas about pain, for example, pain where the physical cause is unknown is often undertreated. This is despite the fact that the role of neurological factors means pain can occur in the absence of external causes and that such pain should not be dismissed or considered abnormal.
The medical establishment has struggled to meet the challenge of pain, and now recognises that this problem cannot be overcome without combining input from other disciplines such as psychology and physical therapies. Pain is also a subjective experience which is impossible to accurately measure. Pain involves a range of emotional reactions including anxiety, fear and depression.
Chronic pain is so awful that sometimes it’s easier to escape into wishing it had never happened, or hoping for a miracle cure. If persistent, these common reactions to pain can actually become a bit of a trap. You need to face the reality of what’s happened, and find constructive ways of dealing with it.
Acceptance means more than just intellectually knowing that you have pain, it means actually allowing yourself to feel the anxiety, fear, anger and grief that go with pain. Acceptance is a process, which requires progressively acknowledging all your feelings, and getting your physical and emotional needs.
In order to accept and go through the negative emotions associated with chronic pain, you must have adequate safety and support. Safety means having adequate control over your pain through the right combination of medical, physical and psychological treatment inputs. Support means having adequate emotional support from family and friends giving you a feeling of containment and security.
The end product of acceptance is reduced pain, inner peace, less anxiety and better coping.
3. Take Control.
After many months or even years of pain and failed treatments, its easy to slip into feeling hopeless and that nothing can be done. Pain sufferers are often the butt of negative treatment and it’s easy to end up feeling angry and victimized. They often have some justification for feeling this way.
Maybe you didn’t cause the pain, and maybe you aren’t happy with some aspects of your treatment, but guess what? – life isn’t fair. Blaming others for your problems, however well-justified, turns you into a victim and is like giving away control of your life. You are allowing yourself to be led by your emotions, but you do have a choice. Take the easy path (which isn’t really so easy) and simply blame others, or take control and get information, communicate assertively with your doctor, practicing pain-management strategies such as regular exercise, pacing and relaxation and stress-management.
You need to decide whether you want to be a victim or a survivor, a passenger or a driver. Your pain is no-one else’s problem but your own. You do have rights and even responsibilities as a health consumer and a patient. Because chronic pain is difficult to detect or measure, you need to be an informed, active participant in your treatment.
Don’t be afraid to ask questions, don’t be afraid to tell the doctor what you think and what you want, don’t be afraid to ask for stronger pain relief.
4. Have a good working relationship with your doctor.
An open and trusting relationship with your doctor is essential. This means being able to tell your doctor how you feel, ask questions and feel listened to and understood.
The doctor-patient relationship must be a two-way street. Although you rely on your doctor’s “expert” opinion for treatment advice, he depends on you for accurate information on which to base his decisions. It is your responsibility to describe your symptoms as accurately as possible and to report back regarding treatment outcomes, even if unfavourable.
Under-reporting of pain has been identified as one of the biggest causes of mismanagement of pain. The doctor-patient relationship can be undermined by bad communication, ignorance, arrogance and fear. For example, many people are actually afraid to tell their doctor how they are feeling for fear of being labelled as weak or a complainer. Other patients report down-playing the severity of their pain because they don’t want their doctor to feel like a failure!
You should feel that you can talk to your doctor, that he listens and respects you, and be satisfied that he is working competently and thoroughly on your behalf. You also have a right to change doctors if you are dissatisfied.
5. Never ignore pain.
In the treatment of chronic pain it has become fashionable to recommend ignoring pain (after medical investigations are complete) in the belief that it is only pain and there is nothing physically wrong.
This approach represents a pendulum-swing away from the old fashioned notion of prescribing bed-rest in favour of maintaining activity. The idea is that inactivity only leads to depression and does not help the problem anyway.
However, with certain types of pain, this can lead to a cycle of aggravation, sleep deprivation, exhaustion and increased pain and suffering, particularly if you are someone who typically ignores pain (ignoring pain is of course, what causes most repetitive strain injuries).
The other problem with ignoring pain is that every time pain occurs, it leaves an imprint in your nervous system, a kind of ‘pain memory’. These repetitive pain experiences lead to overstimulation of the nervous system and the generation of spontaneous pain signals, leading to a cycle of stress and pain. There are thus sound reasons for wanting to avoid pain, but again, total inactivity is not the answer. The best approach is a balanced one with paced activity levels and avoiding undue aggravation of the pain.
6. Have a balanced approach to physical activity.
It can be tempting to adopt a “do nothing” approach, in the hope that you may avoid further pain. As we have indicated, since chronic pain is partly caused by neurological changes, avoiding activity will not stop the pain. Avoiding activity also leads to muscle wasting and a build-up of waste-products in the tissues, which can actually exacerbate pain.
At other times, you may feel frustrated and force yourself to complete relatively major tasks (eg mowing the lawns) knowing that it will hurt later. This may cause you to have to take two days of bed rest to recover. This “all or nothing” approach is inappropriate and ineffective in the long run.
You need to pace activity levels. You can do this on your own, via “trial and error” or with a bit of ‘coaching’ in the form of professional help. The support and guidance of a sympathetic health professional is highly desirable to maintain motivation and deal with fears and obstacles along the way.
7. Sleep! Sleep! Sleep!
Loss of sleep caused by inadequately managed pain can lead to a cycle of fatigue, depression and irritability. Inability to sleep, or waking up feeling tired, are signs that your pain is not being managed properly. Developing a restful sleep pattern is essential to coping with chronic pain. Improving your sleep will give you more energy and help you feel more able to cope.
There are many things you can do to get better sleep including relaxing, perhaps by taking a hot bath, listening to music or playing a favourite relaxation tape before going to sleep; self-hypnosis; a good mattress; posture; medication; and good overall stress-management.
8. Make sure you have adequate support.
Many chronic pain sufferers become isolated, alienated from loved ones, their work-mates and society. Inadequate social or emotional support can lead to isolation, depression, and increased risk of suicide. People who normally pride themselves on being independent and not needing others are particularly ‘at risk’.
Unfortunately, the negative reactions of others can discourage chronic pain sufferers from talking about their problems or seeking help. The unhelpful reactions of people you thought you could rely on can be very disappointing, it’s another thing that falls into the ‘life isn’t fair’ basket.
The reality is it’s simply ridiculous to expect yourself to be able to cope on your own with a chronic illness that robs you of your ability to work love and play. Having adequate emotional support greatly increases your ability to cope.
Talking to close family and friends is vital. A family talk with your doctor of psychologist can also help by enabling them to learn more about your condition and talk about things in a neutral environment.
9. Don’t expect people who don’t have pain to understand what it’s like.
It’s frustrating, and easy to get angry when others don’t seem to understand. However, because chronic pain sufferers often have no visible injury, it is easy for family and friends, and especially children, to forget there is anything wrong. They may also ‘forget’ because it is hard for them to have to live with the knowledge that a loved one is in pain.
So don’t expect people who don’t have pain to understand what it’s like and be prepared to have to remind others about your limitations. Children especially cannot be expected to understand the implications of a condition like chronic pain. It’s a lesson that has to be repeated many times.
10. Forgive yourself.
The lost ability to work, love and play caused by chronic pain can create feelings of guilt and failure. Become aware of your own expectations, and any feelings of shame or guilt and examine them critically. Chances are you didn’t ask to be in pain.
Repressed feelings of shame lead to resentment and later emerge as anger. Feeling guilty can also be a subtle form of self-indulgence – when you engage in self-blame you are really wallowing in self-pity.
Forgiveness and letting go of guilt will be easier if you choose a proactive approach by adopting these 10 Steps.