Ideas for family and friends to make people living with Complex Regional Pain Syndrome more comfortable.

Being in constant chronic pain changes almost every aspect of a person’s life.  It is exhausting.  The levels can wax and wane and pain makes it hard to think and concentrate.  Every activity, from the time of getting out of bed until going back to bed again, must be carefully considered.  Pain, fatigue, required recovery times and other symptoms must be evaluated and considered in the context of what has been recently done, what needs to be done and what planned activities are coming up.

These are some things to consider when supporting a person living with chronic pain:

1. People with chronic pain, such as Complex Regional Pain Syndrome (CRPS), seem unreliable (they can’t count on themselves). When feeling better they promise things (and mean it); when in serious pain, they may not even show up, often without notice. Pain people need the flexible time found in many cultures. Please don’t take it personally or stop inviting them out or to events.

2. An action or situation may result in pain several hours later, or even the next day, causing the person to need extra time to recover. Delayed pain is confusing to people who have never experienced it.

3. Don’t touch without asking. People with CRPS experience allodynia – extreme pain from normally non-painful stimulation. When the lightest breeze on an affected area, sound vibrations or the brush of a feather can hurt, then a hug, touch or handshake can hurt so much more and cause a painful reaction which can last minutes, hours or even days.

4. Pain can inhibit listening and other communication skills. People in pain can suffer from ‘Brain Fog.’ This is a cognitive dysfunction that can cause issues with memory, concentration and word recall. They may know what they want to say but can’t find the words, or forget what they were saying part way through a conversation.

Concentration may be lacking when in high pain. It’s like having someone shouting at you or trying to talk with a fire alarm going off in the room. The person may be listening without responding.  You may have to repeat a request, or write things down for a person with chronic pain. Yes, you might have told them something before, or asked them a question before, but they genuinely cannot remember. Don’t take it personally, think that you are being ignored or think that they are stupid.

5. The senses can overload while in pain. Noises that wouldn’t normally bother you, seem too much. They may need ‘time out’ or quiet time in another space for a while to let their nervous system calm down. Sensitivity to other senses such as smells can trigger headaches, brain fog and other symptoms.

6. Patience may seem short. They often can’t wait in a long line or wait for a long drawn out conversation etc. They can become irritable or seem out of sorts when their pain levels are high.

7. Don’t ask “how are you” unless you are genuinely prepared to listen – it just points attention inward and reminds them that the pain is there.

8. Be there to listen without judgement. Often, people in pain have no one to hear how much they hurt or to help them with the little simple things that they struggle with yet don’t want to admit to being in pain. You get to walk away, but they are stuck in the same body, trapped in pain, day in and day out. If someone is in pain all day, every day, then is it reasonable that they will complain at some point.

Simply listen. They may be angry this has happened to them, they may be feeling anxious or depressed about not being able to get on with their ‘normal’ life. Let them know that they are being heard by paying attention to them and letting them express themselves.

9. A pain flare can come on very quickly and unexpectedly. These flares can be caused by just about anything from too much activity to a change in the weather, inflammatory foods, physical contact, stress, allodynia from a light breeze etc. or from many other causes which in many cases can’t be pinpointed. This will sometimes abate after a short rest, but could last days, weeks or months. Chronic pain from CRPS waxes and wanes unpredictably.

Understand and be considerate if they say they need to sit, lie down or take medication etc immediately.  Even if they seemed perfectly fine mere minutes ago, for a person in chronic pain, a sudden flare can become completely unmanageable within seconds.

10. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge available if required. A person with chronic pain may not want to go anywhere that has no space where they can sit or lie down if needed.

11. When in pain, a small task, like doing the washing, can seem like an insurmountable task. An hour later the same job may be quite okay.

12. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of heightened pain.

13. Give help without asking. Pitch in and help with their daily responsibilities, especially if they have been in a pain flare for more than a couple of days. Cook dinner or pick up some groceries to bring them.  Watch their kids, or give a helping hand around the house. Tasks you find easy like changing the bed sheets can seem impossible to a person in pain.

14. Offer help in specific ways. People in pain don’t like to burden others, so don’t just ask if you can help them, offer specific help instead. Can I run any errands for you? If you can do it in a way that doesn’t make it sound like a chore for you it will be easier for them to accept. ie.  ‘I am at the shop, do you need some milk, bread or anything else while I am here?’  ‘I am cooking up a batch of soup, Can I bring you some?’

15. Never assume a person is not in pain. Chronic pain sufferers often want to appear normal, dislike burdening family and friends, don’t like the pain to dominate their relationships with others and just want to fit in to normal situations. They will often modify their behaviour in front of others, wear a ‘mask of normality’ and respond with “I’m fine” even when in serious pain.

16. Understand that the pain is always there. A person living with chronic pain has the same range of emotions and right to participate in life as everyone else. When they see a loved one or friend they are happy and smile. When enjoying their company they may engage in laughter.  You may see them enjoying an outing or an online post of them looking happy or participating in an activity.

This does not mean that they are not in pain.  It simply means that they are getting on with their life the best that they can.  Focussing on the pain can make it worse. Distraction is one of the best therapies for pain and enjoying time with people they love or participating in fun activities when they are able is one of the best ways to self-manage their pain.

17. Believe them. When they say they are in pain, they are!

18. Pain is not always easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited compared to the body’s ability to feel varieties of discomfort. Often too, people living with CRPS have tried before to describe their pain and know that others simply do not ‘get it’, so they simply give up trying or at times don’t have the energy to explain.

19. Respect their daily physical limitations. With CRPS, mobility, pain levels, strength, fatigability and ability to cope can be extremely unpredictable and is frustrating for everyone. They are unsure from day to day, and sometimes from hour to hour, how they will feel and what they will be capable of doing. A person with CRPS may be able to stand for 5 minutes, but not for 10.  They may have been capable of walking today, but will need to use crutches or a wheelchair tomorrow.  Just because they could do something an hour ago doesn’t mean they can do it now or tomorrow.

20. Although we have a good reason for the pain, medical science is still limited in its understanding of disorders such as CRPS. That does not lessen the pain, – it only reduces their ability to explain all aspects of their pain, why it happens, and to have you believe them.

21. Nobody wants to feel unwell or be in pain. Most people living with CRPS were once very active and desperately want to find answers and effective treatments for their situation. They did nothing wrong.  CRPS intruded upon and has changed their life in ways only they can fully understand.

22. Being unable to work is not a vacation. People with CRPS who are unable to work are struggling every day to do simple tasks and activities. Having a shower and getting dressed can be difficult.  Many are housebound, too sick to leave their homes except for medical appointments.  Often just going out the front door will raise their pain levels, from sun or breezes touching their skin, to noises and activity levels being too much to bear.

23. Be patient. Not being able to participate in life in the way they would like, or used to be able to, can cause a wide variety of emotions.  People who have chronic pain will often experience all of the stages of grief.  i.e. denial, anger, bargaining, depression and acceptance.  They may go through some or all of these stages more than once.  They grieve for the loss of the life they had and the loss of the life they dreamed of having in the future.

They may not act like they normally do, they may be easily irritated, or become angry or hostile.  They may even experience significant personality changes throughout this time.  Please try to be patient and forgiving in these situations and think about how you would feel if you had a really bad toothache for days on end that wouldn’t go away, then magnify that about 10 times.  Often they realise at the time, or afterwards that they are behaving badly and will feel guilty enough.  You pointing out their poor behaviour can just make the situation worse.

24. A little empathy can go a long way. People with CRPS just need someone to be there for them. The reality is that many people with chronic pain often feel like a burden to their family and friends. Whether it is merely asking for help for simple things, or even just mentioning how severe the pain is on a given day; feeling like a burden is one of the most common concerns among those suffering from chronic pain.

People living with chronic pain don’t want sympathy or pity for their situation

You can make a massive difference in the life of someone with CRPS by learning more about their symptoms, approaching them with compassion, understanding and empathy and offering them friendship and support.