Ideas for family and friends to make CRPS sufferers more comfortable…..

1. People with chronic pain, such as Complex Regional Pain Syndrome, seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Pain people need the ‘rubber’ (flexible) time found in many cultures.

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. Pain can inhibit listening and other communication skills. 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. The effect of pain on the mind can seem like attention deficit disorder. So, 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.

4. The senses can overload while in pain. For example, 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.

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

6. Don’t always ask “how are you” unless you are genuinely prepared to listen – it just points attention inward.

7. When in pain, a small task, like hanging out the laundry, can seem like a huge wall to high to climb over. An hour later the same job may be quite OK.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably.

9. 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 if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g no place to sit or lie down).

10. 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 encroaching pain.

11. Not all pain is 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, this is because we have tried before to describe our pain and we know that others simply do not ‘get it’, so we simply give up trying.

12. 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 reduce the pain, – it only reduces our ability to explain all aspects of our pain, why it happens, and to have you believe us.

13. 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.

14. 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.


Printable Tips For Dealing with People in Pain