Living With Complex Regional Pain Syndrome: A Guide For Friends and Family
Complex Regional Pain Syndrome (CRPS) is not easy. It is a chronic condition in the sense that it can be very debilitating and involves significant pain experienced within one of more of the limbs and with other symptoms often experienced such as a raised temperature, experiencing hot sudden periods of sweating profusely, goose bumps or even swollen limbs. Other patients may also experience other very idiosyncratic symptoms, but they also find that they can be extremely sensitive and often have an abnormal or overreaction to pain. So the slightest knock or tap can be experienced as quite painful.
However, it is not like a broken leg, where the patient has a visual indicator that something is wrong. With Chronic Regional Pain Syndrome there is nothing to be seen, apart from sometimes the goose bumps or the swelling.
It is very difficult to live with, but in a sense, it can be almost as hard for the friends and family of someone with Chronic Regional Pain Syndrome. They want to be able to help but are unsure what to do and it is also very difficult to see a loved one in pain, but at the same time it is very difficult to know what to do.
Because the condition is so difficult to treat, and it is in nature, long lasting, it requires friends and family to be understanding on a constant basis. Sometimes the patient may be able to do a certain task one week, but the next week simply be unable to undertake the same task. This is not because they are shirking or simply cannot be bothered, this is simply because the pain may be worse and so they are prevented from doing something they could do only recently.
This understanding needs to be constant and comprehensive. Someone with this condition will possibly be short tempered or even depressed by the pain, so it is important to remember that if they do seem irritable or very down, this is not a rejection of you, but simply a bi-product of their condition.
Accepting Their Condition
When someone has CRPS they may find it difficult to keep appointments, so if you are planning to go to the theatre or to a show and they cancel at the last minute, this is not because they are being selfish but simply because their pain levels may be unmanageable.
When they are experiencing significant levels of pain, they do not need ‘cheering up’ or something to take their minds off the pain and insisting that they go out may simply exacerbate the condition. Instead if you just accept the limitations that the condition imposes, both of you will find it less frustrating.
Often the friends and family members of someone with CRPS often get over excited by the prospect of a new treatment. However, this is a notoriously difficult condition to treat and as such various treatment options may need to be tried, before the condition is successfully treated.
But dealing with dashed hopes is not easy, so when any new treatment option is suggested, do not assume that this will be 100% successful. Instead, stay realistic and instead, try to focus on supporting the patient. They will be disappointed if it is not successful, but it will be easier for them if they do not have to worry about your feelings as well.
CRPS is a really debilitating and difficult condition and ultimately it is important for those supporting someone with CRPS to make sure that they talk to their friends and family as well, to share their emotions and fears, so that they can be more equipped to support the person with CRPS, even when it can be a very hard task at times.