I recognise that piece Kevscar posted, it's all so true...

Here's a little thing I wrote a while ago... It is made up of a couple of online lists merged together and then I changed a lot of it!

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CRPS is the most painful form of chronic pain that exists today.

When you suffer from chronic pain, you have to constantly think about everything you are going to do that day, and how it will affect your disease and your pain level.

Therapies and pills are part of what we have to do to get through the day.
Unless you have RSD/CRPS yourself, please don't suggest a 'cure', magic pill or new therapy to us. We have tried so many things, and our doctors and therapists know best how to help. Thank you so much for trying to help, but it is highly unlikely that what helped you will help us.

Sometimes even a breeze or cold temperature causes deep pain, so please be aware of the potential for terrible pain from things you might take for granted, like a bump, knock or scrape. This is why we sometimes seem anxious about simple things!

Being in chronic pain is a full-time job, one with no holidays, terrible benefits, and no way to quit. We would prefer a normal job every time.

Chronic pain affects the entire family, not just the patient.

It is an invisible disability. Even other pain patients will sometimes forget that they cannot see your pain and make assumptions based on what they can visibily see.

A chronic pain patient may have a good hour or even many good hours in a day where they can "appear normal" to everyone else, but most people don't realize the price that they paid before and after.

The positive involvement of loved ones means the world to a CRPS patient.
Friends and family can find all this very difficult to accept, and frequently misunderstand or make assumptions. When your life has already been turned upside down and your future changed by something so cruel, this is a big factor in the depression so often associated with a painful condition like CRPS.

Your understanding means the world to us.
***

Hope it helps a bit

Bram.