Hi. I was wondering how people explain crps to others. I moved to australia 4 years ago and am due to go home to the uk for a wedding next year. My concern is that when i left my crps was very mild and most people didnt know i had anything out of the ordinary wrong with me. After a flare up a few years ago the crps has spread. I walk with a very noticeable limp and sometimes use a cane. I have limited use of the effected arm. But my main concern is the permenant tremours and speech problems. I should be feeling excited about seeing my family and friends but i am dreading it. Does anyone have any advice

If it will help print this put and give it to them

Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!

Thank you for that. I think one of my main problems is i dont like to ask for help and my upbringing was one of you have to just get on with it . Anytime i did mention about being in pain to my family they would always say thar someone has it worse. I will send your beautifully written discription to them in hope of a better understanding

If only everyone we needed to would read that!

I tell people that a nerve in my leg was damaged in a knee operation two years ago, and that it has caused permanent damage and has spread to other areas and affects me in various ways. I say that the condition is called CRPS, and I am in pain all the time, i also have some weakness and very painful skin. The pain makes me nervous of new situations, crowds and busy activities. I say that if I need anything or have any problems I will let them know, but otherwise I would really like it if they spoke to me normally about other subjects.

Most people then ask a few more questions, but I find that answers the casual enquiry pretty well. Friends and family might hopefully be willing to read something more lengthy but I find that very few do.

It is a continual and very distressing problem for us all - how much or how little to say?

Another approach is to think up an absurdly unlikely scenario and tell people that. It's great fun!

'I was trekking through the foothills of the Ruwenzori Mountains in Africa when a tremor opened a small crevice in the ground ahead of me. I cut a long pole from a tree and used it to vault across. Unfortunately as I did so, the pole slipped and I fell, cutting my leg badly on a rock. I was carried on a litter by our guides, but we were four days from civilization, and during that time my leg became infected. Sadly, local doctors were unable to prevent me devloping a rare and incurable disease called Cripstinatus which leaves me in constant pain, and has spread to other parts of my body.'

Bram.

The others give great info, but I want to add something that I have used to help my family and some friends understand the level of pain. I have shown them the McGill Pain Index, my husband said it shows the pain levels in a different way. We all know that RSD/CRPS is so misunderstood and no one can ever comprehend the level of pain we experience because they can't see it and if they can't see it, then it must not be that bad right?? It is so aggravating!! It really helped my sisters understand better when I showed it to them.

Good point Nanc, I've done that, visual stuff works better than words a lot of the time...

Bram.

you could also get them to watch these but warn them some of the pictures are upsetting

http://www.youtube.com/watch?v=MviVcjWZDts
https://www.youtube.com/watch?v=sNfr903R4Jc

I have had to help my 14 year old with this issue and explaining it to her friends and teachers at school. Basically your pain centers in your brain do not know how to shut off. They do not understand that you do not have a visible "injury" but your brain is telling your nerves that you do, therefore it affects your ability to control the muscles in your body (walking, talking, using your arm) since all muscles are controlled by nerves. Your brain and nerves continue to think you have an injury and way down at the cellular level they are working as if you do, releasing chemicals that cause pain, and also not allowing your pain pathways to shut off.
I hope this helps. I know it has for my daughter, and it has helped others understand how complex our brain really is! GOOD LUCK.

When I have to explain I say I have a neurological disorder and give the name of it. I keep it short and tell them it causes pain and effects my mobility. To be honest though other than because of the lack of awareness, I don't see why someone 'different' should feel they have to explain. People are nosy and think it ok to ask what's 'wrong' with people like us, but they wouldn't dream of intruding on other people's personal business. I don't personally like the great big long "Understand me" type posts that you see for many chronic illnesses. To me they seem almost combative and selfpitying. That's not to say others shouldn't use them, I just personally switch off to that kind of thing and if I do I can't expect others not to. I keep it short, simple, polite and not woe is me as I don't like a fuss or for other's to think I'm after pity. I'd like more people to know about CRPS but at the same time I'd like to think that by keeping it fairly open/positive they might go off and look it up.

first thing is i say REFLEX SYMPATHETIC DYSTROPHY SYNDROME..
THEN I SAY IT AS A CASCADING NEUROLOGICAL DISORDER.
THEN I EXPLAIN THAT IT AFFECTS THE SYPATHETIC AND PARASYPATHETIC NERVOUS SYSTEM WHICH BASICALLY CONRTOLLS OUR AUTONAMIC SYSTEM, OR ANYTHING YOU DONT THINK ABOUT. IE ORGANS, GLANDS , HARMONES, AND CHEMISTRY. THEN SAY IT TRIGGERS OUR PAIN CENTER ALL THE TIME, THEN I WORK FROM THERE. THEY EITHER WANT TO KNOW MORE OR DONT CARE TO KNOW MORE AT THIS POINT.... HOPE THIS HELPS..