How do you explain CRPS to your friends?
 

Howdy,

MY intro...
I am a 56 year old male with MS and now with CRPS.
New to this site, broke my ankle last Sept and after about 4 months was dx with CRPS. Damn it hurts, thought I had it under control at first. Was taking predisone and it appeared to help then all of a sudden it didn't. I wanted a second opinion to make sure it was not from all the hardware in my leg and the orthopedic surgeon looked at my foot and makes it clear that I had CRPS and that I need to see a pain specialist right away. Waiting to get to the appt in about 3 weeks but in A LOT of pain now and taking Lyrical. Will probably start on oxycontin in a few days to help.

Does this match up with the medications and what the rest of you have gone through?

I am also trying to figure out how to explain this disease in a short easy to understand explanation to my friends and co workers. How do the rest of you explain this?
Roger

Unrelenting pain that can only be suppressed with effort. With this are symptoms which seem to affect the brain resulting in mood swings, depression and paranoia.

I tell them it seems like an infection that even gets in the brain and that I don't really understand what's happening either.

i tell my friends/family its like burning from the inside out... and that's just the main thing...

i've also had just about all of them read a research paper that i wrote on it so they can understand it and everything that comes with it more in detail. i know a few other members on here have also had friends/family read my paper. its posted on here if u want to take a look at it.

Andrea,
you should put the paper back up...

Truly Excellent..


Pete
Asb

Hello Roger and Welcome to Neurotalk! You will meet many great people here who i'm sure will be more than happy to help you if they can!!

I'm so sorry to hear that you are in so much pain right now!!:hug: You have certainly been through a lot lately! My nanan had Progressive MS and it's such an awful condition but I can't imagine having both!!

I also suffer from RSD/CRPS. I developed it when I was 12 years old after an ankle sprain and am now 14. It started in my left leg and has since spread to both arms after further injuries.

I was put on Lyrica a couple of months after I was diagnosed with RSD. It didn't really help me and I gained lots of weight so I eventually decided to come off it. I really hope that it helps you ... I have heard lots of people that have had positive results on it but like everything with RSD, everyone reacts differently and therefore you can't determine what will work and what wont.

I have always had a real hard time explaining RSD to my friends and family as they just don't get it. I have lost lots of 'friends' because of my RSD and it was really devestating - I guess I learnt who my true friends are though.

When I am explaining RSD to people, I usually tell them that it is a chronic pain condition that causes my limbs to swell up, change colour, become hypersensitive etc. I also tell them that it feels as though someone is putting boiling water and petrol on my leg as it burns that much.

No one in my family still really understands what RSD is other than my mum. I wish they would go to the hospital with me but they don't!

Have you tried giving your friends some information booklets on RSD that are easy to understand? That might be something to look into as I know RSDHope have lots of useful brochures that I have used to try and explain things.

Good Luck with your appointment with the Pain Management Doctor! I hope you will get some answers and something to help with your pain!

Please keep us posted when you can!!:hug:

Alison.

I am sorry as well. When I first got dx I was not as open but now I try to just say I have a severe chronic pain condition that leave me in narcotic pain and limits my walking ability. That I have been going under treatment and meds and I am hoping with that to get a quality of life back. Some understand more then others and I have gotten what I call the stupid comments but I try to focus on the ones that do support me in a nice way. I agree about getting into the pain doc asap. I have seen a few. Try to make sure they deal with rsd a lot. I would call everyday to see if they get a cancelation earlier. There are so many meds and treatments and what works for one may not for another. Hang in there

I explain it for what it is, a complication of a car accident that was overlooked for almost three years resulting in disability. When they ask for more information, I tell them it's comparable to MS.

Years ago MS needed to be explained like RSD is having to be explained now. It's just too sad that the world isn't catching on faster.

In Belgium, Europe our health care system is such that people with the same kind of function loss who have MS get aids, beds, wheelchairs refunded. If the same kind of function loss is called RSD... well, RSD as a pathology is not even in the written laws, so as a result of that: no wheelchairs are refunded, nothing is. So there you are!

Ankle is bad
 

Sounds alot like my experience??? Im on seroquel, hydrocodone, nuerontin, and just started cymbalta--- so far nothing helps== I'm hoping to find a good pain clinic that knows something about RSD I live in Idaho where none of the doctors understand or believe that the condition is "real pain" just want me to suck it up and get more active????

Wow Roger, I think your question is about the best single question I have seen over the last 5 months I have been here! I think everyone likely has the same frustration; I know I do!

Thanks for bringing up this thread. I don't have an answer. Daily, I try to come up with some explanation for what it is we go through. Part of my wimpy explanation does include, "you can't know the kind of pain we go through, unless you have RSD/CRPS." Doesn't do it justice, though!

Is that a fair statement?

Yes I agree this is a very good question, the answer of which we all struggle with.

I know this is probably a simplified explanation but lately I have been telling people to imagine what it is like if you burn your hand in a fire.

I then explain when something like that happens your nervous system sends signals to your brain to tell you of the danger (pain), it's the normal fight or flight response of our nervous system. Normally people heal fairly quickly and the pain signals stop being sent to the brain, everything goes back to normal.

In my case, my initial injury (a surgery) triggered that response and it got stuck in the "ON" position so my nervous system keeps sending pain signals to my brain telling me that I am hurt. I tell them that there is no "OFF" switch and that my functioning can fluctuate from moment. I let them know that it is chronic and progressive and that I must manage this condition daily.

People still look at me with such disbelief that all this could have happened from a bunion surgery.

MsL