Not sure about anyone else, but I never knew about RSD or CRPS Type II until I actually got it and have had to endure it.

There must be a way to educate our local areas about this? I find so few support groups, local information, etc.

Seems like most people (especially around me, hopefully NOT around you!) would prefer to either not know or ignore and not care.

Not a clue on how to raise awareness here, nut one thought I had I expanded on an idea of something I have wanted to do for years any how:

I want to get a full back tattoo of a phoenix spread-winged rising up and out of flames and ashes holding a sword in each claw to sort of signify our daily battle and the successes many have had.

Comments, suggestions, am I just going out of my mind??

I would never even if someone paid me get a tattoo. Why take a chance at a spread? It is bad enough taking a chance of a spread when having to do things like go to the dentist etc but for something that does not need to be I can't see taking the chance. I know others who feel different and have got one but for myself it would not even be a consideration. Sorry if this was harsh
I understand and also feel frustrated with lack of people knowing about RSD. More so with medical field such as dental etc. As for support groups more seem to be popping up in the area. Even if you can find a chronic pain support group it can still be a supportive place to feel less alone

I don't think getting a tattoo is worth the risk. I have one from before I ever got RSD...but especially given that you already have issues with your shoulder and back I don't think it's a good idea. You could also risk getting infections and internal RSD. I mean...it's your life and I don't mean to tell you what to do...it's just that for ME I would never consider anything like that now that I have RSD. Maybe get someone to design a logo for a t shirt or something instead.

It IS a shame though that so many people don't know about RSD. Especially in the medical community...THAT is the one that really bothers me. I hate that you can go into the ER or a doctor's office for something and tell the doctor and/or nurse that you have RSD and they have to ask you what that is. Not just "expand the abbreviation" but they actually don't know ANYTHING about the condition. It's not new or anything...people in the medical field should have at least the most basic knowledge about it. But even more frustrating than the ones who don't know anything at all are the ones who "think" they do and they spout all kinds of misinformation like: "RSD doesn't spread" or "RSD can only be in a hand or foot" or "If a block doesn't take away all your pain then its not RSD"...what the heck? THESE are the people who should be sued for malpractice (in my opinion) because THEY are the ones who are supposed to be helping patients and instead are delaying treatment, causing emotional stress and depression making people think they are losing their minds, etc. It's just downright criminal in my opinion. If you don't know much about RSD then say that...don't make inaccurate statement like they are facts...refer the patient to someone who can actually help them instead.

There are just too many different things out there for most common people to know about all of them...though I think it would be a worthwhile effort to really help people understand that chronic pain (in all its various forms) is not a symptom but a condition all on its own. It's a concept that a lot of people really struggle to understand...pain as a symptom vs pain as the disease/condition itself. Once people are comfortable with that concept and can understand the difference between acute and chronic pain, it would be much easier for them to learn to understand the different levels of pain involved with the specific conditions. That's what I think anyway...finding a way to educate the masses about chronic pain would be the first important step.

Not that I think awareness of RSD isn't important...I just think that the reality of trying to educate people and change there perception is to start with the basics. If more people could really understand the concept of chronic pain first then it wouldn't be such a struggle to help them understand RSD. But when most people think of pain as just a symptom in the sense of acute pain it's just too hard for most to grasp the idea of RSD and what it really means to be in this sort of pain ALL the time...and when they can't wrap their heads around the idea they usually just assume we are exaggerating or making things up (for sympathy or whatever).

Like I've said before...I'm very lucky to be surrounded by supportive family and friends...but I can tell you that experiences with co workers and general aquaintences and the general public is very different. Some people are naturally compassionate and all but you can still see it in their eyes that they just don't understand...at least those people are more inclined to give the benefit of the doubt. But for the rest...they seem to want to think the worst of people even if what they think doesn't really make sense. I mean...really...how completely sick in the head would I have to be to make up this RSD stuff? Walking with a walker, being stuck in a wheel chair, going to all these doctors and getting countless tests run, months and months of physical therapy...all for what exactly? Just to get out of working...does that even make sense considering what I have done just to get myself BACK to work? Just for people to feel sorry for me...what exactly does that get me? Just to get back at people who I don't like...why would THIS be the way to do that exactly since the ones greatest inconvenienced by it all are me and my loved ones? Seriously...do these people even realize how crazy THEY sound? No...because for some reason it is easier for them to think that I am just an awful, terrible, messed up in the head person than it is for them to even TRY to understand this awful condition. Grrrr...

It's frustrating...but not much you can do about the people who are just unwilling to listen. I just take every opportunity I can to educate the people who are willing to at least try and understand. And then maybe somewhere down the line they can help someone else learn and understand...and so on.

Dear Kheldar,
I totally agree with you (and what everyone said above). After seven years of full-body rsd I continually get people in the medical field say stupid things and are still clueless about it all. So, I decided a few years back that I am going to write a book about it all in the hopes that it will help someone...esp someone newly diagnosed because it is really scary to delve through the medical field and to hear all the wrong info out there. I have my chapters outlined and now need things to settle down a bit so I can really concentrate on getting it together. I had laptop problems (and lack of money) to get a laptop but just recently was able to get a used one.

Catra121 said "I just take every opportunity I can to educate the people who are willing to at least try and understand. And then maybe somewhere down the line they can help someone else learn and understand...and so on." That is my philosophy completely!! People will always ask me what is wrong with me because I use a cane and wheelchair and after being annoyed for a year or two at how rude people were I now take it in stride and educate people just like you do. It seems at least a way to get people to understand about it...but I don't think most people really understand the pain we go through until they have it themselves.

I told this story a bit ago but I will tell it again. I was in the ER years ago and I had a really nice doctor who admitted to me that most doctors when they find out someone has an illness they have no idea about they will go to the internet before seeing the patient and research the disease!!! I about fell out of my bed when he told me that one. But at least he was being honest...so of course I educated him too;.) The things we have to go through.
Take care all,
kathy d

Kathy
My PCP also admitted he knew very little about rsd and would be glad to look at any litertature I bring him about the disease spreading. He didn't know.

I got a tat of the Lorax on my "good" leg 3 years ago and the endorphine rush was amazing! Make sure that your tat artist uses at least six needles. The more needles the less painful.After I got my tat I didn't have to take any pain meds for two days. I have not experienced a spread to that area and I am so ready for another one. My once beautiful legs are so ugly with knots and the weird colors that I figure if I can stand it I will get as many tats as I can tolerate.

Thanks for this, I was thinking of getting a tattoo (something like.. I have RSD) thought it might help in an emergency, don't think I will now. I'm at that horrid stage of my RSD spreading. I wish there were support groups in the UK, we don't even have a group for chronic pain. Saying that, most of the doctors I've saw at the beginning of my RSD didn't even know what it was (even after I was diagnosed). If I had to go to the hospital for an emergency I had to take information about it with me, even my new GP (family doctor) didn't know anything about it, she DOES NOW Thanks again for the advice

My husband and I are both into tattoos and just recently I told him that if this turns out to be RSD (and it did, but I didnt know at that time) I would never be able to get another tattoo. 1.) Because I will now forever fear that even something as small as stubbing my baby toe could cause this horror to spread, that I cant imagine taking the risk of getting ink. and 2.) Although I do get a nice high from the endorphines during my tatt sessions, they still hurt like heck in some places, and I can never again imagine adding any pain at all to the pain I'm already in. I just dont think it would be worth it to me, but I will now envy anyone that comes and goes from my artists shop! As far as the medical communities knowledge of RSD, I have been VERY lucky to have very informed doctors, but I know I am in the minority!