Just yesterday I was diagnosed with RSD/CRPS. It has been 3 months since I have been able to walk and I have been going through test after test after test. People on fb have been asking about my progress and if any diagnosis has been made, but I'm struggling with whether or not to tell people about it... it is such a scary sounding diagnosis (and, to be honest, I am terrified but I'm trying to stay positive about the outcome possibilities.) I guess I just don't want to sound too dire or have people think I'm trolling for sympathy, but I do want people to know what's going on and why I'm still not walking. It's getting annoying to tell people one and a time and I still haven't really found a way of wording it that makes any sense. Also, if I'm really being honest, I don't want to tell people because it's equally annoying to hear "Omg, I'm so sorry, that's awful" or "I'm sure it will be fine." I'm just feeling a bit overwhelmed and I just can't decide what to do. Thoughts???

Hi and Welcome,

So sorry you had to come find us! It seems reasonable to let people know what you are going through IF you feel totally comfortable doing so on FB. However, there is a LOT of misinformation out there about CRPS and if they look it up they may end up with info that is incorrect and a perception you don't want. You might want to consider giving them a disclaimer about this if you are going to do that or direct them to a reputable source of info. http://rsds.org is helpful. Or you may just want to share info in a different way.

Ignore the doomsday scenarios and horrible photos online. These are the worst cases. Many of the experts, even the biggies at Cleveland Clinic, believe that 80% of people improve over time. Staying positive helps your recovery and is not unrealistic given this statistic.

Starting rehab is imperative. Aqua therapy is great for CRPS, especially when you can't weight bear. I spent nine months on crutches total after 3 foot/ankle surgeries in a year so I understand. PT is the way out, just make sure it is gentle and you keep pain flare to a minimum. You want your nerves to calm down. Keep the limb moving, do flexibility exercise even when you can't walk and try to keep swelling down with epsom soaks and light compression if you can tolerate it.

You said you had test after test. That is good, this is a diagnosis of exclusion. If they did not check nerve conduction or look for signs of entrapment then have them do so. It can mimick CRPS. Arm yourself with information. I always recommend Dr. Pradeep Chopra as a resource. He gives a load of info on therapies and treatments in a talk called "CRPS Diagnosis and Management" by Pradeep Chopra on Youtube. It is about two hours long and will answer many questions. Lots to learn!
http://youtu.be/s3LKhOZ8mAM

Hang in there and come here when you need to vent. You are not alone. Channel your anxiety into determination to get better. Taking care of yourself, checking VIT B and D levels, getting clean nutrition and light exercise WILL make a difference. Don't fret about starting out slow. I started at a couple minutes on the exercise bike, learned to walk again in the pool and now can walk a mile consistently. It will take patience and grit but you can do it!

Sending Healing Love,
Littlepaw

It would depend on how many and the type of contacts you have on Facebook, I guess?

It seems fairly personal to post that type of info online regardless...

Even an email directed to close friends and family that you don't plan to see soon or won't speak with, seems more protected.

Go with your gut feeling. If a friend asked you this question, how would you advise them.

Sometimes, no matter how helpful they think they are being, family and friends may say stupid or hurtful things on FB.

For that reason, I think very personal issues are best not put on FB. You are already struggling with various issues and if people say anything annoying or upsetting, it would just add to your stress. Tell the people you know, love and trust in a more private way, like an email.

Also remember, anyone can copy info off your FB page and send or post it anywhere else.

Please also remember that employers, past and present, universities applied to, financial inst checking on you, the law, may at some point ask to see or access your FB page.

As far as what to say to folks asking about your health status on FB, maybe just say you have received an initial diagnosis and you want to deal with it in your own way and you don't
feel comfortable right now disclosing or discussing it on FB but thanks for concern.

Diandra

I would not do a public post about it.
I don't know what your privacy settings are on your FB pages...
I keep mine to family /friends only , not public.

It kind of depends on your level of privacy preference too.

Maybe a private message to specific close family/friends. Or email or call ..
But not everyone really needs to know..

Welcome aezaidan.

Welcome, sorry for why you are here...but you are in good company....maybe putting up a link to a good site explaining RSD/CRPS and go from there????

Thank you all for making me feel so welcomed into the group and for the advice! I think I'm definitely going to hold off for now and focus on finding a good short and to the point way to telling my close friends/family face to face and maybe send an email in the future, when I feel a bit more comfortable with what's going on. Much appreciated!!!

Aezaidan

Sorry you had this diagnosis. And you raise some valid points, questions, fears. First I will say, it's not easy, and it is life changing, but it can and if you have a good doctor, get better! If you have a doctor who knows how to treat Crps, it can get better. It's different for everyone but I spent two months in a wheelchair. It can be very painful, extremely at times, to walk. I just work through it as best I can and am very grateful that I can walk most days. The first year of having this,to me, was the worst. Your body and mind aren't used to the pain. It's not like you can ever "ignore" it or unless you can beat it into remission,which IS possible, but you learn to live with it.

As far as the Facebook post. Well. Those comments you don't want to hear, you end up hearing all the time. Unless they really research Crps, or your close family goes to the doctor appointments with you, even then it's very hard for family and friends to understand what it means to have Crps.
For myself I'm very open and forward whether it's on Facebook or in person. I think that the more people hear, and then wonder and try to find out what Crps is, the better. Part of the reason doctors don't know why this condition starts, in my mind, is because it was so unknown, it wasn't researched! It's only been within the last 20 years that any REAL research and NEW studies have been done since the turn of the century! If you tried to find medical studies or papers written on Crps before the 1990's ...they are VERY few and far between!

But this isn't about what I feel. It's about YOU and if you're ready to do that, and if you are, if you're prepared to answer all the questions. Because there will be a lot. Lol. Hecht I had never heard of Crps before I was diagnosed! You have to realize that the people who say things like"don't worry it will get better soon" or "hang in there" or the worst are the "walk it off" type sayings. You know the "pull yourself up by the bootstraps" type who think it's just something you can take a pill for and go to work full time in any type of physical job for the most part. For myself, except in my legs and feet, I don't "look" like I should be in "so much" pain. It's the people who don't believe you can be hurting as bad as you say, that drove me nuts in the beginning! There are people like that sometimes unfortunately!
For the most part, it's usually just loved ones who want to be encouraging and maybe just don't know what to say, so they just say the type of things you do to people struggling with a serious medical condition. They come from a good place, and say it all wrong...lol ok.

In the end it's entirely up to you! Just know that whenever you need UNDERSTAND....this is the place to come!! Chances are that someone here has gone through something nearly the same!!

If you ever need a "shoulder" let me know
Emma