No one around me gets what I am going through...I have rsd in my hand/wrist and now I belive its spread to my shoulder. How did you all cope or come to terms with this diagnosis and pain....I'm miserable. I enjoy nothing. I can't sleep. I'm in soooo much pain. All the drs want to do tests and tests and more tests. Hen they take weeks/months to get them done.....and all the while I sit here suffering....it's not fair

I get where you are coming from. I am there. Thank God for my Mother in law. (Love that Woman). She is a RN for 20 plus years. She has taken the time to do the research. This helps because she helps explain it to my husband and she has started going to my appointments with me. As far as the doctors taking there sweet time for doing this and doing that. I get that too. Workers comp took there time but also so did Anthem. Everything takes for ever in the medical world now. Why? I have a thought on that but will keep it to myself. Just know you are not alone.

Trust me when I say, we here completely understand what you are going through!! It is so difficult for anyone who hasn't had Crps to understand the level of pain, not to mention the limitations we can suffer.
You might want to see if your family/loved ones could talk with your doctors with you. Or maybe see a pain management specialist together. That way they might have a clearer understanding. Even then the stress (emotional and physical) can be as bad as the pain.
When I was first diagnosed with crps, for the first year was the worst. Try to stay strong and know that we are all here for you. I had to relearn to do everything, from cleaning up the house to driving my car, so I wasn't in a constant state of a "Flare up" pain wise. I'm currently on two different pain medications and a non narcotic pain med as well as a ketamine/gabapentin/lidocaine compound cream. I have had months of physical therapy, nerve block(failed), pain management therapy, and that was only a few things out of the first year lol! It's a very tough process but it will get easier. Finding a good doctor who KNOWS how to treat crps is the key.
I found this site on one of my lowest days. Simply being able to talk with others who knew what I was going through, helps immensely!! Any time you need to talk, we will be here for you!!!
It's not that it gets "eeasier" per say either. I think it's more learning your limitations and finding the right med combination. Therapy can be very important and helpful too. Having someone to talk about everything you've been going through, privately, sometimes elevates the internal stresses that you can't voice to others.

I'm sorry to hear that you're doing through all this, please contact me anytime you want/need to talk!! And try to stay strong, you CAN get through this.

I know the feeling well!
Fortunately for me though I'm in a wheelchair most of the time so at least when I'm out and about I get the "handicap treatment"...

I think we've all been there...it's really hard not to have been with this condition.

For me...I feel very lucky to be surrounded by so many supportive people. Especially my boyfriend (who I live with) and his family who are also close. Not that my family isn't/wasn't supportive and helpful...but they live in another state so that day to day support is a little harder long distance. The best thing for me was that THEY never questioned what I was going through, never made me feel bad or like I was a burden, and at the same time never made me feel broken. They kept me focused on getting better and finding answers...and it kept my head in the right place.

My dad did give me the best advice that helped me get through the roughest moments. That advice was, "Focus on the things you CAN control and don't worry about the things you can't." Much easier said than done...but if you can manage it you would be amazed at how much it can change how you think about things. There's always something in our control...even when it can feel like there isn't. Recently I was in the hospital and the nurses banged the bed into the wall causing a REALLY bad flare up and I knew I had to leave the hospital to take care of the flare up because they were not equipped to do it at the hospital. But my doctor said she wouldn't release me. I felt helpless...but then I ran through the options that I had IN my control. She wouldn't let me leave but I didn't have to let them do anything that would make my flare up worse so I refused any additional blood work, the taking of any vitals, I pled my case to the new nurse who came on at shift change...and she was able to convince the doctor to let me go. There isn't always much in our control...especially when it comes to doctors and treatments and timelines...but there's always SOMETHING...and that gives me a sense of control over the situation (no matter how small it is).

I've had some major setbacks throughout the years with my RSD...the worst ones being when I put all my hopes in a particular treatment or had expectations that a certain doctor would have the answers...only to have nothing go the way it was supposed to and all my hopes dashed. You can't help by feel crushed and defeated when that happens. One particularly bad disappointment...my boyfriend helped me get up to the bedroom (I had been spending all my time in the living room to avoid stairs...including sleeping) so I could sit in the dark, cry, and be miserable...and he told me I got ONE DAY...and then we needed to figure out what the next step was. So I took my one day and by the end of the day I had a few ideas in my head about what my next move would be.

I'm also very stubborn and if you want to get me focused and determined...make me angry. The worst doctor I had through all of this was actually a small blessing...because he made me SO angry when he told me I would just have to get used to a life in a wheelchair. HECK NO! That was unacceptable when I hadn't gone through anywhere near all the treatment options and it set me off...and I ended up calling and making an appointment with the best doctor I experienced throughout this whole thing in the car on the way home from that appointment.

My biggest advice to you based on my own experience...is figure out what you want/need from your treatments with your doctors and make sure you all have clear GOALS for your treatment. It can't just be, "Make the pain go away...I feel awful." Let's face it...remission is definitely something we all want but if you want advice on how to have a better quality of life now...you have to look for realistic, specific goals that will allow you to go out and live your life. For me...I had a LOT of different symptoms that were preventing me from functioning. I couldn't stand or walk at all, had blurry/double vision, TERRIBLE balance, wasn't sleeping, experienced spread to almost my entire body and couldn't wear normal clothes...and a whole list of other things but these were the big issues that were keeping me from functioning. So...I sat down with my new doctor and we focused on these issues specifically and tackled them all one at a time. Once we got these things under control...I was able to live a more normal life...a life that gives me joy and gives me something other than the pain to look forward to every day. I still have high pain levels...lowest these days is a 6-7 and it gets up to an 8-9 every day by the end of the day...but it is MUCH easier to deal with the pain when you have other things going on vs. just sitting there day in day out in pain with nothing else to focus on. I'm off all pain meds (as the side effects were just not worth the little relief they gave me)...but I use a walker (I'm only 30 and have been using it since I was 27...so a little odd), a TENS unit, an ultrasound heat therapy machine, heating patches, tDCS unit, and hot baths with Epsom salts to control the pain. I went through desensitization therapy so I could wear normal clothes again. I have taken a lot of time to figure out what my pain triggers are and do what I can to avoid those things or minimize their impact on me. I changed my diet to follow the Four F's diet (I cheat a little but stick primarily to this and avoid the bad things...it does help with the pain a little).

You cannot focus on the things you used to be able to do...I have had to figure out new ways to do lots of things because I can't do things the way I used to...but I can still do them in different ways and that is what I focus on. And I'm still learning every day...learning what I CAN do and what I CAN'T...but it's worth all the effort.

My life will never be the same as it was before...but I've reached a point where I am happy and living as normal a life as possible. I'm not going to let RSD hold me back...I am NOT my RSD.

I hope that some of that helps...it's just my own personal experiences and what has helped ME. I know we are all different and handle things differently...do not beat yourself up for feeling the way you do...we've all been there and many of us are still there. You just have to find within yourself what will give you the power to cope with and deal with all this.

Best of luck...take care...and keep us posted on how you are doing. Hugs.

Thank you for your support everyone. I have an awesome live together boyfriend. However, his mom is terminally ill and not doing well so he is currently living with her and has been for a few months. I have no family close by that I can count on so I am pretty much flying solo and don't see that changing any time soon. This is affecting every aspect of my life....It's so overwhelming. Since my surgery that trggered my rsd I have had more dr apts this year than I have all of my life I think. I believe it's also causing blood pressure issues from the pain. I just want some relief or to sleep for more than four hours at night or to be able to concentrate on anything other than this pain.....I sure hope I find a new normal soon

It simply changed my life because I could no longer do many of the things I was doing. It's almost like suppressing the pain is a 24/ 7 job and it requires not only not thinking about it but exercise, diet, and nearly constant care. I used to enjoy heavy work so now I try my hand at carpentry. No one has enough hands for carpentry anyway so having only one isn't the handicap it might seem.

The best advice I can give you is to keep calm and rest,avoid the stress and focus on the mind to get calm.the mind is so powerful and will help you to control the anxiety and pain.
Relax and rest for nows,my dr once told me the most stupid thing I ever heard but now makes sense ,if you have a bad day ,stay at home in bed and rest ,don't fight the pain and let the day go by and episode will pass ,have patient.
I hope you soon feel better and find the treatment that get you better day by day not only few days,but many days ,I really hope the best ,take care,gentle soft hugs with love Jesika .
Mind and body works together ,find a common space of peace for both you will get much better .relax and rest .

I think resting is just soooo foreign to me....I've never been one to not be doing something and everything should have been done before I start it.....I do need to find a way to slow down and change my thinking.....I actually spent a day recently in bed, in my lounge wear, watching movies and honestly it did do me a lot of good.....but then I just feel like things pile up behind me...I need balance but don't know where to find it

Have you tried a heating pad?Heat can do wonders for me..Also a small glass of wine...It claims me down,inwhich decreases the pain level..I to have a hard time sleeping.I have rsd in my right hip,knee,thy,and foot..In the beginning.Now I also have it in left knee too.I also have tried ebsons salt on a hot wash cloth..put the salt on the washcloth after heating with hot water,not to burn you though..do not need that..lol...but then place it there,and it does help . I love laying in bed though,because the moment I put my feet on the ground my ankles hurt so bad.Does anyone else get that?This is just my opion I feel all those test do not prove much..I guess look for breaks,etc..but I never had a test that said oh ya rsd...lol...I have had this for 4.5 years,i now have a stimulator,it helps some..you really need to focus on what you can do and push ahead.You are in my prayers..