Good morning, my name is Chloeanne. I have been diagnosed with CRPS this month and some of the things I have read are scaring me to death. Mine isn't really terrible as I take no pain meds. The pictures I have seen are scary, it's in my right leg from the knee down and has spread to my left leg. I have a wonderful pain management doctor but I'm a little upset with my orthopedic surgeon. This started after taking out the torn part of the meniscus and needle aspiration of a golf ball size cyst on the inside of my leg beside my knee. I don't know what to expect, he hasn't even told me any thing about this syndrome. I feel like it is all in my head but the doctor that put me to sleep for the injections said it wasn't. Why won't they tell me about this. Articles I have read say I need to talk with a phycologist and go to physical therapy. Someone please let me know what is happening to my body. Up until I turned 49 I was so healthy and strong and active. Now I don't even want to clean the house that I love. I cry every time I think about this. I have always been a happy smiling woman, I am not going to let this get me down or anyone else!

Hi Chloe and welcome,

Sorry you have CRPS, but this is the place to get support and info, some great folk here...

Can't type much at mo, long story ! But wanted to say hi. There's a few threads from new folk with info there, usually I'd write loads lol, but I'm typing this while at right angles to yhe screen! Darned back....

Will reply properly soon x

Bram

Iam so sorry about your diagnosis. To learn more about the disease and how it works this website is good http://www.rsdhope.org/what-is-crps.html and if you look into youtube they have videos that show the changes that happen in the brain and nerves which causes all the symptoms. When I first was diagnosed no one really knew much as I lived in Alaska and the person who did didn't explain what had happened with my nerves and the changes it makes to the brain so I went online and did all my own research its funny now when I go to doctors I seem to know more then them. Like I went to a pain rehab center and they said they knew all about RSD and they asked me well what do you want us to do and I was like I know there is no cure as iam type 2 and it had been 4 years before being diagnosed and was full body and internal so I just said make me feel the best I can and to at least get me walking again, and the head doctor was like what do you mean it cant be cured he was like I can make it completely go away. I said ok but in the back of my mind all I thought was this guy has no idea what rsd is. The website I gave helped a lot and watching the videos on what exactly is happening inside our bodies helped a lot .
Sorry again about your diagnosis, and this is a great site to be on for info and support, I find much more support in things I go through here then with my own family, everyone is so wonderful and helpful here.

Samantha

Chloeanne,
Sorry and welcome you are here for that reason,for now you already have an idea about rsd in general ,sound and is scary,for real.
For one the only thing I will add for you is a link for rsdsa ,you will learn more the medical part from it,the emotional part,we all here can give you a hand at anytime,best wishes from Jeiska

http://www.rsds.org/index2.html

Welcome Chloe,
Sorry for the reason you need to be here, but it's a great group!
I care deeply for members on here but can't write much at one time.

Please read all you can on the links others have given. One thing that eased
my fears
early on is that there is no "one size fits all" time line or course of treatment.
We do share our stories of those things for the very reason that medical
community has limited knowledge of this disease.
YOU HAVE TO BE YOUR OWN BEST ADVOCATE WITH THIS! That advice was
given to me by a life saver of a physical therapist. She DOES know
something about this! Gentle physical therapy early on IMO is essential!
I don't have much use of my hand & arm, but I would have none otherwise.
Please don't concentrate on worst case scenarios for now!

Hi Chloeanne,

Nice to meet you! New to the NeuroTalk myself, I am finding folks very supportive and happy to share their experiences with others. So very sorry to hear that you have CRPS. I love your attitude, don't let CRPS keep you down! That is an attitude that will serve you very well! Scared, confused and angry, described me when I was told I had CRPS. Being scared was the worst! It's ok and understandable for you to be scared right now. And one of the best things you have already done is to reach out to people who can help you. No one understands CRPS except another person with CRPS. Folks can be supportive, kind and helpful but because we don't often have visible signs of the condition and symptoms can change on a dime, some have trouble understanding or accepting what this beast is all about. Of course, anything I say here, may in fact never happen for you. And that would be perfectly ok!!

I acquired my CRPS from tendon surgery. My Ortho doc could not get me out of his office fast enough when I mentioned possible CRPS, two weeks post-op. I came to realize that he wasn't the professional I needed nor wanted to have treating my CRPS. I remember saying...He's a surgeon and he does operations, procedures, etc....he doesn't do CRPS.

It is so awesome that you have a good PM doc. That is not the case for many. Was it this Doc who diagnosed you and will continue to see you on an on-going basis?. Has he/she provided you with any information about CRPS and treatment options? It is usually, but not always, the case that a PM doc oversees treatment for CRPS. There may also be other treating members of the person's care team, such as PT, OT, Counselor and Primary Care Provider.

Although folks with CRPS can share similar symptoms, how you and your body react to CRPS and how it is treated for you is strictly an individual thing. That being said, there are treatment options to select from and if caught early, treatments can put a patient into remission or significantly reduce pain. Your CRPS being diagnosed last month is awesome!

Please be careful with the internet (which of course was the first place I went to look for info too) as usually you find worst case scenarios and pictures without the benefit of seeing mild cases. Yes, there are people whose CRPS spreads to other limbs, have limbs that can no longer function and other things you probably saw but for you, that doesn't mean it spreads any further or gets severe enough to warrant pain meds.

Chloeanne, your symptoms are real, they are not in your head! Some folks do see mental health counselors but others don't need to or don't want to. Again, a very personal decision. A saying you will hear about CRPS is "Mental health issues do not cause CRPS. CRPS causes mental health issues." There is a whole bunch of change that comes along with CRPS, some of which you are experiencing already.

Keep your positive, strong attitude!! I am happy to communicate with you further and so many great people here will do the same.

Let the forum help you!

Deb

Welcome Cloeanne,
I want to jump in to also say I'm sorry for your reason for being here but also glad that you found us.
We're a friendly bunch to visit, get info or just vent. Everyone here will lend an understanding ear and listen to anything you need to say.
Be safe and take care...

Welcome and sorry you have been diagnosed with RSD/CRPS

This is a great place for support and to learn a lot about the condition or just be among people who get it. It is real. You sound strong and positive and determined and that is key. I think only the strong people get RSD because we are tough enough to handle it, lol.

Other people gave good advice and I hope you stick around to get some support from caring people if you need it. I find that I come in and out of forums based on my needs and how I feel. It's good to come learn and meet people, and help others, and also good to take a mental break when you need it because it can be a little overwhelming. You will find the right balance.