Diagnosed with RSD today
 

After 17 years and many doctors, I finally got diagnosed today. Mixed feelings because I don't want to have RSD but glaad I know what's wrong with me.

I had the same "mixed feelings" when I was diagnosed. I remember that day as clearly as if it was yesterday.

It took me a year to get a diagnosis (after umpteen doctors) , a year to figure out how to best treat it, and another year to apply my comprehensive plan to treat it and get it to settle down a bit.

It's quite a journey, but there is hope and things can get better. Use this forum to educate yourself, for support, and if you ever feel the need to vent!

I am sorry to hear your diagnosis. But I know you are relieved as I was to actually have a name to the problem. I cried and cried when I read about rsd and that this monster is incurrable. (can go into remission but you always have it)

Thanks. I'm so glad I found this support group. I've been googling and reading everyone's posts on here. Dr. wants me to do ketamine IV treatments. My insurance doesn't cover them and I have no money to pay for them. Very depressed so Dr. gave me a script for Cymbalta. Got it filled and starting it tonight. Pain is so bad at night. My swollen feet are elevated. Dr. said the RSD is in my whole body. :( He told me I cannot work like this and suggested I ask my family Dr. to put me on long term disability. I've been on short term since April. Two years ago, I was out on disability for six months. No one knew what was wrong with me back then. I've missed a lot of days from work before and after my first disability of six months. I don't know what to do about work. :(

My husband was in the room when Dr. examined and diagnosed me. I think he finally is understanding the pain I've been in for years. He has mixed feelings too. I haven't told my five children yet. My oldest who is 17 graduates on Thursday and I don't want to upset them so waiting for Friday to explain RSD to them. They know something is wrong because I'm rarely out of bed for long.

Thanks for all your support. Gentle hugs.

Me too!
 

Oh I so appreciate how you feel! I was diagnosed 2 weeks ago and I still can't get my head around it. I wonder if it's a mistake but know from my symptoms and the research I've done that it must be true. I live in anew Zealand and I've only been given mild antidepressants to relieve pain and blood pressure patch on the knee to reduce blood circulation & inflammation so I can use it more easily. Not sure that's working yet! Is yours in your foot or knee? Hope you get some relief soon! :)

Sorry that you have officially joined the CRPS club but at least after 17 years you know your enemy and you were able to be evaluated by the top CRPS doc in the country in fairly short order.

Would you mind sharing how you experienced Dr. Robert Schwartzman and other details of your appointment for the benefit of others who are still on the wait list? How much time did he spend with you? What suggestions did he make regarding your treatments? Any other info you could share would be very helpful.

Better days are ahead for you!

I would recommend you investigate and file for Social Security Disability Insurance (SSDI) From your description and the professional opinions, it really does sound like you qualify. You'll need a letter from a doctor (best to use the one that is most familiar with your condition and is the primary for CRPS) stating you are being treated for CRPS and in that letter, it must outline functional limitations.

Your options would be to file yourself, use a lawyer that specializes in SSDI or what I did was use a company that provides non-legal representation; even though they're not actual lawyers, the representation was excellent as all they do is represent for SSDI and I was approved on my initial application. But you do have to pay them with proceeds from your award; the amount can vary but it is capped.

There is a specific forum on SSDI within neurotalk. Here is the link.

http://neurotalk.psychcentral.com/forum28.html

And here is the link to the official website for the Social Security Administration. Lots of information in there on SSDI to educate you on the process.

http://www.ssa.gov/dibplan/index.htm

Good luck and keep us posted!

I'm so sorry...17 years...that's a long time to look for answers. Last year my RSD spread and I KNEW that it was spread but HOPED that it wasn't and that there was something else causing these new problems. When it was "official" that it was RSD I was very sad but at the same time felt happy to know what to do for it. Same thing with the initial diagnosis...all this time spent bouncing from one doc to the next with no explanation for some of my symptoms. Then a doc says RSD...I look it up...and it is EXACTLY what I have. All my wacky symptoms explained. Sucks to have it but since it responds to very different treatments than many other conditions it's good to really know what it is so you can start working on finding effective treatments (and stop doing the things that are making it worse like immobilization, icing, etc).

If you cannot work then long term disability is a good option for you I think. If you just got the diagnosis then you really don't know what treatments you will respond to and how well or poorly they will work for you. Long term disability would give you the chance to try out those treatments and then assess the realities of whether you can return to work or not. Don't let your desire to return to work stop you from using the benefits you have at your disposal to focus on your health and getting better. I hated being off work last year but I needed that time to get my health under control and to try different treatments and go through physical therapy so that I COULD return to work. If I went back too soon I have no doubt that I would have been in a cycle of going back for a few months, then needing to be off, then going back, then needing to be off. That situation is not good for anything because you never get yourself in good enough shape to be 100% at work and they can't rely on you at work and count on your ability to be there and do the job. Better to take the time you need to go through all the treatments you have to and then at the end of it be realistic about whether you can or cannot go back to work.

Take care of yourself. Welcome to the group and if you have any questions, need any support, or even if you just want to vent feel free to do so here. We are all here for you.

Thank you everyone! In response to Ballerina, I first saw a nurse who took my height and weight and asked me a few questions. Then an assistant came into the room and asked my sympyoms, when they started, took my blood pressure (my entire arm goes numb and hurts when my blood pressure is taken), and she examined me. Took her notes she wrote to Dr. Schwatzman. He entered the room with six assistants. As he examined me, he was training the assistants and asking them questions. He took this tool and put it on different parts of my body to check how coldness affected my body. On my legs, it gave me chills up my spine and pain shot into my toes. On my arms, it caused pain into my thumb and pointer finger. My feet are grossly swollen and purple in color. He wanted me to wiggle my toes. I couldn't. He had me try to bend up only my big toes and bend the rest of my toes down. That hurt. He pressed on my shoulders, arms, and legs asking if that hurt. It did. He asked me a lot of questions. Told me the RSD is throughout my entire body. Said I would benefit from Ketamine treatments. I then met with another nurse who gave me a packet all about Ketamine treatments. She gave me an appointment in September to see a neuropsycologist for evaluation, an appointment in October for a QST test and a number to call a cardiologist for a complete cardiac write up. All these are needed before Ketamine IV treatments can begin. I cannot afford the treatments. Nurse suggested Medicaid because it's fully covered under Medicaid. But, I am covered through my husbsnd's job. Anyway, I loved Dr. Schwartzman. He was very nice and showed compassion. He was very thorough with his examination. My appointment was at. 10:00 a.m. I left his office at 12:10 p.m. I would highly recommend Dr. Schwartzman.

Hope this helps. Feel free to ask me any questions that you have. Thanks.

You can file an appeal with your husbands insurance company. Search ketamine, I recently saw the form to use on here. I will also look for you and if I find it I will send you the thread. what insurance do you have? Also find out what your insurance has as a substitute. (they will probably say nothing) If all else fails file a complaint with the state insurance commissioner.