Hey all,
I just want to ask a quick question cuz I don't want to take up a lot of you alls time. My legs have gotten worse as far as the pain goes it has gone from mm feet and lower legs to just above my knees now. My original injury was to my left hand which has been diagnosed with rsd from my left hand to my shoulder. I have the same pain and reactions in my right hand as well as my lower legs and feet. Like I said now the pain has moved to just above my knees and I have a hard time putting any sort of pressure on my legs and feet. It started yesterday just above the knees and I figured probably just a flare but it is the same today as yesterday. I am scared because I have not been diagnosed for my right hand nor my feet or legs yet. I am waiting for my atty. to tell me it is ok to see a doc. My authorized doc acts like he don't want to see me even though he is the one that finally diagnosed my rsd after 3 years of struggles. Now he is telling me that they don't deal with legs of feet. So I question what does he do when he treats other people with rsd and it spreads on them. I don't know anymore. I am so confused. Also my daughter and her boyfriend put my walker up for me today and told me to try that and see if it is any easier to walk with. I was so scared cuz I am not ready to see the reality of things that there is a chance I am getting worse. One good thing that came out of it is that I found out my daughter is not ashamed of me even when using the walker. I have not been out in public with it yet and I am scared to death. I feel like I am going to such an outcast and that things are going to be even more real. I don't want to feel that way. So I am really struggling with this whole walker idea. Has anyone else had to use a walker or felt like an outcast? Has anyone ever been afraid of the raeality of things. I know I have been fighting rsd since 2002, but everytime a new reality shows up especially one as big as this one it is so hard to accept myself and the reality. I am so afraid that people are going to look at me and laugh. Or maybe even not love me anymore. I am so scared of all this reality. I know a lot of you are thinking that this is no big deal but it is to me. I am still struggling with the idea of having this disease and now this. I am so afraid of losing all the ones I love and care about due to this. Please help me try to get over these fears?!

Sincerely,
Tracy

Tracy, I think that you should go to another Dr. What is your Dr. thinking? Dosn't he or she know that people that have RSD can spread to any part of our body's? No wonder you are terrified! Do not be afraid to speak out and find someone who is willing to listen to you! I have never heard of any Dr. that will not treat one part of the body and not the other? Do you have a Neurologist that you can see? Or an Orthoepist (SP?) Please Tracy what ever you do breath deep! Do not give up we are here for you! Always Breezy55

Tracy,

It seems a new doctor is called for in this situation. Try to relax, as stress brings more pain..easier said than done, I know.
I have had doctors that flat out state that RSD does NOT spread!!! What rubbish..we know better.


Dew

Hi Tracy,
I'm so very sorry you are being slammed with this reality or at least set
back. You are being hit in the face with possible reality of possible partial disability and that is scary. So you belong to a support group?If you look up RSDSA and see support group on the left, push that and a area will come up to put your zip code in. It wll give you closest phone number and name to call. They will tell you a contact name and number. You need to talk to someone that has gone thru this transition. I don't know, but you may have been raised with the idea that crippled people are 'less than' maybe you have hearad negative comments about people that are crippled etc. That impacts us and puts fear in us of being 'less than' 'not accepted' 'not loved'' 'like you said embarrassing to our loved ones'
From attending a support group, we can learn the names of Drs. that deal with issues like this. Calling the local hospital and talking to the education department, may lead to an upcoming seminar dealing with issues like this
Having a counselor can be life altering. I have had two wonderful counselors. One in the 80's when both my parents died young for 2 plus years. Going sometimes 2-3 times a week. And about 5 years ago, when my neurologist diagnosed me with generalized or full body RSD. I didn't like his two recommendations, so found my own. If fact, in the 80's I searched.
Having RSD and spreading is actually dealing with a major life change-grief- Even going to the self-help section of a book store can help. We go thru the 5 stages of grief, as does someone who has a loved one die.
I'm going to buy the book by Michael J Fox 'Always Looking Up' about his adjustment to Parkinsons Disease. He hid it for years, until he couldn't hid the shaking any longer. He went public and talks about his coming to acceptance, and now helping others. I'm anxious to get it.
It's wonderful you are honest about your feelings. Have you ever journeled? That can put us in touch with our feelings, identify them and learn how to work thru them.
Please know we are here for you. If your Dr. sounds like he doesn't want to see you, he probably doesn't. Get a new Dr. That's where local mingling can help to know who is good and who to stay away from. There are many Drs. that don't want to be involved with patients with RSD> Do you have a sports injury group near you? National athletes? College athletes? Do you live close to a group? Calling a local hospital, education dept. can sometimes be helpful as they have commuity lectures of different areas that can cross over and be helpful to us. Take care, your friend loretta soft hugs

Dear Tracy -

I am so sorry to hear what you've been going through. Joining in the "get a new doctor now(!)" comments, I wanted to bring to your attention an online directory of board certified pain management physicians maintained by the American Board of Pain Medicine, where you can search by your geographic area and/or a doctor's "specialty of origin." http://www.association-office.com/ab...dir/search.cfm

Unlike another certifying organization of which I'm aware (that has no standards to speak of) this is the "real deal," where not only must an applicant complete a residency or fellowship in pain management, but s/he must then sit for (and pass) a comprehensive 8 hour written examination. In fact, this is the organization that supervises and accredits pain management residencies across the county. (For more on their bona fides, see http://www.abpm.org/about/index.html.)

Putting aside your mobility issues for the moment, right now it's time to let your fingers do the walking.

Mike

Tracy
Im sorry to hear of the spread,,,Id pray to the Lord for guidence,,,seek another dr,,your not an outcast,,God doesnt make junk,,God also says that diligent hands rule,,,,your in my prayers,,,im presently going thru the same thing,,I have 3 of my dr;s wanting to get rid of me,,you can see it in their actions and lack of concern,,Its pathetic that alot of dr;s and people have let their own hearts to become callous and hardened over selfish, egotisttic and arrogant ways to follow there own inclinations,,,,its not just drl;s it everywhere,and mistakes and miss diagnosis arent mistakes,,,its neglagence,,,,That why my Hope is in the Lord Jesus christ ,who is the true physcian,,,,dont give up,,seek the lord and another dr,,,please read proverbs 3:5-6 and psalms 37:4,......................bobber may God bless you and cast out all fear,,,

Hi Loretta,
How did you go about searching for a psychologist that had knowledge of RSD? The closest support group to me is about 1 hour away.
Hope

I don't want to "popularize " this, but the rsdsa.org will accept you as a member, even if you can't afford it.
Send an email to Mr Broatch!
He's the man!

pete

Hey all,
Once again thank you all for your help and support. wc is so strange.
I got fired from my job back in 2003 because I brought permanent restrictions in from one of many docs and they said see ya cuz they couldn't abide by my restrictions. I have tried to get a job and have had no luck. I went back to college hoping to help myself get a job. I went to college for becoming a Health Information Technologist. I have tried to get a job after college and still no luck. I stopped looking because I could feel myself spiraling backwards. I didn't want to be there again. I am still trying to climb but am really struggling to do so. I did settle out of court 2 yrs. ago with an open file, but wc has not paid for any of my meds or doc bills since we settled. Now we are going back after them again for not doing as was agreed. It all went through state and everything. But I am still fighting. I have been fighting wc for the last 6 yrs. it has really been a struggle but so far I am making it. I am not sure how since we are living on my hubby's income but we are. I have tried to get disability and have been denied 6 times and I now have another atty. to help me appeal that. So it just seems like fight fight fight here. I get so tired of fighting for everything but i am not a quitter. I keep going after what is rightfully mine. So I guess we will see how it all turns out.
Again thanks to everyone and you all take good care of yourselves.

Sincerely,
Tracy

Tracy....WOW I cannot imagine going through all the legal BS that you are having to go through. I wish I had some words of wisdom in the department, but I do not...sorry. I do however have an idea about your family situation. I am very new to RSD and have done some research and bought some books on it. I plan on sending one of the books to my husband in Iraq, so hopefully when he comes home he won't be quite so shocked to coming home to a "different" me. It is a VERY readable book, and does not have a whole bunch of medical jargen that leaves you feeling stupid and like "huh?" Perhaps if you got your mom to read it she might understand a bit more? It's called Living with RSDS, your guide to coping with RSDS and by Linda Land and Peter Moskovitz, MD. Hope this helps even just a little. Hang in there, I know that you're trying.