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,,,

Dear Tracy,
First, thank you for being so brave and expressing your fears and your emotions so honestly and so deeply. I am sure that you are expressing the fears and worry that many of us experience and grapple with. Some are more private about expressing their fear,while others are more at ease sharing those thoughts with everyone.
I am certain your daughter and loved ones will love you no matter how you feel or look..When love is genuine, it endures all.

I used to feel embarassed when I used a rollabout (knee caddy) and crutches, and when I rode the handicap carts at the store. I understand how you feel so well...Now I use a cane and at some point soon I will need a mobility scooter..so I know how you feel about the walker..there are some things I still can't accept about these changes in my life, and some aspects that I must accept out of necessity. I feel like an outcast in that there is so much I can no longer do, and often I feel alone because I am left out of events and activities that I simply can't handle because of mobility, pain, etc.

But in time, I hope I will be able to come to terms with my new life and my new self and look for aspects of it that are good. I hope the same for you.

I hope you are able to find a support group, or can get help from a psychologist who specializes in RSD and chronic pain. This is a disorder in our lives that has a painful emotional impact., and the reality is overwhelming..please don't feel alone in having those feelings of fear and worry..I know I, and many of us, are going through the same thing. I have been to a couple of support groups and have started a series of classes called Mindfully Based Stress Reduction. We learn ways of dealing with chronic pain and emotional changes in our lives. I have met some good friends there and i don't feel like an outcast with them, and I am beginning to find some strength.

It's time to see another doctor who will care about you and who will take your concerns seriously...I am relieved that you have an attorney who is working with you and will help you see another doctor...you'll feel much better once you have a doc who is willing to listen to you!!
I am thinking of you and hoping you will find a doc soon who will help you...
It sounds like you have a very loving daughter
Many warm hugs,
Hope4thebest

Tracy,

Try and go see a pain management specialist or neurologist if you can. Orthopedists tend to know fairly little about this condition in the sense of having it treated and diagnosed, at least in my part of the world.

It is a stressful situation, but you have to clear your head right now. Having another doctor take a look at this is key right now, and please do this asap - before it's too late.

Tracy,
I agree with all here, who say time for a new, or new set of, doctors.

I also think that by you, getting on the phone, internet, doing what ever searching you need to do, to find the best in your area, then following through, (there will be rough spots) to getting appointments, and being seen, will do a Lot for your family's focus on you.
Take it upon yourself to find the proper help, and, they'll be happy for that and for you!

Unfortunately, when we seem helpless, that's the way we get treated.
So, do the most you can, and pray for help.
You'll get it when you need it!


Pete

Hey all,
I just wanted to thank you all for your support and your help. I appreciate it more than you'll ever know.
I have a problem though with seeing another doc right now. i am still in the middle of a lawsuit with wc and They are the only ones that can say who I see and who I don't because I can't afford to go to far out on my own. I can't get health insurance ever since my injury and dx and the meds are just sinking us because wc renigged 2 yrs. ago on our settlement of an open file so we are fight them again. I am on 6 or 7 different meds and living on only my hubby's income so we are really starting to sink. So its not easy for me to be able to get another doc not at least until the atty. says I can see someone else that wc will cover.
As far as my walker, I went out in public today with it and it just seemed I had all eyes on me and it was kind of embarassing. I felt like I didn't belong but I kept with my chin as high as I could keep it considering the circumstances and kept going about my business. I did hear a couple of comments but tried to let them go. Was very hard but some how managed.
I am only 36 yrs. old and feel like a total outcast. While trying out the new walker I realized it might not work because it does take some pressure of my hands even though it does have wheels and my hands start to hurt after a bit of usage so am not sure what I am going to about that yet.
As far as family goes that is another story in itself. I am talking about my side as far as mom dad and sisters and brother. I had a conversation with my mom yesterday and told her how she was making me feel by leaving me out of some of the new adventures her and my sister went to. For example to the nascar races (no I am not a real nascar fan but neither is my mom) but it is something different, to wrestling in Cedar Rapids,Ia and to my younger sisters house which I have not been to since she has moved 6 months or better ago. She lives in Williamsburg, Ia and I don't know how to get there so i would follow my mom but of course no invites. To make a long story short, my mom told me that yes the reason she has not invited me to different things is because of my disease. Now if that didn't cut like a knife I don't know what would. I told her to let me make my own judgement call on whether I think I can do these things or not instead of her trying to make the call because she knows nothing about this disease which is true cuz she has never researched it. So I don't know if my family will ever accept what I have or not. I guess sucks to be me! Life hurts sometimes but some how some way I need to find a way to make it through no matter how hard it gets.

Thanks again for all your help and opinions. it really helps to know you have friends out there who care. Thank you to all and may God bless you all.


Sincerely,
Tracy