Quote:
Originally Posted by aj822
I am new to this forum so please forgive me if this is too long and boring.
I guess I just need a place to express what I have been through to others who have already made this journey. I need some way to let this out!
I was recently diagnosed with RSD after 2 1/2 year battle with a serious knee injury. I know now that RSD had set in after my first surgery, but my former doctor had no clue. He told me nothing wrong with me and that he couldn't do anything else for me. I set out for a second opinion knowing something was wrong! I found a great Ortho who had to perform two additional surgeries on my knee but he caught on quickly after my third surgery that I had full blown RSD, referring me to Pain Management Doctor. I went for my initial visit which was both psycological and medical exam with Pain Specialists. They confirmed 1) I am not crazy! 2) I have RSD with nerve damage. I have since had a sympathetic nerve block which appeared to have helped for about 5 hours. I am waiting to be scheduled for the actual block.
Left leg from hip to toes... cold cold cold, purplish, shiny and very little hair and nail growth. I have spasms just below my knee and feel like ants are crawling on me most of the time. I take Lyrica, Effexor and Talwin NX daily.
After researching this EVIL disease, I am amazed how uneducated the medical community is but how the public has no clue. This disease has changed my life completely and has tossed me into a state of mental exhaustion. I can't walk with my crutches, have to use a wheelchair and I never know if my meds will let me function or if my leg will keep me in bed.
Family is supportive but they really don’t understand what I am going through. I am only 43 and determined to beat this! I need a group that understands because they are suffering too!
I hope I can bring something to the forum too! Knowledge can be the best medicine!
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Hi AJ822, and welcome to your new family of compassionate caring friends. Please don't ever feel what you have to say or ask in boring or too long. We all have times when we are in flares or whatever where we can't respond as we would like, then other times we can be pretty gabby in our replys!
I so sorry about your RSD, but at last, you are diagnosed and can now deal with it. It was 4 years for me to get diagnosed. It's full body and 13 years now. Thankfully, I did get physical therapy right after my surgery that caused the RSD and massage therapy. I do have partial paralysis in left hand, but thankfully other limbs mobile. I swim dailey and stretch to keep mobile. Went thru desensitizing, so that was worth all the torture during the therapy.
Have you had physical therapy? I do hope you are able to get out of the wheelchair.
I was on Neurotin and then Lyrica for several years. They stopped the jerks, electric jolts, spasms, etc. but caused weight gain. I slowly went off with my Drs. oversight and it's gone well. I'm surprised all the spasms didn't come back like I thought they would. I've had a couple during extreme stress of learning of the death of a friend. Cymbalta has helped me with the nerve pain and Vicodin for the pain.
Do you have problems sleeping? Several of us do. I'm hoping the swimming exercise will help me with that. I am sleeping better since I started swimming.
We live in Arizona, so the swimming has been helpful. GotRSD while living in Oregon. Alabama is a beautiful state- we used to love to go down to Destin.such a beautiful white sandy beach.
The RSDSA just had their annual meeting here in Arizona and I got to go to it. Was wonderful. More educated Drs. learning about this devastating disorder all the time. They said 50,000 people get this every year in the US. Hope more people get informed! Sooner getting diagnosed the better.
Legally, we have two years from when we get diagnosed to file for compensation, if that is an issue. I didn't, but I was pretty naive as to the consequences monetarily and healthwise, family suffering, our own emotional toll and expense of ongoing care.
Hope the best for you and again, welcome, and let us know how you are, please, we really do care for one another. Your friend,loretta
