Finally dx with RSD/CRPS after 7 mo.'s of hell!
 

Hi everyone! I have been visiting your site for sometime now. Love all the advice, comments and support! I'm a member now! I have been through the mill the last 7 mo.'s dealing with 4 different doctors until my neuro finally said it was RSD/CRPS. I have been surfing the net all these months, trying to self diagnose because the doctors didn't seem to be in any hurry to find out what was wrong with me! One thing that has really pi**ed me off (sorry but I am really saying that nicely) is at the end of Feb through March, I was seeing an ortho and I had read up on RSD and mentioned it to him but I guess it didn't matter?! Nothing was done...then my Neuro that I have been seeing regularly, every month mind you...saw the boot that was prescribed by ortho and came unglued!!!! And that the MRI's that the ortho was ordering for my left foot/ankle and both knees was a COMPLETE waste of time! He said that they were not going to find anything wrong with me...being a SMART *****! I told him straight to his face he was wrong and I know there is something wrong with my foot/ankle and knees FORSURE! I know my body and this isn't normal. Well, the MRI's showed bursitis at the Achilles tendon in left foot/ankle as well as in my left knee and Chondromalacia with fluid in both knees too. He has to this day never acknowledged the bursitis as a cause of the RSD but it was the boot that mt ortho put me in?! The boot caused the nerve damage! OMG! Well, I have been dx by him a long time ago with sensory neuropathy and foot drop with absent reflexes. I convinced him to do another EMG and NVC and low and behold there was more problems...like I have been saying all the months! He then ordered another MRI for my back because my test showed something coming from my back. So, now we have come to the RSD/CRPS dx. MY left foot/ankle has been swollen and moved up to my leg to my knee and I my ankle is now frozen with my 4 little toes squeezed together and contracted up towards my leg and is so reddish/brown blotchy is horrible! Well, going to try Phys. therapy for a month to see if I can get any mobility back from my ankle. I have to walk on the outside of my foot (strange) but it the only way without EXTREME PAIN! I know it hasn't helped but what could I do all these months?! Say A prayer for me and hope I can get some mobility back in my foot. I just recently started my SSDI and just got back the Adult Function report with the Work history report to fill out now. I have seen some say that this could be a good sign...that its being considered?! I'm doing it myself w/o a lawyer for now. SORRY FOT RAMBLING ON!!! Does anyone have any advice etc. for me? Oh, I'm a 45 yr old female from Texas soon to be 46 in Nov. I would appreciate any comments or advice. Thanks for listening and God Bless yall! :grouphug:

Welcome! So...is a chiweenie a Chihuahua/dachshund? :)

I am also new to this. I was diagnosed in 2010 after I was pinned between a car and a 4 wheeler. I was standing next to a car when someone struck and pinned me with a 4 wheeler. I had compartment syndrome. I had 2 surgeries releasing all 4 compartments and was diagnosed with CRPS. I struggle with it everyday. I did have a SCS put in November of 2012. It does help somewhat but I still have all of the time just sometimes more manageable then other times. I am now diagnosed with Plantar Fasciitis in the same leg. I feel like I am starting to be sad and frustrated more. Thanks for listening

Hi "from Texas", I won't even try to type your name. A lot of us know the frustration of docs not listening to us. I got in a huge verbal war with a doc one time, which is totally out of character for me. It was only after he cop'd an attitude with me and said "And how many years did YOU spend in medical school?" To which I replied, "More years than you have spent living in my body." I never went to him again. I used to have the utmost respect for physicians until I encountered a few that certainly did not deserve it. Thank goodness there are a lot of really good docs out there. I currently have 3 docs that are fabulous, and one that I am replacing as soon as possible. The first time I saw the one I am replacing, I did not like her at all and she seemed a lot more concerned with things outside of her specialty than appropriate. I gave her the benefit of the doubt thinking maybe she was having a bad day. The second visit was not only not any better but even worse. She will not have a third time to stike out with me. I am already seeking a replacement. She is an eye doctor and was much more concerned with my dermatology issues than my vision. And to make matters worse, she was telling me to do things that were contrary to what my dermatologist had advised. My fabulous docs are my PCP, my pain management doc, and my endocrinologist. My cardiologist is excellent but could have a better bedside manner. My neuro retired and the next two I encountered have been OK but nothing to write about. I have a few other specialists that are good but nothing to brag about. Finding a good doc is essential to good health and care.

Greetings!!
 

Thanks for the welcome and YES chiweenie is a Chihuahua/daschund! Her name is Harley but some how its graduated to Harley Sue. lol It came about one day, kinda like we do with our kids when they have got into a lil trouble. Ya know.. we say their name and middle name too. Well, hence Harley Sue has stuck. She is 3 1/2 yrs. old and the joy of my heart! My son too but she's my girl! Its funny because my son always says that she is his lil sister! Obviously he is an only child but not anymore since Harley came into our lives. I just love her so much! Thanks for asking. :D

Most of these doctors just treat us like a number and forget what it means to be a real doctor. Don't they take an oath? It's all about the money now! Thank goodness you found some good ones. Its nice to hear that! Terrible when we praise doctors for what they should be doing to begin with and FORSURE what they get PAID for!! Now that's a whole new topic! You are one of the lucky ones. Take care of yourself and talk to ya soon!

It gets better--our cat's name is Cindy, but when she's in trouble I call her Cindy Sue. :D

Has anyone tried Ketamine infusion? I have had RSD/CRPS for 5/6 yrs following a severe blood clot, groing to ankle. Now it has spread to the other leg. My pain management Dr. is suggesting I go to a Dr. at Cleveland Clinic for Ketamine infusion. At present I am taking 2 ml. orally at bedtime & 10 mg. methadone. I can honestly say my pain level is lower. Anyone else ever tried this?

p.s. Blessings2you I love your inclusion of scripture.

Hello GreatGram
 

I had several Ketamine infusions. It was not for CRPS but for Cervical issues. This medication really helped me for a number of months. I have also done some research on it. This has been used for CPRS extensively for our troops who are injured. There has been good success, and reports of remission. Finding a location that does them seems to be the bigger issue. JAMA, a medical journal has frequent articles about this medication. I wish you all the best. ginnie:hug: