Great new Doctor...Horrible, Depressing, diagnosis of spread
 

I'll be positive and start with the best part. My first appointment with the new Crps Specialist was amazing even though the diagnosis was depressing. Dr. Edinger told me she spent her entire medical education/residency/practice on learning about and how to treat Crps and she learned how to do the most gentle physical examination/refusing to do anything to cause more pain!! I was stunned and extremely thankful to finally have that kind of doctor!!! And finally I have a Dr. that knows more about Crps than I do!
It's a true relief to have every symptom, pain, twinge, question be explained confirmed validated. So anyone who lives close(or willing to travel) to Spokane Washington(state) area, try to get referred or transfered to Dr. Laura Edinger of Rockwood Neurology. I would honestly recommend her to anyone suffering from Crps. She had me explain everything that happened during the injury though now, but did it in a way where I didn't have to go through every tiny detail, while still getting the most important informational . It was wonderful to have all my symptoms/pains/worries be explained/validated!! She spent a lot of time with me going over all questions I had. And gave me real tretention options and explained the benefits or downside of each and every one! She really madepends me feel involved in my treatment plan, and really seemed to try and do her absolute best for me. She just seems to have this energy or passion this fire desire to find a way to help you fight this monster called Crps, and get your life back! The exciting thing is, I think with extremely hard work, self-determination she can

So now for the really bad, depressing news....
You all know from my last couple of posts that I was sure that my Crps had spread to my legs, my new Dr definitely confirmed that.however that's not all....

Earlier this year I was starting a new job as a Frontdesk Clerk/Night Auditor at "The Best" (not to their employees) hotel in Spokane. I chad to write down a ton of step by step instructions. There were at least 8 pages. Plus all of the programs and reports I ran. The computers I used for all of this were encased in an enormous, gargantuan Italian Marble L-Shaped counter. It was very tall (beautifully made really), and the keyboard was set beneath the surface. Because of the way it was setup, I had to hold my arms do been upfront regarding my Crps & limitations & hands in a very awkward position. I had been upfront when hired re my left hand/arm and limitations with Crps, however all the things I was doing were actually making my RIGHT arm and hand go numb, tingley, and start having gripping issues. It got so bad for a couple weeks, that it would wake me up from a deep sleep and would make me start crying. I talked to my doctor about it and he thought it could possibly be carpal tunnel or just overuse. Also during all that my feet/ankles/calves were painful, sore, and seriously aching. It was so bad, I would come home and just wrap my feet up in icepacks for hours. I thought it was just from not being on my feet for work (8-10hrs depending on the day), and that it would get better after a few months.
My legs and feet got a little bit better after a while, and my hand stopped going numb and everything else after I stopped having to write so much. Then after almost a month of my legs & (right) hand stopped hurting, my feet were suddenly extremely painful and a little bit swollen. Then after a few days like that, I had been working long shifts, both of my legs & feet swelled up so bad and were so extremely painful, I couldn't even walk more than a few steps without crying! My doctor had me go to the E.R. but they couldn't "find" anything wrong. Though my feet were so swollen the hospital slipper socks for obese people had to have the top band cut off and the side slit open just to get it on my feet.
My doctor diagnosed plantar facitis...not!!
Anyway long story longer. ..
I now have Crps in my legs , left arm, right arm, bladder and have been told I can no longer work at all. The new doctor even said that I can NOT clean, cook or anything like that at home and am to drive as little as possible.....

So yup I am close to now having "Full Body" Crps.....and am now "disabled" which makes sense as I can't walk very well art all. My daughter's birthday is coming up, followed by Thanksgiving & Christmas.....happy holidays! You can't work now, and can barely afford your bills with what your partner makes, let alone what winter bills will be, so just forget presents for the kids. Oh yeah, your "partner" is also going to blame you for your injury that caused the Crps in the first place! You didn't have to go to the E.R., you only had a "bad period". It didn't matter that you were passing blood clots the size of your palm, or that they found a uterine fibroid....you just want the attention? .. and your partner is also "sick and tired" of hearing about your pain all the time, and issues done with the "whining" and maybe we weren't "meant to be" and that he should just leave.....
God...isn't my life just wonderful?....oh that's right it's not....it doesn't even feel like my life anymore.....:Sob: :Sob:

It's great that you found a doctor you trust and that can help. The rest sounds miserable. I can only hope that you and your husband can find some relief, joy and strength.

You now have a workers comp claim (if you didn't already have one) simply because your job aggrevared your pre-existing condition. Good luck!

I am glad you found a really good doctor. AS for the rest of the story. I am sorry to hear that and will be sending good thoughts and vibes your way. I will remember you tonight in my prayers.

Oh CRPSSongbird it all sounds so overwhelming and disheartening right now. My heart goes out to you. Maybe there is still a small hope that this spread can be reversed as it's early days? You were asking about others experiences in another thread. I have CRPS2(18yrs) left arm, back, face, bilateral thoracic outlet syndrome and nerve damage to brachial plexus. It was 3 Years ago now when i started intermittently losing blood supply and pulse in good arm when using it in certain positions. Surgery went badly came out with damaged nerve root looked like i'd had stroke floppy wrist and some fingers thumb not functional. OT used resting splint on hand/wrist despite my protests. hand blew up with CRPS. Arrogant surgeon who denied any responsibility said unless i had inpatient rehab would probably lose use of arm, aleady had only partial use of other one. So my husband and seven year old had to fend for themself while i had about a mth total inpatient then about 6 mth outpatient. Changed splint to dynamic splint. emphasis was on lots of OT and PT later added in hydro. had to have high levels of medication to manage the pain to get arm moving as combination of nerve root and crps pain was incredible!!! Had to relearn simplest things like brushing teeth and using spoon. would have to have pain meds working before attempting anything in am. fortunately, CRPS spread resolved left with some nerve damage in right armhand. i also let them repeatedly put ice on arm in hospital. definite no for CrPS. On high meds. it's hard to remember to advocate for self.when well meaning nurse recommends ice. If you're not on vit c it's the only thing recommended in literature for preventionof spreads must be at least 500 mg day. Strangely I kept telling my left arm thank you for helping but my right arm can do it. i am still rh handed etc. i think this was really important. the not knowing is so hard. I remember my rehab specialists 1/5 rule when i relapse increase activity by a 1/5 when you master it at a certain level. eg 5 mins walking becomes 7 mins . sounds like you have a good specialist you can trust. hope and pray you get the practical support and progress you need to get through this tough time one day at a time. take care booklover ps don't feel guilty the CRPS is not your fault