Thank you for being here/Newbie/VERY long
 

Hello all -

My name is Vicky and live in Cadillac Michigan. I was just diagnosed today with CRPS type 1. I fell back in January and was diagnosed with a wrist that was fractured in 2 places. Was sent to a local bone specialist. After 2 visits with him, he sent me off for a MRI. About a week later, he called me personally to tell me that I had a torn ligament and he was sending me to Traverse to a hand/wrist specialist. This was about a month after my fall, and by then I was beginning to think that I was going crazy. My hand would swell, turn red/purple and my whole arm up to my elbow was on fire. It was bizarre, and I couldn't figure it out. This far in, it should not still hurt. Let alone hurt more then it did when I first fell. I was beginning to think that I was nuts. I would get comments from people about what a low pain tolorance I must have, even from my best friend. These are the same people that would mention that my hand was purple or red. I saw the hand specialist last week, and spent some time with him at which point he thought that the pain was from carpel tunnel, and wanted me to go for the nerve test. Meanwhile, I was asking my original specialist for a refill on my pain med (vicodine). I get a nasty message from his nurse yesterday about how this was the last time (please keep in mind this was the 3rd script at 30 pills per and 1-2 every 6 hrs as needed since the accident). And if I needed FURTHER narcotics that I needed to contact my pcp or the specialist. Here I didn't ask my specialist last week for meds. I was just trying to ride it out - thinking that one dr should manage my meds. That way there would be no confusion. It was like I was a drug addict. I type alot with my job, and yesterday (it wasn't the first but definitely the worst) day my arm was on fire! Nothing would make it feel better, I was crying - it was just awful. Today, I go to for my nerve test, and see a new dr. She listened, and examined me. At which point she proceeded to tell me that we would not be having the test, that I had RSD and the good news was that we caught it early. Now, tomorrow I am having the first in a series of 5 nerve blocks. Not to mention my mri did show some problems so now I still see the specialist, and have a new doctor. She told me this, and I started to cry because I really thought I was going crazy! She kept saying things like "remission" "agressive treatment" and so forth. Then I came home, and looked it up. Now, I am scared to death and freaking out about the block tomorrow. My other wrist hurts, and has been for a couple of weeks, thinking I was compensating and that was why. Not so relieved now that I have read a bit. More scared than anything. Wondering if anyone else has felt that way? Also, where would you go for real research and to get the facts. Thank you for listening to me. I appreciate it!

Somebody gave me a very useful website not long ago, as I was just diagnosed as well. I had 10 upper extremity surgeries in 3 years. the website is called RSDhope.org it is very helpful and full of information. Try not to overwhelm yourself in one day trying to learn all of this, I check a little each day, but mostly try to get involved in communication on the forums with others who are living the same nightmare. I am supposed to get some nerve blocks as well, not sure when and not sure I will do it (just my choice...petrified of needles). good luck and keep posting!

RSDS.ORG. Is an awesome website. Lots of good stuff.

Early diagnosis is good - with aggressive treatment your chances of remmission are high. many of us go years without anyone figuring out what is wrong with us, or with bogus treatments that make our RSD worse.

scroll through this board, there is a lot of great info here.

the best of luck to you, Sandy

Hi Cadillacgirl70,

Welcome! THis is great site with so much information and very nice people.

Each of us have had the same day you just did when you get that diagnoises and we go home and go on the internet and freak. I still remember how I felt and that was 6 years ago. But on the good side you are getting treatment in the early stages and have a good chance of remission. The blocks you spoke about I am assuming are stellate ganglion blocks which I believe is the normal protocol for early stages of RSD for the upper extremety. My RSD is upper extremety also and I have had these type of blocks many times. There really no big deal and go very quickly and yes I did get relieve from them. I like the fact that she did not proceed with the EMG nerve test, that would of been very uncomfortable for you.

This is a strange disorder and I had never heard of it until my accident. But with the proper care it does get better.

As far as the pain medication in all honestly that becomes your biggest issue with the doctors. It's best to get in with a pain management spec. Doctors with that kind of training are the ones who do the blocks and understand about the medication. PCP, and others are afraid to write rx's on a continuing basis for narcotics because of all the abuse that goes on. Myself I believe the less the better.

I wish you the best and keep us posted.

Gabbycakes

Dear Vicky

welcome and i am so sorry that we had to meet this way. all of the folks here are an amazing support system. ask anything as little or big questions...someone here has an answer. it is so frustrating dealing with some doctors. if you dont like who you find, keep looking until you find the right one. i am on that search for myself right now.
blessings
Lori

Hi gabbycakes,

please enlighten me on these SGB...i have found no one who will give me the truth as experience, they just keep saying google it, which i have. my CRPS is upper extremity from 10 bilateral hand surgeries in 3 years. i am afraid of needles and especially since i read they go through the front of the neck, is this correct? please give me the whole step by step process!!!

Sonny1

Hi Vicky - I have family that lives up near you. They are in Lake City and Merritt. I grew up in St. Helen :) .

I am currently living in Eaton Rapids. I hate RSD - I was in an auto accident in 2007, injured right foot and knee, had surgeries on my knee and foot, nothing helped. Diagnosed with nerve damage, had blocks, had a Spinal Cord Stim implanted (twice :( ), tons of meds and creams, doing blocks again as the RSD is now taking my back, neck, arms and fingers. Starting P.T. on the 22nd of March to help see if de-sensitizes will help. Waiting on a call back from the Cleveland Clinic to see if they will accept me as a patient.

My suggestion to you - READ everything you can!! Research, ask questions! Get other opinions if you have the insurance/options. Check out the University of Michigan's Pain Clinic or go straight to Cleveland.

RSD is scary - it's a hateful, spiteful, mean monster. While I was "being greedy" and wanting to be rid of the pain in my leg and foot and saying it would be easier to deal with "it" in an arm (I miss walking, driving, etc), I didn't realize (or understand) that it would take over everything.

I understand that everyone is different, they are affected differently, respond to treatments differently, but make informed decisions. If the blocks don't provide relief, look into other treatment options quickly but precisely. One wrong decision (like mine), and it can anger and awaken the monster to a point that your life is "over" and you are just watching from the sidelines.

If you can get it manageable with meds and blocks, be happy with that. Check out the risks on "improving" the condition.

I don't want to scare you. I just want to help you understand that it is a long road with many tough hills to climb. This forum is a great staircase to help up those hills. :hug:

Re: meds
 

Hi vicky, glad you found this forum. You will find alot of support and information on this site as you scroll through. Yes, some drs. treat you poorly thinking you are a drug addict. I take ms contin, and the pharmacy gives me looks all the time. You are not on alot of medication eithor. I hope your pain resolves with the nerve block. I had something like that, and it wasn't bad. I don't like needles eithor. It was also good news that you didn't have to have the emg nerve test. I refused that test stating I was not a cow, and had no wish for a cattle prod. I am not a cooperative patient sometimes. I got through my troubles without that test. Hope this problem resolves quickly and that the pain will leave with good treatment. ginnie

follow up
 

Thank you for your responses everyone. The first block went well-they gave me some help (gotta love twilight) and it was much easier then I thought. Immediate temp changes, and relief. Going back on wed for another one. Apparently I am going to have 5 of them over the next couple weeks. What was interesting to me is that now my hand is sore and definitely more in line with the original injury versus this unrelenting pain. Not to say I am pain free-but definitely better! yesterday was a bad day specially since I had to go to work and explain to my boss that I would need time off to have this kinda stuff done quickly-but she was more understanding than I thought.
Everyone thank you for your kind responses, the website was great and I know now I am luckier than I thought. Expect to see me around! Because I have a lot of questions. I will be praying for relief for you all.

Vicky