Hi - new here..CRPS 4 yrs
 

Hi all,
I'm new on this forum. Have had CRPS for 4 years now and I know that other people with a disease/condition can frequently know more about it than the doctors we see for it. I developed my rt upper sided CRPS shortly after open rotator cuff surgery. My CRPS has spread to my rt leg and affects my back and neck when I'm stressed out or have extremes in temps. Fortunately mine isn't as bad as many peoples' -and I don't have noticeable skin changes at this point-"just" shoulder pain, extreme skin sensitivity, and sleep problems.

Could be worse.... but I can't do many of the things I used to and can only work part time with work restrictions. Whenever I feel bad about it all I know someone else has it worse and suck it up. My husband understands and is supportive-but no one else understands this disease, because they can't SEE what's wrong or think a doctor should be able to "go in and fix it".
You know how that is. :-P

Anyway-hi all. Nice to be somewhere that people understand it all lol.

Hi pacugirl!

And WELCOME! I am sorry to meet you under these circumstances; but happy to meet you all the same! I'm glad you have found us! You will quickly realize that everyone here is very welcoming and loving. Please feel free to speak your mind about anything you feel. Grammar and spelling are not important. I have made so many caring, compassionate friends here. I wish I could personally meet (and hug) every person on this board. They are closer to me than many of my "real friends".

So, sit back, wait for the posts, and rest assured that you have found a home!

Your new friend,

Kim

hello pacugirl!
and welcome. you will find great great support here. i know we all have. i'm sorry you to have to suffer with this monster. But at least now you have found an amazing group of people to support you, and who really understand what your going through.
my names Taylor. and have it in both legs, back, and both arms.
nice to meet you,
taylor

Greetings!!!
 

Pacugirl...

Welcome..where have you been??..we, our family are happy to have you here and meet you...I am so incredibly sorry to read that your suffer with RSD also..We are all one in the same with that and clearly understand your pain and your needs...Here we just simply care..right from our shoes to the tippy top of our heads and will help you however we can...welcome and it is so nice to meet you..You have a new home..!!

Hugz, Kathy:grouphug:

Hi pacugirl,
Welcome, You have found a great bunch of friends, we are here for hereany question,and I am still kind of new to this, but gotten so much info especially in things the Dr.s may not have answers to. We do understand what you are going thru so its easy to share here. WELCOME!
Your new friend Wendy

Aww, ks.

You are always so encouraging and so very sweet. You have no idea how much your encouragement means to me. You have helped me through the most horrible of days.

I appreciate your friendship. I know that others will also. Thank you.

Kim

Thank you, Kim....
 

Such a very nice post, Kim..I thank you very much for your kind words and taking the time to write them.. I enjoy and care about everyone here... I wish I had a magic wand ..with that wand, I would sprinkle magic pixy dust each of our family members here in order to restore them to new, prior to our RSD days.. If I can make even a slight difference to the better anyone's day then I feel better too... I receive much more love from you all......10 fold!!! Gentle hugz for a very nice day!! Stay strong...and agin..thank you, Kim..you are very sweet...

Much love, kathy:grouphug:

Wow! Thanks for the welcome!!!
 

Wow! What a great bunch of incredibly friendly and inviting people! :D
I will definitely make a home here. I can tell you won't mind a little venting and will share your collective wisdom and varied experience with CRPS.
Thanks for the warm welcome!:D

I realized that I didn't give much background....
I'm 50yrs old, an RN , married, college-aged kids and on this journey with CRPS I've had 3 stellate ganglion blocks, regional blocks, TENS, physical therapy, multiple meds for pain, sleep and neuropathy/neuralgias, 12 wks of CBT(cognitive behavior therapy) chronic pain managmt clinic and other things I can't remember atm. My Pain doc says SCS or implantable morphine pump are my next options -but I'll ride with the meds I'm on for now -less risks and chance of complications -just dealing with good days and bad. My doc has suggested acupuncture in the meantime-if I can manage payments -am not sure if W/C will cover it .
Again-thanks all for the warm welcome and all the greetings!
:D
PS a forum with spell-check...how cool, lol

Hi pacugirl. I am kind of in the same boat. RSD right leg 3 years, no noticeable skin changes .... "JUST" extreme pain. The fire-feeling. My leg has 'cycles' though the day - Sometimes it hurts, sometimes my lower leg is on fire (this is new as of a few weeks ago), sometimes pins & needles, and sometimes it just feels HEAVY. I have been reading this forum forever and decided to post today. I go to school in North NY so maybe we're close to each other?

CRPS Post shoulder surgery -might be near you in NY...
 

I'm lucky I was sent to a that doc dxd crps so quickly, since I don't have noticeable skin changes (yet?). Sometimes I wonder if they messed up my shoulder surgery (open rotator cuff repair along with resecting my shoulder bone, shaving down my collar bone and fixing other muscle ligament problems from years of nursing activities that took their toll -but I don't dare have them open it up to check. "Let sleeping dogs lie" at this point.

I'm Northeastern NY -between the Adirondack Mtns, Montreal and Lake Champlain. Burlington Vt is across the Lake from me (can see from our road).

I also have RSD from shoulder surgery - I injured myself in 11/2006 and had rotator cuff repair in 5/07 and 4/08. I was diagnosed after the 2nd surgery in 6/08. Mine spread first to my neck and head, and then later to my right leg. Numerous blocks and lidocaine infusions didn't do much.

Ketamine infusions have helped me quite a bit, I started them on April 19th - and I am finally back to work. I fly from RI to NJ to get mine, since there is nowhere local that will take care of me. I know there is a doctor in Rutland, VT that has started to offer them - is that close to you? I can give you more info regarding him if you would like, I have a list from Jim Broatch of the RSDSA of ketamine providers in the US.

I am also a victim of WC - I'm a CPA and tore my rotator cuff carrying a heavy workbag. It was pretty difficult to obtain authorization for the infusions. As a matter of fact, my doctor has still not been paid by the Hartford (they suck big time....). But he took care of me Monday and Tuesday of this week anyway with my 21st and 22nd infusion before letting me know my bill was still outstanding and asking me to hand it to my attorney. It's hard to find doctors as nice as that - I was just incrediby lucky to stumble upon a guy that truly cares about his patients (Dr. Philip Getson, Marlton, NJ) and is willing to let the money trail follow.

Good luck to you, XOXOX Sandy

ketamine location, MD, questions and w/c :-)
 

Sandy thanks so much for the info. Rutland is probably 3 hrs from me- and I'll keep that doctor's name in mind for when I want to start ketamine. I've heard on here that people have ketamine injections too. How do they differ in the length of time that they work for you? For infusions-is it a couple of hours (infusion then being monitored)?

The only reason I hesitate at this point with SCS, implantable morphine pump, or ketamine -is that my CRPS sxs come and go -depending on my surroundings (temp), my activity level, if I miss a dose or am late with my meds, and my stress factors or emotions. If all those things are good, I can have good days and feel almost normal. People would think (and might) that I'm faking all of this if they didn't know the amt of meds I take to maintain normalcy.

Re:W/C they have given me the runaround frequently, most often by the looong delay in approving anything we request for treatment. Our adjustor there has a reputation for exactly that. Of course that doesn't help me with a disease that stresses prompt treatment in everything you read.:mad:
The one blessing is that when I did the original injury to my shoulder (tearing the rotator cuff) I wrote up the incident report at work -so they know my crps is due to that injury and have taken responsibility for the cost of any treatment resulting from that injury and the crps now. The catch is that they have to have their IME examine me and approve of almost everything. I'm sure you know that runaround.

I appreciate the info Sandy. Everyone on here is so helpful!:grouphug:

the best info on ketamine infusions that I can think of is on RSDSA.org (a wonderful resource for RSD). There is a search tool. If you type in "ketamine" a list of articles will come up. Robert Schwartzman from Drexel Univ in Philly, Philip Getson of Marlton, NJ (my doc), and Dr. Kirkpatrick of Tampa, Fl are all rather well known proponents of ketamine infusions for RSD.

My infusions take about 3-4 hours. Ketamine has given me my life back, I am off the heavy narcotics I needed to control my pain.

This is the info from Jim Broatch's list that I have for VT:

Rutland, VT Dr. Rob Giering Rutland Regional Med. Ctr.
802-775-7111 need a physician's referral

If you still have good days then you are truly fortunate!! That is awesome!! I hope that you are able to control your symptoms with meds forever. But if things change, and you need to pursue more aggressive treatments, then perhaps the info on the RSDSA website will be of interest to you. There is a ton of good stuff there.


XOXOX Sandy

I was dxd very quickly too. I'm just not happy it's coming back.

I go to school in Potsdam, so that's not too far from me :P