New Girl here with RSD
 

Hello everyone!!

I am 33 years old and been battling with rsd for almost a year now. I develped this from a carpel tunnel surgery. I have Rsd in both of my arms starting from my fingers all the up to about my shoulders. During the day i have pains nonstop in both my upper thighs but goes away then comes back sometimes at night. My upper extremities are always a constant 10 or above. I got myfirst nerve block last month and did not work at all. I am scheduled for the other side this Thurs. Could someone explain to me how does this work or if this has helped anyone? I been trying my hardest to keep a positive attitude but it does not help when im in constant pain no matter what. I am still new to this and anything anyone can share please let me know..Thanks

Well allow me..Momlovetobake..... First of all..let me say I am so very sorry for you having to join us here in having to suffer with RSD... It is a very painful condition that just robs us of our "easy" life... life does become a challenge and trully does complicate things...As far as the nerve blocks..it essentialy does that..by the Dr. injecting anestic..it is menat to interrupt the signal from the nerve to your brain ..the flow of pain in order to give you a break.. I had 4 out of five every other week for several months, mine did not work either..there are many interventions being offered out there..The key is to keep moving forward and do NOT give up... Keep moving as RSD will freeze you up and be open and ready to try new pain intervention methods when offered... Many of us here have had RSD for many many years... many here take much medicine to help elevate their pain ( I can not take anything)... others are at the point of going for Ketamine treatments (I am scheduled for 3/2010)... At any rate..Most importantly is do not use ice... work closely with a very knowledgeable good RSD Dr. and stay close to us here on this forum as we are a close knit group who care a great deal about our family here... A wonderful weath of knowledge and our life lines!! Welcome again,

Hugz, KS:hug:

Welcome, momlovetobake.

I have not had many blocks as part of my treatment, so I will not speak to that, but I am sure others (like KS) will.

We are a group of lay people suffering from the same situation here. We can offer our experiences and opinions, lend moral support, lend an ear, allow you to vent, and even toss around some humor now and then.

We will, from time-to-time, remind each other that (with a few exceptions) we are not medical professionals, so our statements should be taken accordingly. What works well for one person may not work for the next. But a lively discussion will usually bring out good ideas and generate some interesting thoughts.

You should always check with your own doctor directly before trying any treatment. Even "home remedies" and over-the-counter medications can do harm in some circumstances.

Most of all enjoy the friendship that is offered. This is a good bunch of folk and we are all in this boat together.

Good to meet you,

Mike

Hello, and welcome, Moml2bake..
I've had rsd, and other injuries since 83.
It is a bear to deal with, I must say, as I'm getting older now, (53),So I know that when it's called a "Use it or Lose it" kind of disease, that's a FACT!
You've got to keep moving. Or, the your muscles will atrophy, and be gone. Gotto move through the pain. Not 'strengthening' exercise, but keep moving.

Do you have a good DR, who really knows RSD? Do you feel confident with your doctor?

I've had blocks, ordered by Dr S (Schwartzman), and they were only for diagnostic use.
If it doesn't work for you, then you probably need to move on to something else.

I take methadone, cymbalta, diazepam, migraine meds, and zanaflex.
I also use lidocaine patches.

There is a world of "remedies" that will help you deal with the pain, but remember, nobody can make it "go away" 100%, and that should not be your goal. Make life tolerable, so you can live it, and you'll do well.
I've heard many people say they're FAR more satisfied with a pump than the SCS. You should discuss that with your doctor...

RSD does spread. For me, the first several years, I had it between my shoulders, and up to my neck, and down my arm, then, it moved to the other arm.
Then, it went full body.
This is where "Using" it comes in, and can cause the spread to slow down.
Migraines are a big problem for me, along with sleep issues.

It's like having a new 'partner' in life. You've got to make deals with it, so if you have an appointment (which make me so dam paranoid), you might hafto change your schedule, or meds or rest, to be sure you can be at your best.

Give us your questions, and we'll all chip in and help you out the best we can~!


Pete

asb

I have RSD in my right leg.. from my lower back all the way through my toes. My middle toe on my foot curls under my foot when walking, but thats the only "disforming" thing i have if you would consider it that. I get swelling in my right leg in random areas, especially around the butt cheek (right butt cheek droops alot lower then the left).

I have lumbar sympathetic blocks, and they help me tremendously. Its like a new me. They KILL my back.. but my leg pain going away, and for long periods of time, with flare ups, but not as bad as without the block.

Doens't it block the nerve signals to the brain that tell ur brain you are in pain.. so u don't feel it as much?? I believe that is how it works.. good luck!

Thank you all for the warm welcome. Thanks for explaining the nerve blocks and what you all been going through. You guys are much more worse than I am and here I am whinning. I have never in my life heard of this. I just found this out from my attorney. yes I am on WC and its nothing but frustration because I have to do all the test they request me too. Along the process i have to wait and wati for approvals which makes it worse for me. I believe they just want to dope me up and just call it a day. I refuse to be doped up. It never worked for me anyway so I just sit here in pay see the dr just to hear the same thing again..you have to give it time be positive. I can't work more less do anything active but walking. That is all I do. I can't do anything to myupper extremities. I don't have the discoloration but i believe i have swelling in my arms and hands...When i get it in my thighs im stuck in bed until i can move again. Ijust found this site by accident and i am glad I did. I feel so outof place since my issue is not as bad as yours make me feel bad. it seems you all are managing it pretty well. I hope i can get there soon:) Thanks again:)

Dear Momlovetobake,

I am also WC. Do you have a really good WC attorney to help you? WC can be a nightmare - make sure your attorney is the best one you can find.

Have you tried to get the very best RSD doctor possible? If you are denied benefits under your WC insurance carrier than you can use your personal insurance coverage to pay for appt. and treatments. Try to find the VERY BEST DOC you can. If you are near a big city find a large teaching hospital pain clinic. Better yet, go to the RSDSA.org website and send Jim Broatch an e-mail asking him for the name of the ketamine providers for RSD in the US, and call the ones nearest you for an appt. These doctors know RSD extremely well and can help diagnose and treat you, with or without ketamine.

I learned the hard way - was injured in Nov 2006 and hope to start ketamine in March or April of this year. Its been a really long, tough, painful road for me and my family, and it's not over yet. I want to get better and go back to work, and I won't give up until I've tried everything. There are many just like me on this board who have helped me along the way..(thanks guys!!..)

Don't wait for your WC people to help you because they won't. You have to help yourself.

The very best of luck to you, and feel free to ask me any questions you might have....

XOXOX Sandy

Hi momlovetobake! I am 28 and have had RSD for almost 2 years. I had the blocks done but they did not work for me either. My doc tried a inpatient epidural drip which worked while in was flowing but after going home it might have been a week before it was back with a vengence. I now have the spinal cord stim. For me it works great but the battery is very sore and sensitive. I dont know much about the pump. Good luck to you on this journey! I wish you the best!

Hi welcome to the boards though I am sorry you are facing this. The block for me made my pain increase. So right now I am back to meds like neurontin and trying to keep mobil and decide my next step. Are you on any oral meds? I am sorry you have to wait for approvals. I can't even imagine how stressful that is. Does the doc who did the block deal a lot with rsd? I hope and if not I encourage you to try to get in to see someone who does. It is very key in my eyes. Feel better and hang in there.

Hi Sandy, My attorney is slow but gets things done. He is the only one around here that handles comp. It's a never ending battle...I don't have an medical coverage because i no longer work because of RSD. I will check out the website and thanks for the advice.

Abrown you see thats what scares me about the stimulators. They won't even resort to that they just want to give me the blocks. I guess a series of six blocks.

Daniella I noticed my pain increased even more once i got the block on my right side. I am on no oral meds because it don't work for me. Yep gotta wait for the approvals. Thanks for your input...I go in for my block tomorrow really not looking forward to it.