I learned more from your posts on this topic than I have from the two docs that I asked! Thanks for the insight and personal experiences about meds, no meds, pain and spread.

It seems most everyone thinks that the spread is not dependent on the quantity of meds..apparently, the spread is goin' to happen if it wants to...Of course any long term pain can wear you down...unless you can truly master mind over physical matter. (In fact, I am curious to read about the yogis who are able to walk over burning coals and can endure physical feats that involve incredible pain..there are those who can lower their heartbeat to practically nil..)

The info everyone shared gives me some confidence in weaning (makes me sound like a puppy ) from the Neurontin. Long term pain will wear you down, but it seems the spread will happen willy nilly if it wants to, with or without....

I am feeling a lot of extra burning tonight but I'm going to hang in there and see what happens..I want to be free of Neurontin when I start the topomax..
In the meantime, I'll pretend I work in the circus and eat fire...
much love to you xoxox
Hope4thebest

Hope4thebest, Good topic. Originally my pm Dr. told me if the pain is not controlled my RSD will spread, but my RSD spread. During a flare there is no way- I need to be on pain meds and other meds. I agree with Bernclay2. When I stopped using my original site of RSD(nerve injury), my RSD had calmed down and I have been able to come way down on meds. When I think back every time I had a flare it was after PT had me try too much with that arm. I also found when I am on high doses of meds I push myself too far and then I would cause more spreading. I find it is important to be on least amount of meds that I can tolerate and that way i won't over do something. One pm Dr. told me "no PT except hot water therapy and nothing repetitive. This advice has helped calm down my flare. Meditation & relaxation techniques also help control my fear & anxiety of the pain. So i guess if i met someone that was just diagnosed i would suggest least amount of meds that can tolerate, avoid using primary site of RSD(but try to keep gentle motion of area), hot water therapy, relaxation/meditation, and support group like this. momof4

Hi momof4
I was doing warm water therapy and the insurance stopped authorizing it (even though four docs have written in there reports how necessary it is.)

I waited around for approval and it never happened so I have resumed it and am paying out of pocket for it and taking only a half hour lunch and working a half hour later to make up for my warm water P.T. time....(I'm hangin' on by a thread with this pace...)
In trying to get the edema down in my lower limb so they can complete the EMG test and also do a Bier block in my lower leg/foot but no veins are visible..

I have been over zealous with the movements and I've created a huge flare...
I I agree with your doc...gentle movements in warm water is the way to go...but I've been trying to flex my ankle repetatively and it is causing mega pain...
One of my docs said the edema is there no matter what I do because it's what RSD does...
But I'll keep trying.

I'm glad your pain level has been reduced by minimizing movement with your RSD site..I guess we have to find the right balance of movement..

Has anyone taken diuretics to get the edema out of lower limbs and did it work?

Hugs from hope4thebest xox

I'm so sorry for your situation Hope - can your attorney help in some way? It just seems so WRONG....I am also being denied everything by WC, and need to use my personal insurance and make the co-pays, etc. It's maddening. And not right.

Keep fighting....and I will keep you in my prayers. You are awesome.

Much love and peace, Sandy

Hi Sandy!
It's so good to see your post, because it makes me think that you are doing OK with your boosters, the traveling back and forth, etc! How are you, dear friend?

Have you gotten additional relief from the booster you have receive thus far?
What a roller coaster you have been on..I pray that the ride brings you to a place of less pain or no pain at all!!!

I'll talk to my attorney tomorrow about the warm water therapy..in the meantime I'm glad I've taken the initiative to do it on my own....it's the best form of therapy IMHO..it feel so good when I'm in that 93 degree water and able to move in ways that I can't out of the water...I know it's raisin' that seratonin level!!
I wish everyone could have the experience and access to a warm water pool.

Hugs from Hope4thebest xoxox

I actually don't take any meds for my RSD. I didn't like the way lyrica made me feel and it made me sleep all the time. So I stopped taking them. I have managed to control my pain mental for the most part but there are those days that it really gets out of control. I am working again at a very easy job and I think that really keeps my mind busy so I dont think about it so much but there are times I stop. Like yesterday it all of a sudden felt like somebody stabbed my arm and tried to separate the bones, it hasn't let up much today but have been working thru it.

Dear Hope,

Thanks so much for asking. I used to love the warm water pool, but had such problems with my ears I had to stop going...I couldn't tolerate the noise level in the pool area, even with my ear plugs!

As of last weekend I am up to a total of 14 ketamine infusions. I have weaned off of all of my opiods (with the help of Suboxone, finally!) and feel the best that I have felt since I hurt myself in Nov of 2006. I truly feel almost 100% better! And it's raining out!

I had an IME today with a doc that is supposed to be on our side for WC. He is a PM doc from RI that I have never met. He knew NOTHING about ketamine prior to meeting me. His opionion is going to be used by the WC judge when she decides whether or not to order the insurance company to pay for my ketamine treatments.

He was amazed at how good I felt and how well my affected areas looked. My right arm is skinny and weak, but there is no discoloration or rash. This doctor thinks that the only way to go for RSD is the SCS!! (Think there's a "rebate" involved there or what??) And he readily admitted that if I had seen him prior to my infusions he would have rejected the request for authorization for the ketamine. But the success that I have had with the ketamine had him astounded - he has never seen any of his patients (he claims to have treated about 100 RSDers in his career) go into remission. He poked and prodded me everywhere and my only remaining painful spot continues to be my right occipital area which perhaps may always be problematic for me. I told him that I felt I was 95% better off than before I started the infusions.

I likely won't find out the results of this meeting until June when the reports are issued to the judge in court. In the meantime, some of the doctor's bills have been submitted to United Healthcare, and there have been a number of adjustments, denials, etc. Even though Getson's office insisted that I pay CASH for his services, and then submit the bills myself to insurance for reimbursement, that is not what happened. His staff has been dealing with UHC and I haven't seen a bill yet - and I've been receiving infusions since April 19th. What a total mess the billing is going to be if/when WC gets involved...

I sincerely hope that this doctor is honest and writes up what we discussed today. He said that in the end he supported the authorization for me to receive ketamine infusions at the expense of WC. Especially since it is my intent to return to work next month. His concern seemed to be how long and for how many units the approval should be granted. And whether the ketamine would continue to work forever...which I worry about, too, of course.

So in the end, it turns out that I did the right thing by obtaining the ketamine with my private insurance and parents' guarantee, because the guy in RI who was hand picked by my lawyer to do the IME on my behalf would have denied it unless he had seen for himself how well I did with it! ONLY IN RI!! (That is why my PM doc is in Boston...)

Please take care and don't ever give up on trying to get what you need and deserve for treatment! YOU ARE WORTH IT!!!

XOXOXO Sandy

Dear Sandy....

I am so incredibly happy for your super results..You deserve the best forever..feeling 110%..What a story..Thank goodness you had had the infusions already to prove to these boewinkles that remission or at least relief of pain is possible... Life should never be this hard but if it has to..Thank god you are a positive remarkable sucess story....bless you, my friend!!!!! I hope and pray you will have this relief forever..so what about those dumb billing rat races...let them figure it out... you got the juice!!

Love, Kathy

Sandy!
The saga is unending, is it not!!!
Imagine a IME examiner who has treated 100 RSD'ers and was not familiar with Ketamine...thank goodness he finally saw the light !!!...that is a major red flag to interview the docs that we at least can choose to see!!


The QME exam I had last month lasted about 30 minutes...we spoke for about 25 minutes, then we were ready for the 'exam'
He removed my sock and looked at my foot..then he held it in his hands for about a minute...That was it!!! no range of motion, reflexes, etc, etc. no making note of excessive edema, nada, etc, etc. he didn't look or examine the rest of my left leg nor my right leg and foot !! (I was wearing long pants that he never rolled up) I wonder, I just wonder what his report can possibly consist of!! I even wonder if he will be the one who writes it...

The previous QME exam I had was full of facts and exam results with recommendations that were in my favor, including aqua therapy..I was able to read a copy of it...but the wc insurance wanted yet another exam...very scary and unjust stuff....

Sandy, Kathy said it all...you have the treatments..you're feeling soo much better..that is all that really matters...the rest will fall into place..
I am elated for you at how better you're feeling!!

AS I come off the neurontin, I feel mentally stronger!!! I hope I can maintain my 'behavior' tomorrow at the wc insurance company's deposition...I'll try and behave if she pushes my buttons..

love from Hope4thebest

Dear Hope..

Good luck today with your hearing..You are very strong and have your facts..Place your words in proper context and with pose and class, which you have eliqently do already..Let them sound like the idiots..Take care of you and plz. let us know how you do....
hugz and I will say a prayer for you...stay calm..

Kathy