I appreciate your words of encouragement, and each of you have helped me. I still can't stop the tears from flowing. Yes, I am over sensitive;however, to think that THIS is the BEST anyone can do for me is unacceptable. I was dx 15 months out from initial injury. Too late for blocks, or anything!

The IME's nurse said that I should be glad it happened now, not 7 years ago, when RSD/CRPS was not really considered a proper dx. I replied, the outcome is the same,isn't it? I have no active life, I am homebound, and I still deal with doctors that just aren't informed. This didn't have to BE this way...


love you,
Dew

Hang in there Dew, things will calm down in time, you'll see. Your family will look after you and you'll be up and about. You're going through that stage where its dark and unknown but you'll soon see yourself take control not it controlling you.

jim

Linda,
I strongly agree with Sandra.
These reports are very difficult to hear, or read, but I too think that doctor was really on your side!
I remember reading Dr. Schwartzman's testimony for me (transcript of his videotaped deposition). I too, was in tears. (It was "otherworldly", I couldn't believe I was reading about myself!)
But, without it, I wouldn't have been awarded what I was.
And, I'm fairly certain, that I, Dr S. and my Attorney, were a "team" that really upset the insurance industry, and put RSD on their "Radar".

(I don't know if you recall the story of me actually meeting, the adjuster who had to write my check, at a tiki bar in the Keys), he told me that the entire industry is freaked out by this disease, and my award! As well they should be.

They know they can't win, but still, they use dirty tactics.
This doctor really covered you.
Let God do the rest.

I wish you the best, and pray for your comfort..

Pete

so sorry ur heart hurts so badly. how well i'm learning how little people know about RSD! even some of the quacks that W.C. sends me to - do they ever read current medical info? i don't have full body, so i really send u good thoughts & i have u in my prayers. this has been a cryin' day 4 me. take care of urself...... thinkin' of ya.

I am so sorry that it didn't go well at all and that more can't be done for you as far as treatment goes. Please hang in there and don't give up despite this terrible ordeal.

Dear Dew -

The one thing I have to focus on is when you said:

I was dx 15 months out from initial injury. Too late for blocks, or anything!

I'm pleased to report that there are still good treatment options available. Check out for one, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Pain 2009, in press, free full text at http://www.rsds.org/2/library/articl...n_Pain2009.pdf :

a b s t r a c t
Complex regional pain syndrome (CRPS) is a severe chronic pain condition that most often develops following trauma. The pathophysiology of CRPS is not known but both clinical and experimental evidence demonstrate the important of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist that has a well established role in the treatment of acute and chronic pain. This randomized double-blind placebo controlled trial was designed to evaluate the effectiveness of intravenous ketamine in the treatment of CRPS. Before treatment, after informed consent was obtained, each subject was randomized into a ketamine or a placebo infusion group. Study subjects were evaluated for at least 2 weeks prior to treatment and for 3 months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4 h (25 ml/h) daily for 10 days. The maximum ketamine infusion rate was 0.35 mg/kg/h, not to exceed 25 g/h over a 4 h period. Subjects in both the ketamine and placebo groups were administered clonidine and versed. This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p < 0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

2009 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

And while, in the study's conclusion, the authors note that among its limitations were the "nonstratification of patients either by length of time with the illness or by the temperature of the affected area," it bears noting that not only was the sole inclusion criteria, for any patient with a confirmed a diagnosis of CRPS "whose condition was intractable for a minimum of 6 months and had failed at least three of the following therapies; nerve blocks, opioid analgesics, non-opioid analgesics, non-steroidal anti-inflammatory drugs, anti-seizure medications, antidepressants, muscle relaxants or physical therapy[,']" but, in conjuntion with another point, they make the following observation:

There were no significant differences between those patients with a shorter duration of CRPS (11 patients with an average length of illness of 2.6 years and a range of 0.8–4.2 years) and longstanding patients (8 patients with an average length of illness of 12.2 years and a range of 6.8–20 years). [Para. 4.2]

In other words, not only did they make no effort whatsoever to cherry-pick their subjects based upon duration of disease, but looking at the spread of patients, someone with only 15 months of the disease looks like a newbie!

And as noted in the earlier thread on this piece, Ketamine, the article http://neurotalk.psychcentral.com/thread104838.html, it's just this kind of double blind placebo controlled study (or perhaps a larger one with NIH funding behind it, now that this one has crossed the threshold) that is going to make the WC insurance companies of the world finally pay for this treatment!

And even without ketamine, have you considered Methadone or Zometa? Methadone is surely covered by WC and has the unique advantage (in addition to being a powerful analgesic) of being an NDMA-receptor antagonist: which is to say that it goes to the heart of the beast. Just be sure to get something prescribed by your doctor to keep your GI system moving while you're on it.

And there are yet more things out there, for now considered experimental, including the very interesting work Michael Stanton-Hicks, MD is doing with "high dose" Prialt, to say nothing of my old favorite, before I found out that California law restricts its use only to certain defined psychiatric diagnoses: right unilateral electroconvulsive therapy.

Finally, just in terms of learning how to drop your resistance to the pain and accept it as just another sensation for the time being, I cannot begin to tell you what a life altering experience I had - about a year into my diagnosis - when a really good pain psychologist suggested that I take an MBSR class. (Mindfulness Based Stress Reduction.) The program has been run out of the Univ. of Mass. Med School for over 30 years (started by one Jon Kabot-Zin, PhD. - an interesting Google search). I've heard Jon speak at UCLA (a packed-hall) and it's clear that one of the origional and continuing central thrusts of the program has been assisting people in chronic pain. And it works! It's built around a 2 and 1/2 hour class that meet one day a week for eight weeks, with a strong emphasis on a daily practice of meditation and yoga (wonderful for proprioceptive skills) concluding with a day long retreat/program. For those of us who don't live near its Worcester MA base of operations, where teachers are trained and classes are freely provided to students, the cost is roughly $500, depending on the area. Here's the homepage, along with a search engine that let's anyone find one of its trained teachers in their area. (Full disclosure: my MBSR teacher 7 years ago is one of my best friends today.)
http://www.umassmed.edu/Content.aspx...d&itemid=41254

So hang in there and be of good cheer,
Mike

Dew--

I should have said this in my earlier message - Don't ever ever ever give up!! Mike is awesome, he always includes the very best info in his replies. Check out the options that Mike has listed! (BTW -There is a list of doctors that provide ketamine on FB on the Ketamine Klub page.) I contacted ketamine doctors from this list on my own for an appointment. I don't know whether WC is going to approve the treatments, my attorney is working on that right now; or whether ketamine will even work for me. But at least in the long run I will know that I tried it.

And I shouldn't have asked you earlier about PT - after a whole year of twice weekly appts I never advanced much with that modality. It is always recommended, and I feel guilty about NOT doing it, but it truly didn't get me very far. I did find a public pool that is only 10 minutes from my house that has a warm water therapy pool that is awesome - it is maintained by our City and I love it! I wish I had found it a long time ago! Check around to see if there is one available near you - you may find one at a local YMCA or city pool like I just did. It feels great on my legs and my (new) bad hip.

XOXOXO Sandy

((((DEW)))

It's like "wow, how can drs. be so uncaring?" You know almost all of us have been through so much that it takes everything we have to get by, but if we all read each other's story's we are strong somewhere inside. I just don't know what else to say, but we are all here for you.....gentle, gentle hugs and prayers from me

Cindi

I'm sorry this is such a tough spell for you right now Dew.

Please do what you can to stay on top of your pain levels. I know when mine is soaring, I'm not able to deal with stress, get very weepy, and take a pessimistic view. Times like right now, when it is controlled, I can see what I do have to liuve for and look forward to.

Dew,

Time is of the essence when treating RSD, that's true, 3 months to be able to maybe still beat it without it becoming for ever disabling or chronic, but that doesn't mean there aren't ANY treatment options at all for patients who have been diagnosed too late. That doesn't mean you don't deserve care! I was diagnosed and treated for the first time when I had RSD for 2 years and 7 months, or 31 months! The doctors tried EVERYTHING. They didn't just say, it's too late anyway: buhbye and now go rot in hell. I don't get the reluctance to treat you or to keep looking for good treatment options at all! It's as if they have written you off and that's a COMPLETE DISGRACE!!! You have to keep trying, doctors can't give up. I mean who here is happy or content being an RSD patient? No one! We are ALL on the lookout for better options!