new article in neurology now re crps
 

go to neurologynow.com
then click on current issue
then go down to heading, Feature and click pdf for the article titled 'More Than A Feeling'

I read the article. Here's the direct link: http://www.neurologynow.com/pt/re/ne...d=1&nav=search

It's certainly the most controversial piece I've seen in years. Under the heading of a multi-modality approach, involving lots of PT etc. [I did that with a three month outpatient regime at a local hospital in 2003, although I'm sure not according to Dr. Oaklander's guidelines] one of the leading CRPS specialist in the country is now, according to this article, saying that blocks are useless. Moreover, she is employing a technique of casting [read: immobilization] to guide frozen limbs back to their original position, when everything I've learned along the way suggests that immobilization exacerbates RSD. (On another personal note, my problems really took off when my feet were cast following tendon injuries, and were compounded during the period of time I was wearing ankle foot orthotics.)

That said, Dr. Oaklander clearly knows her stuff, and the young lady in the article is obviously greatly improved. (I take issue with her one point however, that all of the changes in the brain are secondary to pain. That is an unproven assumption on her part; nothing in the literature that I am aware of has proven Dr. Oaklander's point. Moreover, PET scans have shown the immediate - within seconds- reversal of regional cerebral blood flow (rCBS) in patients who were undergoing ECT therapy, while unconscious, which can hardly be deemed a response to the deminishment of pain.)

So this is all very confusing. Any thoughts?

PS See related discussion under the thread: what good are blocks if relief is temporary http://neurotalk.psychcentral.com/th...read87191.html

The pain is real...OBJECTIVELY.
 

When I was diagnosed with RSD/CRPS I, the 2nd ortho doc explained to me that my pain receptors had reversed, and these pain receptors are in a hyper state, all to do with my brain; it is in my head. Doc stated," Objectively, I am healed."

I replied," Objectively, I was able to walk, be an active woman, work,play, be touched,etc., before the injuries/2 surgeries to my right knee. I was also able to walk without a cane, and did not need a handicapped placard for my car, so I wouldn't HAVE to walk so far. Objectively, before the injuries and 2 surgeries to my right knee, I was not in this horrid, burning pain 24/7, diagnosed with major depressive disorder due to a general medical condition
(psychologist, seen every 2 weeks), having panic attacks, insomnia, taking many medications, and my body parts swollen as physical therapy made me worse, not better. Objectively, I went from an active person to a sedentary person, proven by an FCE (functional capacity exam),performed by an IME(independent medical examiner), requested by WC and this doc. All of this that I have stated indicates, OBJECTIVELY, I am not healed..I am worse.

I ask the doc if this was all in my brain/head, why do I feel pain in my body?

I pointed out that my pain is in my right knee and leg..reaching into my hips, and spine. This was before the pain had mirrored to the other knee and leg, and both of my hands.

The doc replied that he is referring me to a pain management doc, and released me MMI(maximum medically improved), with a 2% disability to my right knee!:eek:
3 months passed, and I finally see the PM doc., hoping I would have pain relief addressed. It turned out to be another IME for WC. That PM doc told me that I have RSD. WC did not like that diagnosis, and sent me to another PM doc(3 months later, still no pain relief). The 2nd PM doc, agreed with the 1st PM doc. Again, I was told that my appt. was a IME for WC., and that 2nd PM doc wanted to see me again ASAP, to address my pain issues and RSD/CRPS I.

2 months passed, and finally WC agreed to let 2nd PM doc be my treating doctor. My PM doc told me that too much time had elapsed for my condition to be reversed, that I would never be the active woman I once was, and all he could do was help me feel more comfortable (pain relief). PM doc told me blocks would not help me, and he was concerned it would actually make the RSD spread.

Currently, a court battle is approaching, this coming Tuesday(5/19/09). My atty., my 2nd PM doc,and me, vs WC., to continue treatment and collect monies owed me via TTD since 1/5/09. I was approved for SSDI as of 01/05/2009, 10 weeks from the day I applied, 01/23/09( first time). Objectively, I am healed; Objectively, I am on SSDI. What could be more confusing???

Is blood flow the only indication that pain exists? I don't understand the term "objectively", anymore:confused:

Thanks for posting this.

I read the article a few days ago as it was sent out through the RSDSA newsletter (if you go to the RSDSA site, you can sign up for a newsletter where they send you all of the latest info on RSD and other similar disorders) and thought it was really interesting.

I'm glad that they are now admitting that RSD is a neurological illness and that they are trying to get more Neurologists to treat it. Hopefully that way, the Neuros will have more ideas as to what might help and try and find a cure for it rather than just give us all lots of pain meds.

I was especially interested in the topic about casting an RSD limb. I have severe Dystonia in my left leg (the one with RSD) that doesn't respond to any therapy and my PT's have now made a removable splint for it that is made out of plastic. It is supposed to bring my leg back into a normal position instead of being rotated out to the side but it doesn't seem to be helping that much right now.

I will have to talk to my PT's with my mum and ask if it is possible to use another removable splint to work alongside the other to see if that would work any. It's interesting that they are saying that more than one splint is often useful. I have only ever used one splint and I had my leg casted before I was diagnosed and it made my RSD a lot worse.

Thanks again for posting this - it is very interesting and i'm sure it will help many others!!

Hi Dew,

I'm sorry that you had to deal with all of that rubbish!!!:hug:

I went through a similar thing when I was diagnosed. My Doctor didn't explain RSD very well at first and used terms that as a child, I didn't understand.

After a few months though, my dr started realising that I didn't understand what he was saying and started using different terms to try and help.

He explained to me that the pain ISN'T in my head and that it IS very real but that it is the brain that controls it all which is why some doctors say it is in your head.

I think that doctors sometimes don't mean to cause any harm by how they describe things but to us and others, it makes us feel as though we are making things up.

When my dr explained that it WAS real, I felt as though a huge weight had been lifted off my shoulders. It was so nice to have someone that believed what I was going through and knew my pain was real.

It's pathetic how doctors describe things to us sometimes. They really need to come up with a better term to describe RSD rather than saying it is in our heads!! I know that the pain is in our heads but that doesn't mean that it isn't real ... it is only in our head because it is our brain that controls all of the problems lol !!!

I hope you start feeling better soon and you are in my thoughts and prayers!:hug: It's so sad that so many of us with RSD have to deal with that!

Is this the same article that I emailed around a few weeks ago?

DEW,
(and Allison), Sometimes, and more often when dealing with Ins. companies,
to figure out how the person is "couching" their "Objective" terms and why, simply ask yourself,
which side of their bread is being buttered?
Or, Who's paying them?

NEVER let an Ins. Co Doctor make you feel guilty!

Pete
asb

i think so . i read this in the neuros office after pete sent the article out. it was a good article as i still have the mag. but i think that some things might be a little sugared coated. they never do an article where someone is struggling .. with treatment or just the RSD its self. i think that there needs to be a reality to some of these article

carrie

I am just not sure about this article. CRPS is already formally classified as a neurological disorder in many countries including the USA. Unfortunately, neurology is a branch of medicine typified by conditions that are poorly understood at best and almost all are incurable!

There seem to be lots of these sorts of articles on CRPS at the moment - summarising what we already know but not really adding anything much that is new to the party.

It is eternally tedious and it is poor quality science when a single case study is held up as some sort of justification for a wider, proposed treatment protocol or a model to be followed for everyone.

I am sure that this girl has had a positive outcome and that is great but you only have to look around at this board and others to see that there are vast numbers of people who have tried every potential treatment listed in the article (and more) with apparently little or no effect on the progression or severity of the disease. I was diagnosed relatively early and treated fairly agressively. I have tried extrememly hard at everything I was asked to do and have manitained a calm and positive attitude to help myself but I have still ended up with severe (and progressing) movement disorder symptoms that have put me in a wheelchair and none of the therapies suggested here or elsewhere have made any difference.

We all know from the research that has been done that the girl in the case study is in an age group that has a high likelyhood of obtaining full or substantial remission from CRPS symptoms anyway.

It is great to have stories of remission and improvement to give hope. However, this article and, in my view, others from some of the particular physicians involved with RSDSA seem to keep describing the same simplistic approach over and over again which involves trying a series of these multi-modal treatments and then bingo - a bit of effort and a few months on and people are in remission or vastly better. I am pleased for the people for whom this works (I assume there must be some) but the statistics produced by the big clinical studies on the long term symptoms and disability levels that CRPS sufferers have simply don't add up with the "cheery" articles like this one which promote these simplistic multi-modal treatment protocols as highly sucessful.

Anyway, if Dr Prager's comment is correct that "six or more hours a day of intensive physical and occupational therapy" is the essence of successful treatment then most of us have no chance since that level of treatment is not on offer to most!! I was told that my CRPS movement disorder symptoms were such that I wouldn't be able to participate in such intensive therapy therefore I can't benefit from it!!

Hi,
 

This is another one of those fairy tale stories that everybody wants to hear. Everything comes out good,but they don't understand it's only for one person ,not all with RSD.

I said this about books awhile back, people want a happy ending but that's just one person's story.

RSD don't give us a fairytale 99.9% of the time.

I consider myself in remission from pain but I have other symptoms, such as swelling, discoloration, can't deal with the weather change.

This is my thought on this.

Ada

My conclusion also. My wife's early treatment was pt and no pain control whatsoever. She became worse and she was losing her mind from all the pain after 3 or 4 years. So, reading this article just made my eyes roll again, damn it. :)