I was wondering if there were any Aussies on the board that knew of a good pain specialist in WA, I am very unhappy with the one I see and am struggling to find a new one. Any advice would be good

The other day, you correctly noted that a list of the physicians holding board certification by the American Board of Pain Medicine wouldn't do you much good.

So how about, instead, those physicians certified by The Faculty of Pain Medicine, a faculty of the Australian and New Zealand College of Anaesthetists? And better yet, a list of those 26 physicians in Western Australia who are so certified?

Unfortunately, the website doesn't provide addresses and telephone numbers, but this should give you a running start.

take care,
Mike

Hi Michael
Thank you so much for the information, I will do some research into the DR's listed. Two of them are my specialists already. Hopefully I can find one which is a bit more supportive. I'm sure one of them does not believe me when I tell him my symptoms and that it is spreading. But I don't think I am the only person on the forum that has that problem. Again thank you for the time and effort you put it. I will report back if I have any luck

I can not for the life of me figure out why many doctors still think RSD does not spread? It really is not a matter of opinion, its fact. If a doctor can not see that they should retire from all forms of medicine.

Jim -

You can’t seriously expect that doctors are required to READ anything, can you? Although to be fair, Australia may have a billing code that compensates physicians for going to the books in the case of a particular patient, in which case a physician would likely be able (but not guaranteed) to find the following:

Patterns of spread in complex regional pain syndrome, type I (reflex sympathetic dystrophy), Maleki J, LeBel AA, Bennett GJ, Schwartzman RJ, Pain 2000 Dec 1;88(3):259-66; and/or

Spreading of complex regional pain syndrome: not a random process, van Rijn MA, Marinus J, Putter H, Bosselaar SR, Moseley GL, van Hilten JJ, J Neural Transm. 2011 Sep;118(9):1301-9. Epub 2011 Feb 18.

As opposed to the U.S. of course, where, a couple of years ago and contrary to the explicit assurances a neuro-psychologist made to me when I first spoke to her concerning a then-proposed six-week battery of tests, and weeks after I was required to fork over $1,500.00 to cover the amount of her fees my insurance was not expected cover, she pointedly refused to read any of the articles on the neuro-cognitive effects of CRPS I had emailed her well prior to her engagement, “because there’s no billing code to cover research.” Atta-girl!!! Hard headed and plain speaking, she - no doubt still - represents the values of this great land at its best!

(I marvel that anywhere in the rest of the world there are those who would even presume to meet our standards of excellence.)

Mike

Michael
Brilliant links again, It is frustrating when you are sat in a DR's office talking to them and you can just tell they don't believe you. I have the added problem of not always having outside symptoms, It can be a terrible day in terms of pain but I may not have any colour changes or swelling. This always happens on the days I have a dr appointment, it is almost as if the Dr can't see it so it can't be happening. On my next appointment I have decided to print out information on from the internet to take to my Dr and see if that helps.

If it is of any consolation, I went for close to three years without any outward signs except subtle changes in hair and nail growth that Dr. Schwartzman was able to use (specifically something called "pilo-erection" in a game-changing report he wrote on my behalf. He also remarked during an conference with my wife, as I was discharged following a 5-day lidocaine infusion that did nothing for me, on how "deep-down" my pain was. (What some people call "bone-crushing pain.)

Didn't look through all your posts, which might answer this, but don't know if you have lower-extremity CRPS. But even if you don't, here's a tip: the moment you get in the examination room, casually pop yourself on the examination table, slipping off your shoes and letting your feet dangle: in the "dependent position." If you have any tendency to edema, it should show up w/on minutes. And if your pain if "lower-extremity" your feet with turn all sorts of fun color in the minutes while you wait to be seen, with no increase of pain. (But it puts on a good show.)

Hi Micheal
Thanks again for the info, I think that the dr's I have seen expect to see the mass swelling and colour changes and if someone is sat there looking relitavly normal then their first thought be to rebuff the persons claims. my crps affects my right side so leg included, I will try that trick. I do have cracked split nails and permanent tremours but unfourtunatly I think sometimes the Dr don't really know theirselves. But thank you again for the advice

Hi, the idea is to sit there, looking "relatively normal" with the edema, mottling etc., setting in as the nurse takes your blood pressure, and the doctor begins to ask her/his question. Then you just ever so casually mention whatever you've just induced as "something I've been noticing a lot lately . . ." And most likely, no one would even pay attention as to how you were sitting, and even if they did, the larger point is that in a person with normal sympathetic function, the blood vessels in your legs, feet and ankles would naturally construct in order to compensate for the slightly unusual posture: mo color changes or edema would follow. So it's nothing you're faking, only allowing.

And where your primary care physician is at least interested - which is great - in looking at this in greater detail, I will try to pull some information for you on changes in nail growth and body hair.

In the meantime, I have two recommendations: (1) get a professional photographer to take pictures of your nails ASAP (someone who will also sign a letter attesting to the date of the pictures and that s/he either personally knows you or reviewed of copy of your driver's license passport, with its number and expiration date) and (2) STOP SHAVING YOUR BODY HAIR, if you do. And while I understand that the latter may be distasteful to some women (and younger women at that) it's essential if your docs are to be able to judge abnormal patterns of body hair, which for right now at least, may be one of the few things might have to go on!

Hope this is helpful.

Mike

thanks for the information and the offer to look into the nails and hair growth it is much appreciated. Both you suggestions were great ideas i had not thought of taking pictures of my nails i have a friend who is a nail technician and i am sure she would help me out. in terms of shaving my body hair i use hair removal cream on my left side i can't use a razor due to the tremors but on my right side i very rarely have to use anything to remove the hair as it grows very slowly but i will leave my left side so the Dr can compare it to the right side. I spoke to my husband about your suggestion of photos he said why not take them daily for month and also when the swelling and colour changes are at their worst and take them to the Dr so even if on the day of the appointment my limbs look ok i can show the pictures and hopefully they will take notice. So thank you again for the wonderful advice