Hi All..

New to the board.. for anyone that wants my story, my intro is on the RSD intro page. I have been in PT for my last knee injury (crush injury) since about November. I have thought this man to seem quite knowledgeable. He is sports focused and does rehab for state teams. He has spent a lot of time with me rather than leaving me unattended (which we can all do at home) like my last PT did. It was all going good until I first told him about my tentative CRPS diagnosis from my surgeon. That is how things started for me, after all.. it was " I believe you may be developing CRPS" and almost no information about it".. then waiting for diagnostics, then referral.
Perhaps because it was a maybe, his response was to equate it with fibromyalgia, and to say that it was one of those big blanket statement diseases that a doctor pins on when they don't have a diagnosis! By the way, I'm not going to argue about fibromyalgia, it may be very real and quite painful.. but no one who knows both diseases would think that the two are comparable.

As I moved forward in stages of treatment, he has been much more respectful, however it does seem clear to me that he just doesn't know anything about the disease and I'm not sure that he wants to or feels that he needs to.

Next, as I've been discussing in the intro thread, I'm sadly just realizing how dangerous my addiction to cold therapy has been. That has been encouraged of course, by every PT I've had including this one, and all of my doctors. (Cringe).

To top it off, they got sloppy in their billing this month, and billed me again for three dates that I've already paid for. I've explained this to them and can prove this via printed check etc. I ask them for a copy of the first invoice that they sent me (reflecting what dates I was asked to pay) and they "can't do that".. for some reason. Billing Dept was insanely rude to me.. to the point where I cancelled my next appointment until this is resolved.

Not good. Sorry for venting.. but these are a few strikes. I just don't know.

Hey there! Sorry for all that you are going through. I would fire the PT in a heartbeat. If you do indeed have CRPS and are going through physical therapy, then that therapist needs to be knowledgeable otherwise they can do more harm than good. PT's definitely like to use cold therapy/ice, but if they knew what RSD/CRPS was they would never recommend it as it is dangerous for this condition!!

I hate when offices send bills, demand you owe and then they can't back it up...that is pure BS. If they can produce a bill, then they can pull up your account history, just don't give up...be persistent with them.

Wishing you the best of luck!
Nanc

Being an excellent PT for non RSD patients does NOT equate to being an excellent PT for you. You likely need a new PT and doc/s.

Stop the ice asap. The fact that ice went from unpleasant to tortuous, was one of my first signs that something was very wrong. I allowed it to continue for months--stupidly. Now, I'll never know how much additional nerve damage was caused.

I agree with the others...fire them and move on. It's hard...especially when you like the therapist...but the wrong kind of physical therapy can do much more harm than good in the long run. Doctors had be icing for a long time and I think it contributed to the progression of my RSD to the point where blocks didn't help at the 6 month mark (pure speculation on my part but everything progressed so fast that I really think the icing and immobilization were big factors in that).

I'm not necessarily saying that your physical therapist has to be an expert in RSD...that would be preferable but is not necessarily the only option. At the very least, your physical therapist should know OF RSD and be willing to learn more about both the condition and YOUR specific case (as we are all different). You need to be dedicated but you need a therapist who will tailor the physical therapy to you as an individual so you can get the most out of it.

Good luck and take care.

Well said, Catra !

I wouldn't hold it against the PT that they used/recommended ice/cold therapy for your initial dx, but once the dx of RSD was introduced, any PT who didn't already know about RSD and appropriate interventions is obligated to do some research on what interventions are advisable and which are contraindicated. They should have immediately stopped the ice treatment and conferredith the prescribing doc at that point.

Your expression of being "addicted to ice" caught my eye. When a bullheaded physiatrist was misdiagnosing and mistreating my TOS, insisting that I just had to do more weight lifting to fix my severe pain, ice for 16 hours a day felt like the one thing that was saving my life and numbing the pain. Now I realize it probably caused or at least contributed to the pain from TOS developing into RSD. As soon as I started reading up on RSD, I realized it was a "no-no" but at the time I had NO other effective treatment to help manage the pain.

I'm embarrassed to admit it here, because I understand refractory pain, but on occassion now I still depend on ice packs when I get really deserate. Thankfully, most days now I do have a reasonable level of control of the pain thanks to the right medication combo and other interventions.

Finz

There is a great deal of misunderstanding and misinformation out there about the effect of ice. There seems to be lots of urban myth about what it does and doesn't do, especially in relation to CRPS. I'm incredibly hesitant to mention this because I appreciate that people have very strong views but I if I were you, I wouldn't worry at all about your periodic use of ice packs.

You believe this is incorrect? Although the website is dated, I have found that Hooshmand is spot on in many of his explanations.
http://www.rsdrx.com/rsdpuz4.0/puz_102.htm

I don't share your view about much of that particular website content I'm afraid.

I honestly don't want to offend anyone which is why I've never mentioned it before. There are some articles on the site written by other authors which may be more recent, more accurate and of better quality. The majority of it is nothing more than that particular doctor's personal opinion and unsubstantiated hypothesis. It contains virtually no references to any published studies, peer reviewed research, recognised authorities or texts to back up, justify or evidence any of the opinions and hypotheses. Too much of it is based in pseudo-science and some of it just makes no sense. It has to be treated with great caution.

The specific part you referred me to (which I have looked at in the past when researching this urban myth previously) is really worrying and seems to be where the urban myth has sprung from. It contains some bizarre statements and, again, there is no evidence at all to back up his claims.

I'm sorry. I don't want to offend people because most people who post here seem to like that website and think it has good advice and I don't want to stir things up but I can't agree and it is certainly not a source that any of the leading CRPS clinicians and researchers I've spoken to would ever look to.

Neurochic, thank you for your honesty about the website you just referred to. I have often referred others to it and even considered going there a long long time ago, then though I 'questioned' some of Dr. H's viewpoints in some areas.
I think that is why I never did go before he retired. loretta

Neurochic - as loretta said, thank you for your honesty. I have to agree with you on that website. I have never used that website as a resource for me as I do not agree with most. I have had RSD/CRPS for 22 years now and have ALWAYS heard the same thing about ice - don't do it! I have heard this from many, many resources be it online or in person. And from personal experience, it has done more harm than good with me.

I would say that this is one is not an urban myth, I would say that it is a proven fact. Even the RSDSA site advises against using ice.

Just my opinion...Nanc