Hi Kyzy,

Here is a reply I posted in a thread about insensitive people. It describes my history of dealing with PTs, which doesn’t appear to differ that much from what you’re going through:

…..I need to add that the most insensitive group of people I have ever had to deal with are physical therapists. Most of them, and nearly every one of the new ones, really believe that PT can fix everyone. When it doesn't fix you they become jerks and blame you.

This has been my experience with PTs for a very long 28 years; ever since a slip of the scalpel during a back surgery in 1978 made standing, walking, or even sitting upright painful. After my 1995 injury, those activities were just too painful to even try; and I certainly wasn’t going to hurt myself just to make a PT happy, or to convince him/her that I really do want to get better.

PT is wrong for most people with painful nerve injuries, and it is wrong for people with RSD. I agree that PT may very well be useful for people with chronic pain, but according to the International Association for the Study of Pain (IASP) (1995), chronic pain is pain that has no useful biological function and the mechanism of that pain is not understood. That aint us.

Our skin is most often purple, most of us have, or will face patchy osteoporosis and inhibited hair and nail growth, and almost every one of us have a severely painful hypersensitivity to cold, and a lower skin temperature. These are all objective signs of a real physical disorder. The experts can pretend cyanosis doesn’t exist, and they do, but we see it every day.

I have written in the past that all you need to do to cause RSD burning pain and allodynia is to put a blood pressure cuff on your arm and leave it inflated to above systolic for 30 minutes; your arm will turn purple, and if touch an ice cube to that arm and you will feel the same allodynia you feel every day with this disease.

We don’t have chronic pain, we have pain that won’t stop hurting because the “experts” don’t have a clue as to what is causing it. Once they figure out what is causing it, they will finally know how to stop, or at least control it.

But back to PTs: My first social work job was at a traumatic brain injury rehab hospital; a hospital that had an internship program for PTs. During half of their sr. year, PT students must work at a real job – but for free – for one semester. While I worked at that rehab, five or six new PTs arrived for their internship.

All of them were young, healthy and athletic; I’m sure all were phys-ed majors on scholarships who figured out there isn’t a job market out there for track and field, and that the only job their education prepared them for was physical therapist.

Young, athletic phys-ed majors suffer lots of acute injuries and usually get PT at least once or twice. They never see anyone with a chronic disability until they begin their internship, and by then they believe PT can fix anything. When chronic patients don’t get better, it’s their fault: they weren’t willing to accept the added pain that would make them better. That’s ********, but that’s what PTs believe.

Anyway, I could walk a few steps unaided and about 200 steps using a cane, but after that, walking just hurt too much. It was a huge campus and I needed a power wheelchair to get to my three offices in three different buildings.

That was just too much for those PT interns: if I could already walk a dozen steps, they knew that with PT I would eventually be able to walk a dozen miles. They made me their “project”; literally trying to shame me into doing PT by making it clear that only pussies don’t believe in “no pain, no gain”.

Hey, I was a Marine and was damn proud of the fact that I never reached the point when I just couldn’t go another step; I was (and still am) a TRUE BELIEVER in “no pain, no gain”, but not when it just hurts and doesn’t make you a bit stronger. And with nerve pain and RSD pain, PT can’t make you stronger. At best, it causes pain for no good reason, and at worst it probably makes you worse.

I really learned about PTs after the 1995 injury. Besides RSD of the left foot, I added several new back and spine diagnoses. They call it chronic pain, but all of my pain has an objectively identifiable mechanism, and most neurosurgeons agree that PT won’t help improve any of them. All of my pain has biologically useful function: it is telling me that activity is hurting damaged nerves, and hurting damaged nerves is always bad. So is hurting RSD damaged tissue.

I refused to cooperate with physical therapists except for range of motion exercises and some sort of sonic heat therapy that made my butt muscles hurt less. I had far too much experience with then to injure myself by trying to please them. I know if I had done all they demanded, I would have come out in even worse condition.

That’s my personal story, but I have talked to a lot of RSD people in the last ten years, and most of them said that PT either did not help them or that they felt worse for it. I think that’s true here at NT, and I hope that everyone will talk about their experiences and conclusions.

I think learning the personal experiences of other RSD people is the best way to sort out the truth about different therapies: If it worked for most people, it is more likely to work for you. On the other hand, if the majority say they regret the experience, you will probably regret it too.

Since yours is a work comp claim, you don’t have the right to refuse PT; they’ll certainly use that against you if you did, but you can keep negotiating with them about this. Sadly, they seem to come from the same mold as those I met, so you are going to have to resign yourself to the fact that these people are too damn arrogant to believe a mere patient.

Do what the doc said; don’t overdo it. If you do, the PTs will still blame you for not trying hard enough and complaining too much. Do what you can do, and sort it out with the doc when you see him again. From what you’ve said about him, I don’t think reports from those PTs will influence him.

It must be wonderful to work with supportive work comp docs and case managers; my five year experience with work comp was pure Hell. You got lucky there. I hope you stay lucky as you fight this disease…Vic