Has anyone here been required to do physio without a medical doctor included in your program? I mean a doctor that is included in what is going on with it.

From the original diagnosis what was your treatment? Did you have blocks first/meds first or PT and then doctors later?

Anyone following a WC claim?

Just curious I don't know what is considered the standard procedure.
Thanks
J

HI,
I do Physiotherapy just with my Physio's they then tell my doctor how I am getting on etc.
When I was first diagnosed by my PM doctor I had a Guanethidine nerve block with Physiotherapy and Occupational therapy etc.
About a week later I was put on medication and seen by a Psychologist. Do you see a Psychologist? if so do you find them helpful?
Love Alison

Hi,
By the way the nonof the treatment I have tried so far have worked
The guanethidine nerve block made things worse for me, it caused me to lose my balance (I still have not got it back)
Physiotherapy - not worked:
Psychological treatment - not worked, don't see my psychologist often enough.
Tablets - nothing helped so far. I have being on Morphine, Tramadol, Paracetamol, Amitriptyline, Ibuprofen, Gabapentin, Lyrica etc etc
Pain free hugs
Alison
PS: How are you doing???
Does PT help you?

Hi J
I have had PT with my pain management Dr. getting the results of what I could, douldn't do? If I missed any appointments. So, Yes, he was involved. From my original dx it was pain meds and PT from my old PMD. Now about the nerve blocks, I have them first, take my meds then do the PT. wishing you the best. ~Love, Desi

I was a WC. My 1st round of PT was ordered by the first Ortho I saw. He wanted 12 session they only approved 6. He gave me klonodin pills and something else at first but that was it. The PT reported to him.

My 2nd round of PT came when the 2nd Ortho saw some atrophy in my left thigh. He ordered 12 sessions, I was dismissed after 10. I was given lortab by him and tried Neurontin but that turned out to be a VERY bad thing for me. They reported to him on my progress, or lack thereof, that time.

The 2nd Ortho also ordered a bone scan before I even saw him. Then sent to Neuro, talked PT at me and I told him no way, no more. Brought him up to speed on what I had already been through. PT was only making me worse. He gave me pain med, ordered my one and only block, and emg and another bone scan.

I'm not sure there is any standard procedure to follow in what comes first. I would think that the doc who ordered pt is the one they report to and of course they also report to WC on what's happening.

Hugs,

Karen

Being a WC case I was instructed to see a WC referred doctor after about a month of my doctor failing to understand what was going on. He said right off the hop CRPS but kind of dropped it until I had the results from an MRI and Nerve conduction. MRI and Nerve conduction showed nothing. The Doctor that did the nerve conduction said to be careful of PT and not to let them over do things. He also said before the test that he was positive it was CRPS. He told me, just because you have a headache doesn't mean you have a tumor and that not all things may appear to be what they are. He wants to see me again in 6 months if I haven't responded well enough to the treatment plan I am subjected to between now and then. Nice man.

So, anyway. I got the diagnosis and sort of treatment plan from this doctor but I don't get to see him again. The only thing he has done is try to make a referral to a GP, Chronic Pain doctor or Neurologist otherwise there is no further involvement on his part. His original recommendations were CRPS, put on gabapentin and do functional assessment. He hasn't even seen me since things became more consistent and wide spread.

Now I do 20 min on inclined bike, and stretching exercises. I got one treatment with the TENS unit. I also saw the psychologist. He said I have a pretty good attitude towards getting through this and I was asked to try hypnosis to see if it would work to help me sleep a little better and learn to relax a bit. He did say that he doesn't usually have success with CRPS patients in helping them reduce their pain. So we are going for relaxation and sleep. I'm okay with that. I also told him what I was being told by my PTs and wasn't too happy with the program that has been set up for me despite the fact that I would do what I was told until I am told by a real doctor to do otherwise or suck it up and continue on. I did tell him that my symptoms have gotten a lot worse, that I didn't know what was going on and that I was concerned my RSD had spread (prior to PT), that PT was making it worse or in the least aggrivating it. I did tell my PTs what I was experiencing and they said CRPS doesn't spread, your symptoms don't even sound like CRPS, "maybe you just have a slow healing time", "I've had patients a lot worse off than you", whatever is going on with the rest of you is not related to your original injury so it is up to you to deal with that, etc. The psychologist simply said, have you seen a doctor about this. I told him the long winded story about trying to get a referral to a knowledgeable doctor. He said, well are the PTs doctors? No. So, what do they know? Furthermore, until you have seen a doctor about any of this no one should be giving it a diagnosis. It should be what it is, additional pain and is real for you and a hinderance to your progress. He seemed okay but in the end I wasn't too crazy about him.....

As you can see PT is a sore point with me. I keep telling them that if I didn't have the pain I do, everything else would be a breaze and I would be back at work. Just help me get over the pain so I can get my work boots on and do my job. Unfortunately, that was prior to my wrists getting so bad and the rest of me burning all the time. The past two days wasn't too bad because I was so drugged up but then it just seems to come back soo much worse when the drugs wear off. Like today, I layed down for a nap and when I woke up I could feel my whole body burning, even my nose and lips felt strange. Movement just irritated it more. It is all so strange because I can touch my arms or stomache and ya it is uncomfortable but if either the hand is left there or when it is removed, it is all kind of delayed in response, I then start to feel like a cold heat. That is if it is a light or mild touch. If I squeeze, I get a burning which turns into a throbbing ache and then more deep burning....I am using my arms as an example. My face just feels strange, kinda numb.

Does anyone else get muscle tension or muscle pulses? I am being told that is just because I am not used to all that physical activity, that I have just been inactive for too long now. Granted I have gained 20lbs in the past month, I think that is why I have to do the inclined bike for so long and so often. It is marked down in my PT program. After seeing that doctor at the hospital this week they have also written down that other areas seem to be a problem for me. I think that is coming from my Case Manager. She is working really hard for me to get me the best care possible. She knows I am running on a timeline and that mine seems to be out of wack with the norm. It is nice to have people on your side that have the ability to make things happen. It also helps to persuade me to do the things that she says are necessary for me to keep my claim going smooth.

Anyway....tell me more about you guys.....J

Hi there,
I am sorry that you are having such a rough time. Physiotherapy can make the RSD worse. I would speak to your PT's again and see what they say. Do you do any Physiotherapy tasks at home? I do, I have to try and bend my knee, really painful for me to do, touch my leg again really painful to do because of the hypersenstivity. Have you tried 'mirror therapy'? In mirror therapy you have to move your good limbs in front of a mirror and it should help your brain to think that your bad limb is moving - its not helped me but it might help you.
This is a website telling you all about mirror therapy:
http://www.rsdalert.co.uk/treatments/mirror.htm

I have not found anything that helps me so far
Yes I do get muscle pulses, it is a symptom of RSD. It does NOT mean that you are doing too much.
Speak to your doctor about something called Dystonia, which many people with RSD develop. I have Dystonia. The symptoms of dystonia include:
Muscle spasms/pulses (however this is also a symptom of RSD)
Poor movement
Locked limbs (eg, unable to move the affect limb(s))
Balance problems
It sounds like you could have Dystonia, with you saying that you have muscle pulses, do you have any more of those symptoms listed above??

I have tried the TENS unit but this did not help me, I found it too hard to place the electrodes on my foot

Take care and if you want to chat, I am here
Love
Alison

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

I can't believe that you're having to go for 4 hours a day. No wonder you're in such a bad way!! That is wayyyy too much time!!! I only went for 1 hour 2 days a week the first time and 1 hour 3 days a week the 2nd time. The 1st time I just did most leg exercises and stretching stuff and leaned to walk on my own again. The 2nd time I was supposed to do10 or 15 min on a stationary bike and at first could only do 5 minutes then would do more leg exercise/stretching stuff.

Most of the time through both times I was sent I didn't even make it the hour because it was just too much. I couldn't do it and would just lay there and cry or I knew I couldn't do one more thing and told them I'm not doing it, I hurt badly and have no meds. I can't take this pain as it is!! They didn't like me much but they can't force me to do it. The saying No Pain, No Gain DOES NOT apply to us!!! My 1st pt lady was really nice and knew something about rsd so when I was all done in she'd take heated towels and wrap my legs in them. It helped to calm the pain some as well as relieve a bit of the muscle spasms and soreness in my muscles. The 2nd lady was just stupid and she's the one I flat out told I'm not doing it and ice, are you crazy??!! Nope, you ain't touching me with it! She saw after 6 or 7 sessions that I was getting worse but we kept on till 10 before she dismissed me writing down that my condition was as good as it was going to be and that staying in pt any longer was going to keep worsening my condition.

I think that pt really did "help" to spread the rsd so fast throughout my body. That combined with no pain meds to calm everything down and it was like wildfire. I liked the pool therapy the first time round but only wished it had been in a heated pool cause the regular pool had very chilly water and I'd be hurting so bad and freezing by the time we were done. I got home as fast as I could and soaked in a very hot tub of water for about half an hour to get the feeling back in my fingers and warm me up.

*hugs* to you and I hate that they're putting you through this. I don't understand why there is no doc to oversee the pt and well, frankly, you shouldn't even be doing anything without a doc monitoring the situation and adjusting things as you go along. I hope something happens for you soon so this torture will end.

Hugs,

Karen

Hi ,
A GOOD physiotherpist who is knowledgable about CRPS/RSD will not concentrate on "torturous" techniques but on graded motor and mirror imagery.The will also concentrate on keeping our limbs moving within our own particular boundaries.
I have physiotherapy twice a week and my limbs are not touched.
Perhaps I am extremely lucky but over the last decade I have never been to see a physiotherapist whom I didn't consider having my best interest at heart.
I am sorry for those of you who have suffered at the hands of what seem to be poorly trained and uninformed Physiotherpists but CRPS and the correct treatment thereof is taught as a very large part of the training these days.
Hopefully this will mean there will be an influx of PT'S who deliver up to date care into the system.
Take care all
Tayla