Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 11-10-2007, 03:47 PM #1
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Default PT - Your experiences?

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
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Old 11-10-2007, 03:54 PM #2
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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
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Old 11-10-2007, 03:59 PM #3
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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?
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Old 11-10-2007, 04:08 PM #4
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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
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Old 11-10-2007, 05:57 PM #5
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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
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Old 11-10-2007, 10:53 PM #6
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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
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Old 11-11-2007, 04:21 AM #7
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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
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Old 11-11-2007, 09:37 AM #8
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I do get muscle twitches, pulses, tightness - like my muscles don't want to let go and keep pulling in but it doesn't actually look like anything and I can still move it (my arm mostly) - Actually about a month ago my leg would feel like it was on a tight string and being pulled in toward my chest. That happened a couple of times at night but I haven't had that again. I do seem to have really good movement of all my body parts. I just get various muscle things going on, like last night the muscle spasms in my lower back and the burning running up and down my spine was crazy.

Anyway. No I haven't been given a home program to do. Apparently that isn't part of my PT program either. I am simply expected to do 4 hours a day at the clinic. Like I said. They claim to know so much about how to treat CRPS/RSD but really I have seen very little that is close to what anyone else does. I am guessing it is because they don't really think I am all that bad. I still have to do what I am told for now. When I see the neurologist I will talk to him/her more about my PT program. I had a hard time trying to get the people at the clinic to understand that I don't just want to see a doctor who can prescribe the meds but rather I want a doctor to help me understand my progression and what is going on with ME. I kept trying to explain that I want to see a real doctor about this. That I need someone who can take the place of my GP and see on a regular basis for updates. Everything with this place has been a chore. I think I am going to talk to my Case manager again to see what they have told her about all of this. I think they talk a good talk but that is about it. The one PT I have is all about being brutal. If it hurts that is good....not from what I have learned about this.

I don't know much about the mirror therapy I don't have too much faith in it from the little I have read. I also am running short on 'good' limbs. LOL.

The pain throughout my body seems to have taken on a constant theme now. I am burning from face to foot now since yesterday and before then Tuesday - Thursday. I seemed to have got one day of incredible relief, Friday. I was so suprised but then it was all back Saturday.

Blah blah blah......TTL J
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Old 11-11-2007, 10:54 AM #9
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Hi there,
I am so sorry that you are having a rough time - I hope things pick up for you((hugs))
Mirror therapy works on many people if you catch RSD in the early stages, for example 1 to 2 months before injury. Mirror therapy helped my arm, but not my leg. I think that you should be doing Physiotherapy at home too - maybe talk to you Physiotherapist about that. Its not fair on you having to travel to the hospital every day. I see my Physiotherapist once a week.
I don't see my PM doctor that often, I maybe see him every 3 months.When I was first diagnosed I had to see him every week to check on the medications etc. My nurse rings every month now though. I am going to see my PM doctor on Wednesday.
Neurologists can be quite helpful, however from what I have read PM doctors are more understanding (although I don't like my PM doctor) If I was you I would go see a PM doctor. Many people have to try different doctors before they find one that they like. Most GP's don't know what RSD is, my mom printed my doctor an information sheet about RSD for my doctor and he found it very useful.
I would talk to your doctor about Dystonia is sounds like you have some of the symptoms.
Have you tried any braces on your affected limbs? they can help. They don't help me because of the hypersenstivity.
Take care
Alison
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Old 11-11-2007, 10:56 AM #10
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One other quick thing
My Physiotherapist sounds like yours, she uses the saying "to hurt is not to harm" I too disagree with her.
Love Alison
_x_
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