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

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::mad:
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?

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:mad:

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

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

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.:mad: 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

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_

Because I have so much mobility in my limbs I don't really need anything for them. I am actually walking better now that I have gone without my crutches for a few weeks. I still hurt without them but I don't think my wrists could tolerate them. I keep them in case of a really bad day.

I have the PT clinic I am at getting me the referral for a neurologist and my case manager looking into a specialized clinic. They tried to get me PM doctor but he was booking into March and they don't expedite. So? Maybe the neurologist will refer me to one. I don't know.

Last night I was getting a lot of twitches and spasms but today it doesn't seem to bad. LOTS of burning. Sometimes I think that my pain tolerance has increased because I am getting used to a certain level of burning and pain. Kind of skews the pain scale, don't you think? When I was at the hospital earlier this week the nurse asked me what I would say my pain was at on a scale of 1-10. I said probably about an 8.5-9 but only because I know it can be so much worse. During my physical inspection by the doctor my pain went to a whole new level, probably around a 25. It is different when my feet hurt and I can barely step on them to when my entire body is burning and being poked and pressed on. They are two totally different types of pain and work on different pain scales. Strange how you can learn so much about yourself.

I do have a question though. I know you have been through a LOT. I am curious, did them putting your foot in a cast help because from what I have read assistive devices and casts can make RSD worse or be the reason for it's onset. Just curious, please don't take any offense to my ignorance.

Also, I am upset with the doctors for ignoring your leg and focusing on your arm, particularly since this is a time-sensitive fight we are all dealing with. I am really sorry for all you have been through.

Have you kept a journal or diary at all of your symptoms? I am just wondering if you had one because then it would show a time-line of how things have progressed for you, particluarly with the dizziness/imbalance. I have kept one just because my doctor didn't know what to do and I wanted to have something to take to the next one I would deal with. So far I am finding that no one really wants to read it and see what the progression has been. I am hoping I will eventually get someone to look back at when things all started for me and how they started. If the gabapentin is working and what other drugs I have been administered and the effects of those. I want everything documented. If I can get this into remission and comes back again I want to have a record to remember what I had to go through the first time, to see what did or didn't work, etc. I am terrified that the longer I wait the less there is that will be able to be done. I am also terrified that the RSD is over my body and not simply my nerves being over stimulated. Sorry, I know you have things hard and that you are here for us. I also have experience with depression to know that everything is starting to affect me.

I hope things can get straightened around for you soon. I think it might be best to re-schedule your PT appointment and go for the consultation. It is always better if they can really see what they are up against and not just working with the idea of everything. PT is going to be there the next day.
TTL J

Hi,
I really hope you can go and see a PM doctor.
My leg was put in a cast about a month after my injury. No it did not help, it made things worse. The cast was supposed to be on for 2 weeks but my mom had to ring the hospital the next day for it taking off, the pain got really really bad and the spasms got worse. I did not have so much hypersenstivity at that time though. My foot is held out to the side and I can't move it. The cast was supposed to keep my foot straight but it did not help because the whole of my leg is bent not just my foot (although my foot is the worst rotated) It was only when I was diagnosed that we found out that we should not have used a cast. I was also using ice packs on my foot, which made the pain a lot worse and caused my leg to go blue etc.
Yes I do keep a day to day diary of my symptoms. My symptoms have got a LOT worse since March. I am hoping that my mom will show my doctor the book on Wednesday. I am hoping to find a new PM doctor because mine does not do a lot for me, in fact he's made things worse. My PM doctor thinks that the balance problems are Psychological - why would I do that when all I want to do is get better?? Many of times I have sat in my house and cried because of the whole situation. I also get pain attacks because of it, do you??
Many thanks for your kind words.
Alison

I haven't read all of your posts but since you mention your wrists hurting too much to use crutches -
and this from one of your posts-
[Then not long after that, both my arms started on fire from the forearm down to my finger tips. It was really weird, all sorts of shocks, tingles and my wrists felt like they were going to snap backwards off when I put weight on them. There was also a horrible aching throb that went on. Over the next couple of days it seemed to be more frequent in my left arm. Then my right arm would hurt more than my left. This is really all within a matter of days of each other.]
I wonder if you might also has Thoracic outlet syndrome?

what kind of work did you do- repetitive , heavy lifting, overhead?
Unfortunately TOS is as confusing to Drs as RSD is.
Doesn't usually show up on MRI, NCV/EMG or Xrays either.

I'll post the useful sticky from the TOS forum so you can read some of the info there to see if anything fits.
We have some Gals from Canada going thru W/C & some have TOS & RSD.
http://neurotalk.psychcentral.com/showthread.php?t=84

I also agree with Jo, it does sound like you could have Thoracic Outlet Syndrome, talk to your doctor about it. But then again the symptoms you are experiencing sure sound like RSD.
Take care
Alison

Hi. I know I said I was going to take some time away but, oh well. What can I do? I am going to see if I have enough of my mind together to try and get some homework done today.

I don't actually think it is TOS. None of my symptoms came on until about a month 1/2 - 2 months of the RSD and all the symptoms are the same. Burning pain in my hands, wrists, forearms, shoulders, neck, back, stomache, butt, thighs (front/back), lower legs, ankles and feet. Plus the doctor I saw looked me over when I was in a full-out flair up situation. It said it was uncommon for something like this (a full body flair up) to happen but possible, obviously. I should say that he did not say it was anything but that I really need to see a neurologist because this is definately nerve related (I am talking about what is going on in the rest of my body).

I am finding that the palms of my hands get tender spots and I am starting to feel callous-like along the bottom inside, the meaty part of the palms. It is also tender along there at times. There are so many things going on. My wrists seem to have calmed down a little today, along with the rest of me. I went for a walk to get some fresh air but now every time I get up to do something after sitting for a short period of time I get really bad pains and burning in my lower legs, ankles, feet. Nothing really to get too excited about. Also, my arms (both) don't like the feel of light touch, my legs are the same way, so is my back. If I press into them (my arms or legs) it turns into a deep ache, throbs and then a deep burning sensation. I can hardly manage my bra sometimes because even the feel of the fabric and pressure tends to cause it to burn too much. I do get some muscle twitches, pulses, spasms but all of these things tend to be most predominat to the evening and night time hours. In the morning I only feel a little tight/stiff with tender feet. The burning becomes pronounced the longer I wait to get up and out from the covers. Also, nothing has been continuous in nature until this past week at Physio.


Anyway don't feel like I am making much sense anymore so I am going to go and have a nap and see if I can't wake up and do some homework!
TTL J

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:hug:

I have to type quickly because I have to go to PT. So here is the short and dirty of today's rant.

Yestereday I had really bad burning in my neck, today too. I can't put up my hair because it pulls on my scalp and it burns too bad to continue having my hair up. I went to my PT, who knows it all, and said do you know what I can do to help calm any of this down? No but you do. Excuse me? She said well if it hurts you hurt it back. Great, thanks! @$#%! She said, honestly I have never seen anything like your case before and I don't know what to do for you. Excellent! Now what?...I emailed my CM at WC to tell her that....hehehehe...we'll see.

Anyway. So, the other things that happened yesterday were after speaking to a number of people we all seem to be doing many of the same exercises, all have to be there the same amount of time every week. Two of them said they are now worse than before, one has a back injury and the other has an elbow injury. Also the one with the elbow injury said that she heard from other people that the clinic we are at has a bad reputation from people who have been there before. Oh, and the last thing was that there was a guy I sat next to in my educational session that has a soft bristle brush to work over his hand that has nerve damage. I ask who, what, how? He said because his doctor ordered desensitization despite the fact that his own doctor doesn't even believe that it will be successful for him.

Okay so maybe I need a doctor to order it for me. I also think that because I didn't have so many of the symptoms since my original visit to the doctor that diagnosed me they are ignoring everything in between and working strictly off that original diagnosis, over a month ago when I was capable of doing a LOT more. I have only gotten worse since then and no one that can do anything about it, other than my CM at WC, is doing anything about it.

Thanks guys for all your insite, stories and support. I really didn't want to be this person with PT because everyone goes on about their horrible PT stories and then they talk about their success stories with it. So I thought I won't have such a bad outlook and stay positive. My husband is even wondering what they have done to his wife, I am sure.
Hugs everyone...Have a positive day! J

Hi,
 

I agree with Jo on the TOS. It may be in the mix of what you have. I thought of that but didn't say it for some reason in my last post to you. It sounds like you might have a mix of things going on.

As far as PT, again, I believe it has to be good PT'ers that know a lot about RSD. I wouldn't do the PT they are making you do, it is just too much for people with RSD. But a gentler kind of PT will help you a lot. It's been about 3 years since I had any PT and now they have more ways of helping RSD patients as Tayla is talking about.

When you talk about not being able to pull your hair up that sounds like what I went through. One of my Physical Therapist wanted me to get it cut. I said no but went and got it thinned. I still do that. This makes me think TOS. A lot of the people that have TOS say the same thing about their hair. A good TOS Dr. would be someone you might want to see to rule it out or in.

I had 2 Drs. ordering my therapy. My TOS Dr. and my PCP and my PCP kept up with if it was making me better or worse. It's important to have Drs. that know what they are doing for you.

I hope that you start getting the help you need with this soon.

Ada

Doesn't TOS have many of the same symptoms as RSD though? Is there a definite test for TOS? :confused:

Hi Kate,
 

I had TOS surgery in 2000.

They did a EMG on me and they don't normally show a thing.

My TOS Dr. is Dr. Sanders in Denver. I saw the ones at the Vascular Institute first and they diagnosed me with TOS but Dr. Sanders ended up doing my surgery.

There is a test but I don't remember the name of it. It's where you bend your hands at the elbow and hold your hands up in the air and open and close them. This usually brings on the symptoms. You won't be able to do it for long. I always left those places in more pain then I went in. Dr. Sanders don't mess around though. I went back to that one place so many times I think I paid for their building. In the end they sent me to Dr. Sanders for my surgery.I won't say why but I was sooooo glad he did my surgery. Also they check the grip of your hand. My right one is so weak I can't do anything with it accept type. LOL

If you think you have TOS I would look for a good TOS specialist in your area. I saw 2 Neurolgist that didn't believe in TOS so I don't recommend going to one of them.

Maybe Jo can tell you how she was diagnosed. There might me more new ways then when I was diagnosed.

Hope this helps some.

Ada

Hi Kate,
There are different kinds or versions of TOS.
A basic description is something causing impingements or compressions on the nerves or blood flow in the brachial plexus areas{ scalenes, clavicle, top rib, extra cervical rib, large muscles or ligaments, etc}

Here's some of my fav websites that helped me to learn, besides the forum.
TOS info:
http://www.medifocushealth.com/RT017/index.php
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.doctorellis.com
http://www.cwce.com/feinbergarticles/tos.htm
http://www.tellmeabouttos.com
http://www.vascularinstitute.com/Resource_TOS.htm
http://drbrantigan.com/about/index.htm
http://www.ecentral.com/members/rsanders/
http://www.causeof.org/posture_tos.htm
http://intraspec.ca/tos.php

There isn't a clear perfect test for TOS, unless you do have the extra c rib or bony structures.
It is usually a process of elimination of other causes - like cervical spine injury and such, then add up all symptoms.
But very much like RSD you need to have knowledgeable people working with you. And if you happen to have the combo of TOS- RSD- Fibro you really need some experts or ones that will want to learn and treat you one on one, not with the standard treatments that work for acute injuries.

Burning Neck
 

I definately feel worse after O/T! The night she was pushing on my neck I had severe burning pain which caused me to cry like a baby in pain. I felt like I was burning to death!

My face get's numb and tingly as well, sometimes. That's when my neck bothers me. I just think it's the CRPS travelling or sending weird messages to my face. Ugh.

I can totally relate.

I had to suggest to my O/T that she should measure my arm to make sure it isnt getting worse or if it's possibly getting better (deflated). She said it was a good idea but got caught up in making a full arm splint which totally...SUX when sleeping.

Okay...that's all I have to say for now. I'm concerned it might not work either now that you mention it!:hug:

Greyhoundlover, Why do you have a splint for at night? Did I miss something? Did you have surgery? Sorry, it is just normally bad practice for someone with RSD to be in devices. I am right out of it these days, so again I am really sorry for my ignorance, I am just concerned for you.

I was offered a contrast bath yesterday but my PT/modalities person. I said no, not that. I told them before I would not do anything with hot/cold or ice. I know already what the cold leads to and how badly I respond to it. I don't have meds to help me get through something like that. I also said I don't have enough faith in that treatment to believe I will be better for it in the long run. So, no.

I know many people have had good results from it but I also hear a lot of those same people who have RSD for a second round and don't respond at all to the contrast baths or extremely poorly to them. So, the theory I am working on is that the exposure of the nerves to the coldness of the water for an extended period of time eventually damages the nerves, rather than causes them to become desensitized. In effect, it seems to damage them further in the long run. Nevertheless, I was trying to convince myself that maybe I should try it because I am in so much pain but no. I don't have the meds to help me get through that and I won't be told that I am responding badly because everyone seems to at first and then gets better with it.

She didn't even ask me first about how the TENS unit worked or anything. I was totally insulted by her attitude. She did ask at first but then it became, so you are not even willing to try something that is going to make you better? I have had a lot of success with this treatment. I simply said, I am not willing to risk the long term damage it may cause. Pick something else. She got up and walked away. Great! I would be nice is she offered something else but I also had an appointment with the psychologist for hypnosis. The whole time during the session I spent trying to get out a yawn, I didn't want it to be too obvious but it was one of those yawns that if you try too hard it won't happen. The other thing was that my left side from the neck down through my arm wanted to cramp up and pull in and my right side kept twitching. All I really wanted to do was go to sleep. He thought it went well. I thought it took forever and that him talking the whole time was actually annoying. I guess I just don't have it in my to relax when someone else really wants me to. LOL!

I did talk to several people yesterday, our information session yesterday was the role of the client and therapist. HAH! I would not have wanted to be the woman teaching that class. We did take it pretty easy on her though. After we all lost it! It was really funny. But the truth of it is. No one is really very happy about their treatment there and most of them find they are getting worse or have other pains and are being told by their therapists that they must be doing something wrong, it is normal, it is not related to anything they are doing at the clinic or can't get the therapist to give them the time of day! One of them have the same therapist as me and he has similar problems and he agrees she is completely in opposition to everything you tell her. She spends SO much of her time finger pointing elsewhere we might as well be elsewhere. Unfortunately, too many of these people can't get a hold of their CM at WC to do anything about it. ERRRRR......

Anyway. I am in rough shape these past couple of days. I may not be here evey day simply because I hurt too much and am too tired to make it to the computer. Plus I have a lot going on here that I am trying to manage at the same time. I would like to be more supportive of you all, I am sorry I can't be around more or post more elsewhere. Thanks everyone though.

TTL J

So today. I was told I had to wear shoes.....That it was their boss that said so. The one said, could maybe try wearing your sox with your sandles, whereas the other one said, you should be wearing shoes and maybe just ones that you didn't tie up tight or have the laces in......

I am going to ignore the second solution and go with the first. At least I have been trying sox and only because I found a really great pair of soft ones that are low cut. On bad days, like this morning seemed to be I could barely tolerate that.

Did we ever get into it though. I told them I don't want to be there. I asked why they even wanted to me to go to them when I am in pain because I have been told "well it isn't...." and "What do you want me to do about it?" They agreed they can't do anything about it, it is merely "Good to note". I told them I want a second evaluation of what has gone on with the rest of me since I started, and had the original diagnosis. The one thought I should get another opinion about my original injury and see someone, maybe go to a walk-in clinic about it, and the other things going on. Oh, ya. I live in Canada okay. We have the doctors take care of A LOT of things for us. Well this one PT is telling me I should be trying to get a new doctor if my other one doesn't want to deal with the CRPS and medicate me for it. Yet, she is suggesting I go to joe blow at a walk-in clinic?! She says my goals are too high and that at that rate I will never get one. I told her that the regional health board told me that what I need is a specialist and that the doctor through their own office is trying to get me a specialist but it is all taking time. It is not like I haven't tried but that it is difficult when every place I call says, your doctor needs to be the one to call these places and make the referrals. I HAVE TRIED!!! I also don't just want a doctor to medicate me. I want one to explain things to me about ME and see what is going on with ME. They just don't seem to get it. Thank God I have such a wonderful CM with WC. She has gone out of her way to get me appointments with specialists and is trying to get me into this wonderful clinic that specializes in CRPS. She is the one showing compasion and understanding.
That clinic. It is a 2 day interview and screening process!

"The CRPS program provides early diagnosis and intervention for clients with CRPS to improve function and achieve return to work rates with durable outcomes. Treatment includes sympathetic nerve blocks, physical activation, education, skills acquisition and ongoing psychological, physical and functional evaluation by a Physician, Physiotherapist, Pharmacist, Psychologist, Occupational Therapist and Kinesiologist"

I would have to be away from home. It is just so much harder to be away from him through this than when we worked opposite shifts from one another. If it will get me through this I have to try anyway. They have a pretty strict screening process but as you can see it isn't very often you find this combination in one place. I have a feeling I won't get in because I am not an extreme case, meaning I have pretty good mobility with everything and I don't have chronic discoloration or swelling. This is also why the one therapist doesn't think I have CRPS but she has never seen it swell. It does, not very often but when it does it is usually in the evening.

Anyway. You can see I am still playing the waiting game. Looking forward to Tuesday. Take Care. J.

Night Wear
 

Hi J.,

I'm not sure why they are splinting my arm at night, I think it might have to do with the fact that my entire extremity is swollen and they think if I bend the arm at night the fluids wont shift?

Does that make sense to anyone?

Thank you for your concern, I'm glad I have people guiding me along here. I am totally new at this CRPS stuff! :confused:

Good luck on Tuesday! :Good-Luck:

Heh, I would REALLY start asking them questions about that splint. I mean I don't know a whole lot either about CRPS but from everything I have read we need to minimize any use of supports or devices of that sort. I don't know though. Has it helped at all or do you think it is making a difference? One thing you can do is to experiment with it and measure your arm around, all the way down and/or around your upper chest, anywhere you feel/see swelling with and without the use of the splint.

I can't imagine you are getting a decent sleep these days. Sorry you have to go through that. Oh, what meds did they give you to try? Are they helping with anything?

Hope you find some place in your mind to escape all of this...TTL J

Splints
 

Hi J,

I'm currently on 300mg of Neurontin twice a day. It did take the burning away from my arm which took place months ago. But now it seems I have burning in my neck and tingling in my head and even teeth sometimes. Especially after O/T.

Maybe I need to increase my Neurontin, or maybe the face sensations have to do with side effects. Not sure. But the burning on my neck and shoulders are somewhat like a painful sunburn now. I had a harsh burst of the burning RSD pain a few Fridays back though! OWE!!!!!!!!!

Most of my pain now is in my arm, not burning but somewhat of an aching and cracking feeling. My arm is sore in different spots when touched or moved. My shoulders and neck are constantly burning now...but not as bad as my outbreak of fire as mentioned above.

I sincerely hope you get help soon, it sounds horrible, what you are experiencing. I will say a prayer for you and hope that you have a more pleasant sleep tonight.

Yes, the arm splint totally sux!

Please keep me updated on yourself! ;) :hug:

Splinting
 

HI THERE,
Just a quick message to say that I hope you are all Ok.
Be careful when splinting a limb affected by RSD it can make it worse. I had my hand splinted a while ago to try and keep my fingers straight because my arm was in a fist. The splint turned my arm purple and the spasms forced my arm back into a fist so it didn't work.
Take care everyone
LOVE Alison

Greyhoundlover, I never did hear back from you about how things are going with the splint? Did you try with and without to see which you do better with? I don't want you to hurt yourself further. You know yourself better than anyone.

Let me know. I hope things are well for you.
TTL J

Hi there!
I was just wondering what it was that lead you to believe that a TENS unit could cause damage or exacerbate the RSD? I hadn't heard of any research that implicated it in the spread of RSD, and it really can be pretty effective. (I know this personally too!) A TENS really is just an external spinal cord stimulator- it works exactly the same way. If you wanted to discuss this, just send me a message- I'm actually a neuroscientist too. So I can help translate some of the literature, cause sometimes it's dense. And I was diagnosed with RSD when I was 11. Best of both worlds!
Linnie

Hi Linnie,

I missed your initial post here and didn't welcome you (posts can move pretty quickly here).

You might want to reconsider your offer to translate research articles and links posted here, there are a lot of them and you might find it a full-time job.

Anyway, welcome. I wish the circumstances that drew us here weren't as they are, but we can't change that...yet. You have found a great place with really good people; they have certainly sustained me through many rough spots...Vic

Hi Vicc!

Thanks for the welcome. I actually joined about a month ago, but then was a bad person and abandoned all of this for a while. (Pneumonia, school and a death in the family . . . bleh!)

But now I am going to try to be a fully participating member! At least, that is the goal! I've had RSD for over 14 years, and I just turned 25 (I was a competitive gymnast.) So I have seen the ups and downs of all this for a while, and I'm a bit wiser than most people my age. I've had a SCS for 6 years, and it has really been a live saver. That and MBSR- mindfulness based stress relief. It really really helped me with my depression, and dealing with the pain. I honestly think that MSBR is the single best thing I have ever done for myself. Well, and having dilautid for break through pain! :D (I don't know about you guys, but it took me a very long time to give into the narcotics- I was very against them for so long. So stupid! The stigma must be removed.)

But I am a brain dork, although I have decided not to go into pain management- a little too close to home. But I still love my neuro, and because I am a tutor, I think that I'm pretty good at explaining things to the lay person. But not every day! You're right on that one!

Linnie

Heh Linnie, Thanks for your offer and input!

Sorry, I didn't mean to say that the TENS unit was bad. I mean the hot/cold contrast bath. Cold is not a friend of mine and I refused a contrast bath because cold doesn't respond well with me and the pain of it lasts for a lot longer than she thinks it should or will. I did end up telling her that I would try it as a LAST resort.

Just something I noticed about people who have had the contrast baths, got their RSD into remission and then the RSD came back later, for whatever reason, to the same area. It appears that the contrast baths are a one time deal. They work the first round but not the second. Have you found that in your experience or noticed it in the postings here and elsewhere? That might be a research topic for you! LOL! I am just thinking that maybe it works too well at desensitizing the nerves. Who knows but I don't want to be another test subject to find out.

Nice to have you around.

TTL J

odd one out
 

I have done physical therapy and a program where pt was part of at cleveland clinic. I will say the one not at cc the pt I let touch my legs and he stretched and messaged it. I will never do that again. I was in the worst pain even weeks later. Then I read that in rsd you should not let someone manipulate your problem area. I won't even let the doc touch them now. In cc I did some and had mixed feelings. In the pool my issue was the temp and that they also had men swimmers who made huge waves that felt like a gun shot to the leg. I wouls be open to the pool again but in a warmer and calmer pool. The best for me has been walking now outside and trying to build time.

while the results in pt are different for every patient that distinction seems to be magnified when dealing with crps/rsd.
i think the biggest deciding factor regarding a positive vs. a negative experience is the knowledge of the therapist. i have been in pt for a total of about 14 years so i have had a lot of experience with both the good and the bad. while it is great to find a pt who has handled a lot of crps/rsd patients the best pt i ever had was one who when he first encountered me had never heard of rsd but he was willing to learn. the first thing we did was lay down some ground rules, i was willing to try anything but if it really hurt we stopped. we worked together for the better part of two years and because i was basically the pateint he learned from he did his homework. he got online and looked up everything he could find, he called every doctor he read good things about and asked for advice, and most importantly he made sure that myself, my doctor, and him talked about what was working and what wasnt regularly. he kept a journal in which he wrote down everything he read about, everything we tried, and how everything effected me. he wasnt the most knowledgable pt when it came to rsd/crps when started but by the time he moved two years later he had more hands on experience than most specialists. in addition to learning himself he made it a point to hold clinics for all of the pts in the clinic so everyone of them (pt students included) knew everything he did about what works and what doesnt. to this day he may be 2,000 miles away but we remain in email contact. when he attends a confrence on the subject he always asks me questions about the treatments he has learned about. when he has a rsd/crps patient who is struggling he emails me with questions, and i try to give him suggestions based on things that have helped me.
pts go to school for years to learn about anatomy and injury related rehab, however very few pt programs require students to spend time focussing on pain patients. for the same reason a gp doesnt have the knowledge to treat a chronic pain patient as well as a pm or a neuro, the pt struggles. until all programs require students to focus time and knowledge on chronic pain we as patients will continue to have to search for pts will first hand knowledge. if you can get into a pt group that is affiliated with a pain clinic that is probably your best bet, for those who cant do that (myself included) the only option is to go to the pt office our doctor sends us (a pm or a neuro will probably have better recommedations). if you are uncomfortable with the pt with whom you have been assigned write down your concerns and discuss them with your doc. maybe a alteration to the pt program can solve the problem, if it doesn't than your doctor should be able to help you to find a more compatable pt.
if a pt is beating you up in a session to the point that your pain is off the charts for days or weeks following the visit something is seriously wrong. the only way rsd/crps paitent is going to improve is to find a comfortable balance between the amount of pain they experience during the session and the amount of time it takes to recuperate. the reality is that without motion our bodies shut down. for those of us who have experience dystonia we would be willing to suffer a great deal if it meant that we would be able to function when the pain subsided. the reality is the longer your body either fails to function or funtions in an abnormal way, the harder it is to return to some sembalance of normal. my dystonic foot existed for 2.5 years, i had my scs in march and that allowed my body to correct itself but only so far. now i have to wear a brace in my shoe and one while i sleep and while there is obvious improvement the reality is the road back is extremly long.
some pain is good but both you and your pt need to be comfortable with when it is ok to say enough. if a pt wants to go from taking your history to massaging or active stretching i would proabably say thank you very much but i dont think this is going to work and walk out. a slow introduction to range of motion or passive streching is a good place to start. while the excersises may not seem particularly challenging it is a good way for your pt to get an idea of where you are at physically. once that baseline is in place they can add a little challenge into the session slowly. a good pt will add some more challenging excersices in a session and then the next time they see you take a few minutes to see how you did following the session. if you were miserable for days or continue to be miserable days later than the routine needs to be reevaluated, if however you were feeling beaten up when you left and over the next day or two things improved and you return in the same condition you were in for your previous visit then things are probably going along ok.
the hypersensitivity treatments are the most difficult, because anytime anything touches the effected area the patient is immediatly in high levels of pain, however the desensitation is necessary. a good pt will start out rubbing a pillowcase over the area for a predetermined amount of time. if you both agree before you start that the pillowcase will be applied ten seconds on ten seconds off for 2 minutes you will know that you can count through the ten seconds it is applied and you know that the pillowcase will be applied 6 times so you cant each one. that way you can feel in control of the process. you can do the 2 min drill as many times per session you can tolerate (again it should be an established number) so you are very aware of what you will have to go through and how much you have left.
once you are desensitized to the pillowcase if you have an upper extremity presentation you may want to ask your pt if they have the heated corn air mix circulation machine (not sure of the name...maybe some one else knows it). you put your arm in the box and warm (not hot) corn meal circulates around the area. almost every upper extremity rsd/crps patient i have talked to who has tried the box says that it is wonderful.
if a pt tries to put an ice pack on an rsd/crps effected area they obviously dont know much about the disease.
a pt who treats rsd/crps patients needs to know that they arefor all intesive purposes placing their trust in their hands. if that patient feels like that trust is broken as a result of negligence on the pts part (making a patient hurt for days or weeks after is unacceptable) then the patient will assume the pt doesnt know what they are doing and are going to continue to hurt them. this relationship will never work. a patient has to trust that the pt has their best interest at heart and they would do nothing that would intentionally hurt the patient (being sore for a day or 2 is ok). without trust the pt experience will be a failure.
you need to find a pt who pushes you but not so far beyond your limits that you are effected for days.
i hope this helps
i have seen the good and the bad...the good may start out bad but quickly correct the problem, the bad continue to display behaviors that make the patient feel uncomfortable and as a result the entire intention of the patients visit to pt is a failure.
the only way to have a positive pt experience is to be your own best advocate. if something isnt working tell them why, and what could be changed to fix the problem. if the problem isnt resolved following input then the best thing the patient can do is move on to another pt and try again. if a problem with insurance arises as a result go back to the doctor who wrote you the script and ask them to alter your script (tell them what you experienced and what you thought would have helped) and ask for a new script. that way the insurance company will understand why you are switching to a different pt and not fight the additional charges.
hope this helps

Nice to meet you and great post there wakegirl! I agree with you 100%. Thanks to people like you, others here and the web I am beginning to understand more about physio for CRPS/RSD.

coachvand and Daniella. I would love to try the pool. I have heard it is wonderful and great for those with lower RSD/CRPS. Hopefully this new place will have the pool.

The RSD/CRPS is starting to wear me down emotionally and mentally. I still have yet to have someone actually expain anything to me. I me, about me and what is going on with me. My physiotherapists told me to come to them when I was in pain so they could SEE and understand.....had expressed my opinion to them about that one (every day lately my left wrist wants to just drop. I don't know why or what is causing it but it gets painful and then just wants to drop. urgh...). I think I also mentioned that here also, about not being able to SHOW her things because it isn't something she can see and that is why she thinks it isn't there. Though she is suppose to be the expert! Anyways, I digress.

So, physio is now the following:
Wearing runners (yesterday was first time and my doing) HURTS LIKE A B%^#$ard! But I did it and am going to keep trying to do it.
20min treadmill
Squatting with a ball behind my back and standing on a half moon ball thing
leg presses on a machine
Adductor/abductor pulls with a rubber toob
Obstacle course
more stretches (about 5 types of stretches)
Repeat as many times as can within 3 1/2 hours
30min-45min of one-on-one for
desensitization with cotton balls and macaroni and manipulation stretching
Did I mention yet, I hate this place?

So, I am suppose to go to for an assessment at this other clinic next week. It is a day and a half meeting with everyone there - doctors, pts, neurologist, psychologist, etc. As part of my recovery team they review me and my meetings with them and see if they can help me and if I am a good candidate to get into their program. I was told that on average their programs last about 6 weeks but I think this is just an intake person and doesn't really know for sure what CRPS is.

Can anyone tell me how long a person should expect to be in pt when they have CRPS, early stage and good ROM? Basically if I can get my strength up and get desensitized I should be good to go. That's what I am thinking but no one can tell me anything. What is the average? Even with good ROM and maybe poor-good strength? What is to be expected? Does exercise - stretching and weight bearing activity for a person with CRPS in the foot (still possibly in feet and neck/face/head) - make CRPS go into remission? Oh, plus desensitization 4x week. How long can desensitization take? I mean really, I can handle quite a bit one day but the next I am upset or something and everything drives me off into the deep end.

Like I said. I am down and out this week and having a hard time trying to pick me up again. I am tired, learning sleep does not equal actual quality sleep and that is stacking up on me. I keep getting told, you can't hurt yourself doing anything here. Sure, okay whatever. They have asked me to explain to them what 'over do it' means and how that is possible. Can anyone help me here with that one? How can I explain it to them in a way they might be able to understand? They seem to think that if I am hurting it is just because of not using a certain muscle group or....they have a reason for everything and only when I tell them, not I actually didn't do that today or that at all, I get, well I don't know you must have done something because you can't over do it or hurt yourself with what we have given you.....ugh. Like I said. I am tired. Help me out if you can. Thanks. J

Has anyone done fluidtherapy? I think that was the name I did it at cleveland clinic. You put your legs in this machine that is filled with sand. The machine goes at different speeds and temperatures. You gradually build up time and speed. This is suppose to desensitize the nerves.I understand about needing to move the effected areas my issue is with a person touching me is that one my pain is not always horrible immediate but the aftermath is hell. Also it just takes someone to do too much or stretch the wrong way. I can see why it is so important for the person to know about rsd.
Kyzy is this a day program? I just ask cause I did well only made it through part cause my pain level was so high but at cleveland the day program is m-f 8 hours a day. I'm like you about the overdoing it so I understand your fears and concerns. I don't have advice cause I'm trying to find the balance of pushing but not going past my breaking point.