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

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

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