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

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

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.

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!

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.