Well now I am a little freaked out. Ada my heart goes out to you. You had me in tears, not only because I am scared but because you had to go through all of this. It really does sound the same though. It does filp-flop between left and right arms but is predominantly in my left arm. My neck is making me crazy with the spasms and cramping. I am reminded of this as I type now, my whole left side from my fingers all the way up my arm to my neck want to pull in. What is going on? Do nerves really have that much control over muscles? Or is it the other way around? I am now wondering about my back and shoulders if they aren't burning because of muscle tension. Could be, I'm not sure anymore. I will have my doctor take a look. My PTs are useless to me now.

Yesterday at physio I noticed that by the time we got into the education session, 3 1/2 hours into physio that my toe nails were grey and the palms of my hands moddled. By the time I got home later everything was back to normal, well as normal as can be. Does anyone get that?


The heart racing seems to come with spurts of energy. It isn't me doing things that causes it to come on. Like if I am at the computer it will start and then I can't sit still anymore. It is different from the nausea that I was getting before. I am thinking that is stress related because if I get too worked up about something, being kept in a situation and not being able to get away from it, like being in physio and them not understanding the level of pain I am in and not being able to do anything about it nor leave to get away from them. That kind of thing.

I was looking up some things on Fibro and it says about headaches and dry eyes. Before I started on the gabapentin I was getting horrible migranes and constantly putting eye drops in. My right eye was also getting red a lot but I thought it maybe alergies, strain or dryness. It still gets red once in a while now and a week or so ago I had dry eyes again but never thought anything of any of it until I was reading about Fibro. It says though that you have to have the symptoms three months before it can be diagnosed at best. Is that true? My arms though really do at times feel exactly like the pain around my original site so I don't know. I don't know anything any more but I will ask my doctor to consider this when next I see her.

I just can't get over the burning in my face. I had forgot about it for a while last night before going to bed, then when I put my face into the pillow!!!!!! That was unpleasant! Good thing for fuzzy soft blankets. I managed with a corner of my blanket over my pillow.

I hope the neurologist is thorough but not crazy long term with testing. He is recommended by a doctor that has some understanding of CRPS. So? Next week seems so far away to start walking the path in search for more answers.....I will keep you updated as things progress.

Thank you everyone. I am really glad to be here and sorry that you are all here and, at the same, time happy you are....TTL J

while there are certainly some physiological reasons for the symptoms you are experiencing, however there are also some significant psychological ones. when we experience pain and frustration it can often result in a spiked heartrate or other physical complaints.
the stress of crps wreaks havoc on our systems. when those symptems present dont treat them like random occurances instead consider the mental roots that may be the cause of the problem.
this is not to say it is all in your head, it most certainly is not. i simply meant that far more often than we can recall the physical and the mental blend and often times the results are frightening.

Thanks everyone. I am going to talk to my doctor about the Fibro thing. I read a bit on it and am wondering now just how much of this could be Fibro. I doubt my doctor is going to know much about that one either but heh, gotta try. Do the symptoms really have to be there 3 months or longer to do the 11/18 point test?

I am in a bad way these past two days. Everywhere is bad and I don't know how much more I can stand. It really does make a difference for me to have just the one or two areas in pain compared to now with everywhere in pain. If I loose it in physio and they tell me I need to learn to manage my pain I iwll tell them where they can take it! At least yesterday I got to show the one how the temperature changes in my fingers. One minute they are both warm. Then I start doing something and the fingers on my left hand go cold. Just the fingers though. My right hand doesn't seem to be quite as affected as my left but that seems to be the common thing over my whole body.
One week....then the neurologist....TTL J

I am so sorry about your problems KZYZ, I really hope that things start looking up for you. ((hugs))
Your need to stand up for your self - don't let the Physiotherapist tell you to work through the pain if it is too hard for you. Physiotherapists, doctors etc don't understand how bad the pain is so they tell you that you have to work through it, but it is easier said than done. If you don't like your Physiotherapist then ask to see another one or go to another hospital. I hate my Physiotherapist, doctor etc so we are trying to get a referal to another hospital,
Take care
Alison
(hugs)

I must have pestered my CM at WCB enough that she has got me into a more complex program at the clinic I go for physio. It involves one-on-one time with a physiotherapist doing some desensitization and manipulation. Then I have my regular stretching and exersizes to complete. I meet with the psychologist 2x/week. I also do more with TENS and hopefully something else, other than contrast baths. They know I won't do them and WCB knows I won't do them. I still can't even get them to look at any of the information I printed off, included some of the other stuff I have printed off. That really bugs me. They also don't like me on these boards. I told them too bad. I think I am old enough to make my own decisions thanks. The psychologist says 'Good for you for sticking up for yourself!' Whatever. It is my body and my life.

Anyway. I am looking at another week until I can get an appointment for the evaluation process at this other clinic. It will be a two day process but well worth it if I get in. Here's to hopeful thinking!

I hope things are progressing for others here. TTL J