Thanks Alison,

I really don't like the place I am in physio but I don't have a whole lot of choice because this is a WCB claim. They call the shots. My Case Manager is incredible and supportive but has discussed several things with my PTs and seems to think they do have enough experience with CRPS and I just need to trust them. I asked her why then, given my condition, is desensitization not even on the map? She thought that was a good question.

I really hate my PTs. I know they are just following the program they have been told to and are doing what they know but it just isn't working for me. Yet, it is just too early to say one way or the other. I am just waiting things out until I see the Neurologist and find out if I qualify for this other clinic. At least at the other clinic they have a whole team of specialists - pharmacy, physiotherapists, anasethiasts(can't spell - the person who does blocks), etc. Plus they have an area for those people who are in the trades and all the tools of the various trades so as to incorporate the use of tools and activities into your daily routine. I do have to admit that I am really nervous now about going back to work in my trade because stupid accidents, minor ones happen all the time and I am afraid if I get this into remission and go back to work it will come back and I won't be able to get rid of it again.

Of all things this is the one thing I did not want to hear that I had. No one does. I am just scared all the time because more pains just keep getting added to my list. I am confused as to weather they are real half the time or not because they come and go. Then I go and do something like put my hand/arm behind my head and then my arm starts to burn. I keep a journal of all the symptoms/pains/experiences because it is hard to remember pain when it is inconsistent or you have to move it or be doing something or it isn't the same all the time.

Getting back to my PTs. I have told them many times that certain exercises cause me pain in both my wrists and ankle or that lying on my back causes it to burn worse. They just tell me that I need to learn to get past that. That the only way to deal with CRPS is to do to it exactly what it doesn't want so it is going to be painful. This is what I am dealing with and just have to get through for now. Also I can't take my meds when I go because they make me soooo groggy and out of it. I have to drive about an hour to my PT place. They tell me that it is a bad idea not to be taking my gabapentin because I need to get that build up in my system. Sure. Okay. So what do I do? Allow myself to drive while under the influence, so to speak? They say they care but don't offer any real solutions. When I told her how much pain I was in on Wednesday, I mean it was REALLY OVER THE TOP BAD, nothing like I have EVER felt before. I was told, well when it is really bad you need to come in because we need to see so we can help you. I went in. I told the one how bad I was, boarderline tears, and she told me well you just need to try and do what you can to get through your exercises. I tried and I cried and I tried and I cried. There was no offer of support no real concern until I put on my things to leave, I was leaving early, and she said 'let's talk'. Okay, I was told that leaving early wasn't a good idea because I really need to do what I can to see these things through when it gets tough. I said you say you care I am in pain and throw around 'pain management' all the time but here I am in pain and told to tough it out. I don't see anyone offering to help me with it or through it, the day before I was in agony and I couldn't find a therapist around to help me nor a doctor! She said well they can't be around all the time and was very sorry about that - okay whatever. I am not up for apologies or excuses because it was my SECOND DAY and she should have known that the first week is the most difficult for people and that maybe sticking around to make sure they are okay would be the right thing to do. We are merely cogs in a wheel making our rounds through the system. She told me that she 'understands that I am upset and that the pain is not allowing me to be myself' (I can't believe I fell for this at the time. I think I just wanted to get away from there and go to the hospital.). That she wants to help me become the person I was before all of this.....on an on. I am cranky again. I don't want to talk about them anymore because I am trying to 'trust' them and the program they have set out for me. Not that I believe it nor really trust it. I am just waiting out my time until I see that Neurologist. I told them that if I didn't have pain and could get a boot on I would be back at work and not here, especially since they have nothing new to offer me in the way of this condition. URGH!

Going now......talk to you later. J

Heh, just a quick question. Do you ever feel like you are having a bit of anxiety and then get a nautious feeling like you could be sick? I get that quite a bit lately and I don't know if it is just because I am stressed out about things.
J

Hi,
Yes I do feel sick and vomit quite a lot, I think it is because of the anxiety/pain/medications etc.
I would speak to your doctor about it, he can give you anti-nausea tablets than can work
pain free hugs
Alison

You are such a sweet heart. Thanks. I will ask my regular GP about it. I do agree that it is probably a combination of factors stress/meds/pain.

I think that this within my GP's realm of knowledge. She doesn't deal with me in regards to the CRPS thing even though I have to see her every two weeks for an update to submit to WCB and refills on the gabapentin.
TTL ...happy thoughts and dreams...J

Hi,
Thanks for your sweet reply. My doctor does not deal with the RSD situation either, he says that its up to my PM doctor to pescribe me with new medication. My doctor does not really understand RSD
I have all of my medications on repeat prescription so my mom can just take a card to the chemist saying what I need and they will get them for me the next day.
I really hope you are feeling better.
Keep us posted
If you need anything I am here
Thanks
Pain free hugs
Alison
-x-

Hi,
 

I finally got all of your thread read. It takes me awhile to soak it all in at times.

My thought would be to you to get an attorney. IF you have already been diagnosed with RSD then that is a good thing in the way of getting your Social Security and getting the help you need.

As far as work, we do have some on here that work part time I think. I don't know about full time. I haven't worked since 87 but I started with other medical issues before I ended up with RSD.

Hopefully the Neurologist will offer you the right help you need such as blocks, meds and better PT.

If they offered me that kind of PT and that much, I would walk out, to hell with WC or SS. That's where a lawyer would come in handy. They will help get the point across that there are certain things you cannot do.

I spent 4 years in PT. I had a total of 5 PT'ers. Only one in the bunch tried to make me ride an exercise bike and do other machines. That lasted about a week to me. He didn't seem to last long, I don't know why they moved him. I ended up with a good husband and wife team in Physiotherapy and they were the best I ever saw. They had trained in Holland and over there they seem to think that massage and touch is better then the machines and weights. I never did either except for that week. They used heat on me and did lots of massage and gently pulled on my fingers and hands to deal with the TOS and the RSD. Never rough with me.

You sound like you were in the exact same shape I was in. I actually had friends that didn't think I was going to live long. I was blessed though with a great PCP.

It's good that your GP says she knows nothing about RSD but it surprises me in this day and age that she isn't familiar with it at all. Maybe I am wrong though.

Also another thing that could be going on with you along with the RSD is Fibromyalgia. It sometimes comes with RSD as it did in my case. I would ask the Neurologist about that. It causes all over pain as can the RSD spread. So then you have a combination of both going on and it's hard to seperate the symptoms.

I am so sorry for what you have delt with. It sounds horrible and I know it is horrible. When you see this Neurologist ask for a block to see if it will help for the RSD.

As far as meds. I didn't find any that helped until I ended up on Methadone. A lot of people can't take it but I am on such a low dose now that I don't see the side effects that others did. I tried the Moraphine patch, pill, Neurontin, Vicoden, Percocet, you name it. None of it did a thing for me.

Others will come on here with some info on meds that might help you and what they did to deal with the RSD.

Good luck with what you are going through. I have 2 friends that got lawyers involved in their case and the lawyers intervened with what was done to them. This is just a thought on my part but I am thinking if you have RSD and go full bodied you may not be able to return to work.

Ada

Ada,
Thank you for your thoughts and support. I live in Canada and have a really great case manager with WCB. She is really supportive and tends to be more realistic about what to expect given that I have been diagnosed with CRPS. She said she didn't care that the PTs thought that whatever else is going on with me isn't related to my initial injury but that she fully believes it does. She also thinks that their 8 week RTW program is a little aggressive and not very realistic. Every CRPS case she has dealt with has taken much longer. She is working very hard to expedite doctors appointments and is trying to get me into a specialized clinic. She tells me to keep the emails coming about what is going on with me and to phone to let her know if anything is urgent or I need to talk.

I want to stay confident in the thought that this will go into remission. I need to believe that right now, however difficult it may be. I have to try with my PT program. If it over stimulates me then I will have to find a way to explain to them what is going on and if my case manager sees this happening as a regular occurance then she will step in. We are trying to help each other get this resolved as much as possible. I just need to have faith that I can get through this, even if I am deluding myself and my chances....I will tell you why. There was an older man that I worked with, a pipefitter. He lost his lower left leg to an injury and suffered from phantom pain. For the most part he managed and when he had bads it was obvious. I was very hard for me to see a man of his age and experience to cry for a limb that ached with pain but was not longer actually there. He really was a different person when the pain took over. It made me ache with pain for him when I looked into his eyes and let him tell me about his pain. I will never forget him, the look in his eyes or the story he would tell me. I never want to be the person tell another about that kind of pain. I know my pain can be bad now but I have to get past this. I have to keep the fight in me, as I am sure so many of us can understand....I told you, I am feeling weak these past couple of days. I think I am going to take a day or two away from the computer to try and pull it together. I don't mean any offense to anyone but I am spending too much time thinking about all of this right now and ignoring those things going on around me.
Talk to you soon. I hope you understand. Best of pain free days to you all. J