Post Edited (skrape) : 6/12/2009 10:23:38 AM (GMT-6)
Post Edited (skrape) : 6/12/2009 1:57:32 PM (GMT-6)
Post Edited (skrape) : 6/12/2009 3:23:53 PM (GMT-6)
I am so glad to hear that you have found a new PM dr to try. I do hope this one works out because you need a new doc desperately. I remember all the crap you have gone thru with the one you are seeing now.
Please give this new person a chance to see if he can come up with a better plan than where you are now. At this point in the game just about anything would be an improvement for you. Do not count on the new one making it all right on the first visit either, ok? I would make a list of meds you have been on and how they worked, make a list of all test and procedures and what benefit you got from them. No, it is never good to go in and bad mouth a dr to another dr. I think if you tell him what your dr has done to date, including cutting the patches in half he will get a real good idea of the care you have received. Let him know for sure how you are doing with the patches, thats real important.
Just tell this dr with all the care you have received to date none of it has helped your pain to the point you had hoped it would and that you are getting to the end of your rope. That right there will tell him how you are doing. Tell him you hope he has something to offer that will give you the break you have been looking for. If I remember are you self employed or am I thinking of someome else. If its you tell him how its affecting your work. If you have had tests done be sure to get copies of the films like for an MRI.
Its ok to tell this dr you are disappointed with how your condition is getting worse instead of better. Do not ever come across as being suicidal, that will get you a boot out the door and told to go get mental help instead of pain mgt help.
I will say a prayer that you have found a good dr to help you, I know you need one in your corner for a change. Susie
Post Edited (skrape) : 6/12/2009 3:49:49 PM (GMT-6)
Post Edited (skrape) : 6/12/2009 8:41:03 PM (GMT-6)
When it comes to your primary care physician I want tell you that how you describe him is frightning. It doesnt "seem" to me that he understands the gravity of his decisions on your life. That alone, would frighten me to no end. Perhaps your pain management doctor has a "recommendation" of who he/she works well with. In my case, all of my doctors work together. I know they are an odd bunch. But they are men and women I trust with my life. They would not hurt me. You should not stop looking until you find someone who understands you as person as well as the physical barriers our "shells" present. It is okay, and totally normal to not like a doctor and his/her manner of praticing medacine. Sometimes, for what ever reason, two people just dont quite see eye to eye. (kinda worried about that guys other patients thou, my gosh)
As to the scoliosis. I have something they call levoscoliosis. It is my understanding that the degenerative / arthritic changes can cause alot of pain. I too get injections. Though I get them regularly.. sorta. Sometimes works a little longer like 4mos. Another time I made it to my procedure appointment having never gone above 6 pain level. So that really really good. But, at first, some would work a little while, other areas stayed relativly pain free entire time. So the start up is slow. My start up, to get to where I am now, took about 3mos. from my first appointment with spine specialist. Hang in there and know he is trying very hard.
Looks like you and I have had similar therapies. You said soemthing thou, and wanted to ask about it. In refrence to your "tremors" you said.
"More than a few doctors have told me that it is unrelated so I have to defer to them. "
It would be a very good idea to bring this up during your visit. If he doesnt already notice on his own. I bet he can help. If nothing more, than to steer you in the right direction.
On this last part. I think it is important to tell your doctor about this ~~~>
"Your insight here is very helpful. I did not think it would be good to tell him/her that I am suicidal, partly because that's not quite the way it is. It is hard to explain well and I am afraid I would be judged before I could get it worded properly. I may be overreacting a bit but it is because I have NEVER had thoughts like those in my life."
It IS super important to tell your new doctor that part. You know how many differant things can miss fire, or over produce / unproduce in the human brain / endocrine system? Alot I tell you. Serious. Think about it this way... Basically when were in pain our bodies are in a high state of alert. And ALL the time. There are SOOOoOOo many things that can happen in our horomones and glands with chronic pain patients. I knwo that part is awful reality.. BUT! These pain management docs? They know their stuff. Know precisly what to do. What to test for. Wouldnt it be just silly to find out it is all perfectly okay, and they know what to do about it? Without ruining your life (dont you just love the way TV / Movie portray stuff?) Any way. Give it some thought. If it is out of charater or only been happening this last year or two.. it would be well worth your while to bring up these feelings of confusion and desperation.
Hang in there. You can do it!
Skrape, I have not responded to your plea for help but after taking time to consider what you have said in the various posts I felt compeled to share with you. First, I want to tell you that I accept what you are saying is the absolute truth regarding the way you are feeling. There is a sense of hopelessness that each of us who struggle with CP face at one time or another. I also believe that the degree of hopelessness is not the same for everybody for different reasons. I don't think this is the time or place to even try to identify all the reasons, they just exist.
The main question that you are asking is how do you approach the new doctor with this feeling of hopelessness and share the depth that it has reached and the reason is due to the pain that you have experienced for several years as well as all that the pain has taken away from you. Just as your pain is real, so are all the things that you have lost due to it. How do you share this so he/she understands the seriousness and that you need to find hope. What you are asking is not to have all the pain taken away, but you want to be able to function. What good are you if you can't function? You need to help the doctor to understand what it would mean to you to be able to function. They can't and won't know that unless you are able to share it. That is what Skeye was stating when she talked about painting the picture.
You already have the list of medications that you have tried, the procedures as well as options that you have tried and their results. I would encourage you to comprise a list or at least some ideas that you feel would give you a sense of hope and restore a simblence of normal life. This could help your doctor in understanding what you are asking he/she to do for you. The depression that you are experiencing is a result of that hopeless feeling. The doctor can't turn the clock back to before you were injured and I don't think this is what you are asking for. You would like to be able to sit or stand long enough to work enough hours to help support your family. You would like to be able to find something that will lower the pain level to where every day activities are able to be done. I think this will take the focus off the depression and help the doctor to evaluate what you want and if that is something he/she can help you attain.
Just know that it will take time as there is not a simple answer and they might have to start over and try combinations of medications as well as diagnostic tools to help them understand what is the source of your pain. You will have to allow there to be time to have the hope return. I hope this helps, as I have read and reread your posts tonight. You are not alone.
Post Edited (skrape) : 6/16/2009 3:52:58 PM (GMT-6)
I guess you didn't see my post that if this new guy only does injections to cancel the appt because they do not give scripts for meds. They only do procedures. OMG, I feel so bad for you. Can you go back to your PCP and let him know this, get him to take over until you can see a neurologist?
You simply cannot just give up. I know right nw everything seems to be stacked against you. but please call and get an appt with your PCP. Someone can help you, its just the matter of finding the right dr and that is so hard to do I know.
Post Edited (Dani Henson) : 6/16/2009 5:31:59 PM (GMT-6)