Quote:
Originally Posted by screwballpookie
First I would like to say welcome due to this unnecessary pain. I have had rsd or crps for almost 8 years now and had no diagnosis of it until 3 years after I got it. I know the feeling when it feels as if your doc has given up on you. It seems I have a lot in common with you in other ways. My pain started in my dominant(left) hand and has gone into my shoulder neck area of the left side. I am having the same symptoms in my right hand and am having a lot of pain in my knees, calves, and feet and it seems as if my pain doc has given up on me. I am fighting with work comp as we speak because it was a work related injury. My attorney even said it sounds like my pain doc is just tired of me and just wants to give up on me. I asked my attorney what does that do to the patient? He says I know. I said no you don't know. The pain is getting worse and my pain doc won't do anything for me and I can't get him to refer me to a neurologist with it being work related. I can't do it on my own because I have no health insurance and can't get any due to my rsd. The pain doc is my authorized doc so he has to be the one to take care of me and make my referrals. So I guess I can say I am screwed. I am scared to death of what might happen if they don't do something to help me soon. I am so afraid of being in a wheel chair at age 35. I am like you I don't have any friends around my area so I am a loner. My family has given up on my so I feel like I have nothing. Life just isn't fair. Some how some way we all pull through our trial and trebulations but we wonder how. You sound like you are a very strong person and I know you can make it through this. WE all stick together on this website so you have nothing to worry about. You can talk about anything or ask any questions and we will all do the best we can to help you and others. Good luck and you are in my prayers.
Sincerely,
Tracy(screwballpookie)
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You are such a sweetheart!! I am so sorry for your ordeal. As if you don't have enough to deal with regarding the pain, to not have your own DOCTOR support you is a tragedy. I'm sorry you feel your family has given up on you. I doubt it is YOU they have given up on (though you may perceive it as that and FEEL that way). It could be that they simply feel helpless, which is a bad feeling in itself. We all tend to gravitate towards pleasure and away from pain (avoiding what hurts us). Any one of us would understandably choose pleasure instead of this pain we endure. Our loved ones simply HAVE that choice, unlike us.
I am fortunate in many ways to have such a supportive husband.....but am alone and isolated from everyone else. My children don't understand what I have and they just think it's going to take longer for me to heal from the surgery than expected. I try to put on a brave face as much as possible.
I would ABSOLUTELY try to get a new pain doc if you can. There is power in numbers.....get someone to go with you to your next appointment and point blank tell your doc (with your "witness" present) to refer you to another doctor that will appropriately care for your needs. If he truly wants to get rid of you, he should be happy to oblige. Get your lawyer to write a letter to him or something. I have issues with docs in general and I choose to be VERY assertive when dealing with them. No one else is going to care about me more than ME!! I actually got one to write a letter of apology to me once!!
It always surprises me when someone tells me I am strong. I've been told that before, and I don't see myself in that light at all. I suppose we all just do what we have to do to survive. I am certainly no stranger to adversity (my life story could be a tragic bestseller!!) and I just plug on....mostly for my kids. I think that ANYONE that has this disease is very strong to survive it. We may FEEL fragile physically, but our SPIRIT is strong.
We all have a purpose in the puzzle of RSD. Our bodies could hold the clues to a cure, or experiences could inform someone else along the way, our story could encourage someone to donate to the RSD foundation......who knows what kind of impact we could each have if we look for those little opportunities that life brings us??? I honestly believe that a cure or a reliable treatment WILL BE AVAILABLE to us in our lifetime.
I hope that none of you take offense to me joining this site yesterday, just having been diagnosed a month ago, trying to sound like a "perfect pollyanna" or something. I have NOT suffered the years from this that many of you have.....I am so deeply sorry for each one of you.......and while I pray for a quick recovery or remission for myself from this (and for ALL of us), I will forever do whatever I possibly can to help further awareness about this disease. If I DO have a remission, let them run tests on me to figure out why (and hopefully help many of you in the process!!). If I must endure this for years, I hope to be an encouragement or a support to someone else in pain.
Please take care and write me ANY time!!! I will NEVER give up on you and am always willing to listen to how you feel!!