NeuroTalk Support Groups - So much pain!!

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - So much pain!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/19369-pain.html)

Quote:

Originally Posted by RSDmom (Post 98357)

Just for comparison-
My daughter (age 13) and is a whole 84 pounds is currently on 2400 mgs everyday and has at times been up to 3600. My understanding with neurontin is that you need to gradually increase and gradually decrease the dose when going on and off of it. We have always started with 100mg, for three days, then increased it 100mg every three days until we hit the intended dose and we come off of it the same way.

I don't know why you would have the dose you have, but if my tiny girl has such a high dose compared, it might be worth asking why your dr doesn't feel you should increase. Be strong and ask for his rationale. Good luck

WOW!!! what is my Dr. so afraid of!! here your little girl, age 13 is taking 2400 mgs everyday and I can't?? I want to thank each and every one of you here for all your help. I know it hurts to type, and here ya all are, typing, sending me sites, information.. etc. your all my hero's! thanks again! Love, Desi:grouphug:

Thought this would be a great link to post:

http://www.aapainmanage.org/

Thank you Christine! I love that site. I called my surgeon who did the carpal tunnal and he said if this does not work he is sending me up to Cleveland hospital. I am not too far from Clev. so I will go. He told me he is going to butt heads with my PD and ask him why he is giving me such a low dose of Neurotin. He said he knows nothing of RSD, and I told him that I have been doing research and that I should be taking more of the neurotin, so guess he's gonna talk to him about this too. He said also, if the 3rd. neck block doesn't work, that Clev. Clinic will be a good place to go. I told him I don't like the P.D. he refered me to and I am not going back!! He said, at least go back for your 3rd. ganglion neck block.(This Tuesday) I told him I would. He said if the block doesn't help, to call him in 1 or 2 days after the block if I am still in this much pain and he and my P.D. will get together and see if Cleveland is the place for me. Thanks again all! Love, Desi

Stand up for yourself

Your doin a great job!
Dont back down from them, the worst that can happen is that they wont see and you will still be in pain.

I had run in a fter run in with my doctors staff. They would on purpose not call in the refill for 2 weeks, or schedule my appointments 2 to 3 weeks past the time frame for a refill. Never call me back!

Finally I started asking the doctor questions about it, and she didnt have a clue it was happening. She even called one certain @@##!! into the room and grilled her. All it got me was more trouble with the staff, but I felt better.

I should have fired the doctor because the doctor finally wouldnt take my insurance anymore. She said it wasnt personal, and another doctor that worked for her confirmed it was a money issue, and that they were working on replacing some of the staff because of what I had told her.

Like wiix I am now doctorless, and have to go to the ER if I need anything. So far I get treated better at the ER than my doctors ever treated me. At least they take time to understand what is goin on in the ER for me. Well except for Doc C, I wish he was still around here. The only doctor that I really trust.

I am having the roughest time of my RSD life so far. The monster has spread throughout my body, even into my upper torso. The pain is ruthless, as it is non stop! I feel like one foot is in a campfire, and the other one has a car parked on it. With a couple of spears through my right hip, and a general feeling of being hit by a truck.

Keep after those doctors, and try to bypass the staff as much as possible. When you do see that Young Doogie Howser tell him about your frustration with his office. You might be surprised by his response :winky:

Thank you Allen!! I feel bad for all the pain your in also! I refuse to back down anymore!! I will roar..:winky: LOL.. Love, Desi

Desi,

I sent you a message... hope you see it !!!!!!

Thanks
Jules

Jules, thank you so very much!! wow!! this is excatly what I needed!!! again, a million thanks!! Your a doll! Love and God bless you! Love, Desi:hug:

I second this: doctors usually have no idea what their staff say to their patients, and 90% of the time, the docs appreciate learning from their patients what is really going on out there in the front office. And they are usually furious with the staff!