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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Ok, hello everyone, old and new. I have been out to lunch for a while as my wheel fell off its axis. The Guinea pig who was happy sitting in my cage being stared at occassionally was taken out to be examined under a microscope and stabbed and poked. I thought all was well for a tiny second, things were going smooth and I had me a doctor whom I adored, I thought I had clearance to see her exclusively and I was on the road to at least managing my pain in some small way. Then Murphys Law took effect and everything went to h***! My doc who I still love was doing research and decided topamax might be a good idea. But she wasn't sure, so she decided to send me to a neurolgist to see if the mixing of the two medication Lyrica and Topamax would be a good idea. She had also changed my sleeping pill to the highest does of restoril since ambien had stopped being effective. Now my doctor that I love is an internal medicine doctor on a military base. I had seen several, some had hurt me, some didn't have a clue about RSD, and some just didn't want to be bothered. My IM doc was the first to listen and care and that is rare so I worked hard to get her as my primary care doctor. So off I go to see the neuroligist who is a 20 something wonderboy who thinks he has seen it all and knows it all. He changes all my meds, takes me off the high dose restoril to the low dose, puts me on flexeril, and cancels my prescriptions to my acid reflux meds that I have taken for 20 years by accident.and cancels my lortab and schedules me for another nerve block with only a local which I told him has been known to fail on me in the past. BUT wonder boy knows best and gives me a valium and starts poking away. Low and behold...local fails, I come off the table and the first thing the nurse does is grab my TAAA DAAA KNEE guess where my RSD is? You win! My knee. I scream DON"T TOUCH MY KNEE!!! They give me another local... poke poke poke local fails again, I jump nurse once again grabs TAA DAA KNEE AGAIN!!! I scream! and finally wonder boy turns to the nurse and says oh she has RSD in her knee try not to grab it. DO ya think! mean while I am still sobbing from the first time. I turn to one of the other docs in the room and say you people are just about the meanest I have run across in awhile. Get ready for this bedside manner... there is nothing keeping you glued to that table, get up and leave. Yeah with an epidural this time and a needle in my back, you betcha... Meanwhile I can hear my husband out in the hallway demanding to be let in the room asking for a mask, forever my cham[pion defending me. But of course they will not let him in. So he stands at the door looking in the little window with blood in his eye. All this for a med question. So after the procedure I came home took the flexeril like wonder boy wanted and slept for 26 hours. Can't take flexeril apparently. Took an act of congress to get ahold of wonderboy to get my lortab reissued as my IM was on vacation. I was told not to take restoril and lortab together but with the lower dose of restoril I was waking up twice in pain to take a half a lortab just to sleep 6 hours. And he never addressed the topamax issue. After much confusion and a week of not knowing how or what happened we finally got a hold of my IM doctor who then informed us that wonderboy is also a pain management doc, something he failed to inform me. She still wanted me to go and ask him one more time about the topamax as she thought it sounded right but she just wanted to be absolutely sure, and she prescribed me a cane as well. She said stop by the front desk and make an appt to see me in a month. So I did, oh oh. Front desk said you are not assigned to her, you have to go back to family practice. I was shocked. I had been seeing her for three months. So I asked to see the patient advocate, he said there was nothing he could do. I was livid. So I went to the hospital patient advocate and she said she would work on it. I got my month appt. went to see wonder boy, he saw my IM docs questions and said "Well we won't be doing another nerve block, they do not work on you" REALLY!!! He prescribed a ladder presciption topamax meaning I take 2 a day for 1 week then 4 a day for 1 week than 6 a day and so on til I take 10 a day with my lyrica. He put me back on my high dose restoril, but he did request that he remain my pain management doc promising that he will not do anymore procedures. I do not have a problem with that. Well I am on my third week with the topamax. I had to take two weeks with the 1st dose as the side effects kind of kicked my behind. So I am now taking 4 a day with my lyrica. The good news is I am down from 4 lortab a day to 2. The other good news is that I am a bit on the fluffy side and I have lost about 10 pounds because food has turned rancid to my taste buds so I am living on ensure. Although to people who do not have a weight problem that might not be a good thing. Sodas are a huge YUCK even diet ones, it is the carbonation. So I am drinking more water than I ever have because I have never been a coffee drinker. Alot of vitamins are going in too. I am still struggling with the side effects of topamax and was wondering if anyone else has dealt with any them ie: the tingeling, the slight pressure in the sides of the head and the giddyness, and how they overcame them. and if they have any food suggestions, I need tasteless stuff that will give me enough protein to not feel weak or dizzy. All food and drink(except water) taste rancid and rotten to me. But the benefit to my RSD is amazing so I do not want to stop. It is awesome to stop taking so many lortab. I love it. So any help is appreciated. Still waiting on the dr situation, will know more after the 12th. Will try update more. Sorry for the book.





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