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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Has anyone ever had a day like mine?

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    Old 05-12-2006, 11:01 AM   #1
    cskud
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    Question Has anyone ever had a day like mine?

    I was diagnosed with RSD in Jan of '04. Went to PT for 2 yrs with fairly good progress. I now use a cane and can control my pain with neurontin,robaxxin,tramadol and trazadone. But yesterday was not a typical day.

    I began having a headache early in the day. My affected left foot started turning blue-black and felt sub-zero cold. I could not keep my eyes open in
    the house because of the glare. When my housekeeper started to clean, the fumes were overwhelming; I couldn't tolerate the sound of the vaccuum.By early evening I was in tears and felt totally disoriented.I also had sweats and chills off and on all day. I even was incontinent.(Not a usual condition)

    I have never experienced anything like this. I started to wonder if I was having an autonomic nervous sysytem breakdown. If anyone can shed some light on this, I'd be grateful. I'm feeling like a first class kook today.LOL

     
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    Old 05-12-2006, 07:51 PM   #2
    Skooze
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    Re: Has anyone ever had a day like mine?

    Hi cskud and welcome to the boards! It's a great place to ask questions. Sorry I didn't see this post sooner! Yes I have had some very bad days like yours. The neurontin mad med, how much are you taking a day? I felt like that taking that drug. You should read upon that drug. There are plenty of threads on this board. That drug made me bedridden, and the smell of food or anything, made me nasueous. I too had not black and blue , but deep purple colored hands. That dug willmake you very dizzy too. I never walked into more walls, memory loss, confusion, you name it. When I watched tv, I had to mute the food ads, I think you need to find a new doctor, because your meds don't sound right. Have you tried seeing a pain management doctor? Get a referral from your pcp. If you are taking any dose 1800 mg a day or more, it's only going to get worse. Where is your RSD? Did you get it from a work accident? Hope this helps and keep in touch.

     
    Old 05-13-2006, 10:36 AM   #3
    cskud
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    Re: Has anyone ever had a day like mine?

    Thanks Skooze for your reply. I AM seeing a pain specialist. I have been seeing him since an ortho diagnosed the rsd. I had fractured my left heel. The heel healed perfectly,but the pain escalated. I am presently taking 1800 mg of neurontin and have been for almost two years. I had dizziness when I first started taking the drug but it would come and go. My memory is shot and sometimes I feel like I'm in a dense fog, but I have had that prior to neurontin. I should add that I was diagnosed with fibromyalgia 15 years ago. "Fogginess" is a big part of fibro, so I never thought it was the neurontin.

    if you have had good results on other meds, I'd like to know what they are so I can discuss them with the doc. I really would like to end my hyper- sensitivities;light and sound are the worst. I don't want to wear earplugs and sunglasses in the house,but it may come to that!( It's so hard to be sexy with this RSD thing, ya' know ?)LOL

    You are right...this board is a great place to think out loud. I am sure I'll be
    a daily visitor,poster and sometimes a complainer too.(Family members can just stand so much)

     
    Old 05-13-2006, 07:17 PM   #4
    Skooze
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    Re: Has anyone ever had a day like mine?

    Hi cskud! Glad you got this message. There is a rather long thread that I started called is Lyrica better than neurontin. I have nicknamed the drug neROTTEN! Yes it will make you very dizzy, and increase your memory loss, along with vision and dental problems. Do an internet search onit and you'll see what I mean. I personally called Phizer, who makes the drug, and they said it was not approved for RSD! They got slapped with a huge fine, the 2nd largest in history, for promoting it for off label uses. Try reading through some past threads. You need to taper off this drug. Alot of people have here on this board and switched to Lyrica. They still have some dizziness but it is alot better for the nerve pain. I also was sensitive to sounds and light as well, but not anymore. After your off the NeROTTEN, you'll experience the NeROTTEN hangover. It took me a good year to get rid of the side effects. I'd be driving and forget where I was going. Things of that nature.
    What kinda pain meds are you on? I was pretty much bedridden for 2 years after my surgery. I'm sure the Nerotten had something to do with that. I'm currently on 60 mg of MSCotin x3 a day, 5 percs for breakthrough pain, 3 soma, 3 xanax, and remeron to fight depression and to sleep. That drug knocks me out like a light. I also use aSTS machine that is not a TENS or MENS unit but works like accupuncture. That got me out of bed, and regulated my eating and sleeping habits, That and the morphine. What is robaxxin? The other 2 drugs I've heard of. Is one an anti depressant? I hope this helps you. How old are your kids? I have 14 and 19 year old daughter. Liked them better when they were small. Have a good evening Aloha Skooze

     
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