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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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12-29-2013, 11:12 AM
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#11 | |||
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HI,
I'm sorry it's been a long difficult road for you. I don't understand why doctors can't diagnose people correctly. I've had some experience with that. I don't know if Gabapentin would cause a rash. I'm no doctor. You can look up the side effects and see if it's on that. RSD has a lot of symptoms, not sure it that's one of them. I've been taking it for a year and it helps a lot. I had a freak accident (to long of a story) and got RSD in both feet. But currently I have it in my right foot, leg and butt. It spread from it's original spot. I might have been diagnosed from day 1 but it didn't do me much good because no one ever thought of giving me anything but morphine. I'm thankful for the gabapentin. I hope you find a doctor that can really help you. A good one that won't think you're in it for the medication.  Geesh!Good luck to you!! Heather
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--------------------------------------------------- RSD since 8/2005 Originally in left and right foot Spread in 2006 and Jan 2014 Both legs, arms. Chronic pain going back to 1992 . |
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12-29-2013, 07:15 PM
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#12 | |||
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I have to agree that u should actively seek treatment and don't give up if a dr or nurse tells u your crazy.
I am a nurse and can tell you that when I broke my ankle the ortho sr didn't believe me either that I was in pain. I constantly old him since thing was not right so I went and got another opinion and that's when I first heard about rsd. Today I have a pm, a pcp who listens to me most of the time. Recently, I started having gi problems so I am in another battle to find out what is going on. But I want to encourage you to not give up, you know your body and what is normal. Also keep in mind every one of us will experience different things and different meds work on each of us. But we will be here to help you the best we can along the way. Welcome to the forum.
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. GOD help me be faithful in the midst of my suffering. Alt1268 |
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12-29-2013, 08:50 PM
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Hey guys, sorry I'm late to this post. I've had this for 10 yrs 1 month now. I went to a bunch of Dr's that all said it was in my head and I just wanted a free high. I finally got sent to a PM Dr and he diagnosed me with CRPS type 1. It is a relief to find someone that says you really do have a problem and it's not all in your head or you are just a drug seeker. I've been on Amatryptiline and it caused mouth ulcers, and gabapentin which I didn't have any side effects from. Remember though we are all different, our CRPS is different too. I've been taking 6000mg of Vitamin C lately because I just had a C section 6 days ago and don't want this to spread from my left leg and right knee to my incision site. When I can I will start back on epsom salt soaks but can't till this thing heals. It hurts like the dickens but listen to the advice here and some of it will help you. Not all because mwe are all different. I wish you luck in finding a good PM dr. I will hopefully start back on treatment in January down in El Paso.
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12-30-2013, 04:28 AM
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Quote:
I am so with you on the meds thing. I war with myself about when and how much to take. After 10 years I have learned to live with a certain amount of pain, but to let pain get ahead of you is no good. It will take even more meds to get it back under control if it gets away from you. I war with myself because I HATE the side affects and yet to dull the pain is good. It's like walking a tightrope. It's a balancing act. BUT the more you keep those pain signals from firing the less opportunity for the brain to continue and to remember/repeat the signal. Vit C, Vit C and did I mention Vit C?? Treatment is SO important in the early stages and your best hope at remission or at least a better outcome.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004 Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else. Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb, |
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12-30-2013, 10:06 AM
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It does help if you have the right doctor in your corner. I don't believe the med. is causing that rash. Did the doctor know for sure? If this medication seems to work, I suppose because of the pain I would continue to take it. Seek another doctor and ask by phone if they have any experience with RSD to begin with. I asked my own pain specialist one time what this disease is, and she didn't really understand it. (she deals with my PN). Maybe the forum here can suggest a doctor that is highly known in your area of the country. The proper help to keep you active with a good quality of life, is something a good doctor should help you to obtain. Guess work on his part isn't fair to you. He only guessed about the rash. I know others here will help you with some good ideas too. Have you tried a Ketamine cream or lotion? I do wish you all the best as you try to find the best possible care. ginnie
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12-30-2013, 03:30 PM
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Bram thanks for the welcome. And all of your advice was fantastic. You should write an inspirational book for RSD survivors!! Great suggestions and ones I strive to do every day; some days are easier, some not so. But it's always easier with a group of friends to support you. Thanks again.
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| "Thanks for this!" says: | Brambledog (12-30-2013) |
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01-01-2014, 11:50 PM
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#17 | ||
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Hi all,
I'm absolutely positive that this rash that I have is RSD- connected. In fact, the guy in Las Vegas I mentioned looked at it and said immediately "oh, the RSD rash!" It was the first time that anyone had said it was related to anything, including the dermatologist I go to who called it "dermatitis" - uh duh. I have been looking for something that will give me relief from the itching the last week and nothing that anyone has prescribed has worked, nor has any "home remedy" like aloe or lemon or none of the others. I just tried alcohol which seems to have had an effect - I haven't scratched (or wanted to) in the past hour! Ah....the small pleasures in life!! I really understand the balancing act of meds. My oral fentanyl which has been a lifesaver for 10 years or so has stopped being that effective so my PR added dilaudid which used to work well. Now it's when and how often and how much do I take the fentanyl instead of the dilaudid or vice versa or take both at the same time and how much. It's infuriating...even after all this time. You'd think I'd get how to do this by NOW. Take care everyone and let's pray for a healthier pain- free-er new year!! Roberta |
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| "Thanks for this!" says: | Brambledog (01-02-2014) |
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