RSD Outreach awareness

My New Life........Annie's story

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My New Life........Annie's story

Post  byrd45 on Wed Nov 05, 2008 3:11 pm

From: Annie (Original Message) Sent: 4/19/2006 12:08 PM
Back in August '05, my right foot was involved in a crush accident. RSD set in immediatly. Since that time, I've been sent to a family doctor (my comp dr), 2 bone specialists, 2 physical therapists, the same neurologist 3 times, a cardiovascular surgeon, a pain clinic dr (for 2 lower lumbar nerve blocks, which turned into 3 due to the 2nd one being botched), and an RSD specialist for the battery test(s) for WC. All of which have dumped me, except my comp case dr, who admitts to flying blind where RSD is concerned. To date I've been put on Neurontin and taken off to be put on Lyrica and Cymbalta and then had Neurontin added back along with those two. I've tried the Catapres patches, lidocane gel and the patches and a tens unit, of which none worked and my foot got too sore to apply them. I've had x-rays, a tri-phase bone scan, a cardiovascular workup, the lower lumbar nerve block injections and the test battery. I've tried vicodan and percicet for pain. I've found that valium works the best for sleep and my lower back, hips and knees. Which I take extremely sparingly out of fear of it not working anymore or not being able to get refills. My comp case dr is afraid of drug addiction on all pain meds. Currently I've had my doseages doubled on the cymbalta (120mg) and lyrica (600mg) along with 600mg-1200mg of Neurontin a day. If none of this works, she's talking about the SCS Implant, which I'm going to fight against. The burning has already spread from just my foot, to about halfway to my knee. But the various pains are staying in my foot up to this point. My dr seems to think that Neuronttin and Lyrica are the only meds used for RSD and as far as I can tell, they aren't working. All this in only 8 months! If any of you have any suggestions on meds used to treat RSD, please let me know. The doc's asking me how I want to treat this and I have no idea. I spend all the time I have when I'm somewhat clear-headed to research treatments and such.

Looking forward to getting to know all of you -
Annie



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From: EMY2628 Sent: 4/20/2006 2:05 AM
Hi Annie,
I'm so sorry to hear all the trouble you are having in finding some relief from your pain. I too, have RSD in my foor/leg area, it started after a fall and breaking my leg and breaking and dislocating my ankle. The nerve blocks have not worked for me at all and the last one has made the pain spread into my upper thigh also. I was on Neurontin and it worked faairly well, along with a Fenttnyl Patch changed every 48 hrs, Percocet for breakthrough pain, Lidoderm Patches for the foot/ankle if I have to wear a sock or shoe, Soma to relax the muscles, Daypro for inflamation, Slanozepam for the electrical shocking feeling and to help me sleep and a counselor to help me learn to live with the pain. My pain doc recently switched the Neurontin for Lyrica as it is supposed to have less side effects, I think it's really just about the same. I also have many new and unexplained pains in my knees, shoulders and most of the joints in my body. I can only walk/stand for very short periods of time and that's with a quad cane the rest of the time I am in an electric wheelchair now. I too, have been to all kinds of doctors, including to "RSD specialists" and they both pushed the SCS. I, like you am holding out on gettting that, I just feel there is too much that can go wrong. So when I am ready to throw the towel in, I guess I'll have no choice but to have it implanted.
I'm sorry for rambling on about me, my point really was to tell you that you just have to keep experimenting with diffferent meds until you find the ones that work for you. My pain doc, really is out of his league with the RSD also, but he did send me for the opinions from the specalists and now is respecting my wishes for no more nreve blocks and no SCS yet. If your doc is willing to try different combinations of meds with you, then I say go for it, you may just get lucky or at least some relief. I will keep you in my prayers, which by the way is sometimes the only way I get relief(by praying), and hope that you will soon find the right answer for you and your body.
Eileen


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From: byrd45 Sent: 4/20/2006 2:09 AM
Hi Annie,
Great to have you here with us! Everyone is different but after being on Neurontin for two years and having some very unpleasant side effects. My doctor tried Cymbalta also which just didn't work for me. I had heard that some people with RSD had some luck with topomax and asked if we could try that instead. (Knock on wood)It is and has been working for about 6 months now. Something for you to think about anyhow. I've learned after dealing with RSD since May of 2001 that sometimes you just have to try a med and see what happens and if it doesn't work look for something else. I hope it works for you if you decide to give it a try. Also Lidocaine infusions have helped me alot with the pain in the past when it was spreading and at an all time high. They hospitalize you for five days and infuse you with a lidocaine drip around the clock. If you want info on this procedure look in past discussions. We had a discussion on it awhile back.
Love,
Robyn
Love,
Robyn


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From: shellie Sent: 6/27/2006 6:25 PM
Hi I'm Shellie. I just joined and was reading some of the story's. Ask to be put on a ostoarthritis drug. They took vioxx off the market so I was put on celebrex. It does not work as well for the deep bone pain as vioxx and it took a week before I noticed any change but the longer I am on it I know it does help some. I hate taking medication but that is one until they bring vioxx back I need. It does not help much for the burning pain but the deep crushing bone pain is easing up some.
I hope you are feeling better. To look further into treatment try rsdinfo.com scroll down after you click on what you want to read and you will find answers; the same for rsdrx.com.
I have read some contravercy around neurontin with it causing depression and a few other things. For me it caused me to gain a lot of weight, it made me feel drunk all the time and the headaches were out in orbet.
I know it hurts mine started in my foot. you need to try and do range of motion so you do not lose it. When it was bad I had to have Rancie or my son move it up down side to side. As long as they did not touch my toes I could stand it for them to move it for me. When the RSD calmed down I had not lost much motion. I wear a brace to help with the foot drop and over time I could walk with out the brace, during the major part of active status I had to use a wheel chair. It will get better; you just have to find the right medication and time. Soaking it in salts does help to. Being in water takes pressure off the joints and you will be able to move it better.
I am here if you still need to talk. Shellie
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