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  • RSD spreading or eat more bananas?

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    Old 05-25-2011, 03:03 PM   #1
    deltagrits
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    RSD spreading or eat more bananas?

    I appreciate anyone's advice, experience in this matter, or just opinion. After being dx's w/ RSD 10 months ago in my right foot, I thought I had this all down. The crutches, the therapy schedule, the shower chair, the MD appt's , the fighting w/ work comp, ect. Then, out of the blue last Wed. during my 10 min walk in the therapy pool, my right calf muscle was very, very tight. Went on w/ the rest of the therapy stuff. When it came to the 12th circle of hell- the treadmill (walking with full body weight on both feet, including the RSD foot), after about 10-15 seconds I had to stop. I fell over onto my PT'ist b/c I couldn't stand. I thought I had a cramp just below my knee in my calf. It was still sore the next day. Friday at PT things were fine. Monday, things were fine, but that tenderness, soreness, whatever you want to call it was still there. It felt like the cramp could return at any moment while I was on the treadmill (whole 60 seconds!!! go me). When I put my right foot down flat, I feel like I'm stretching that muscle.
    Secondly, when my leg is not elevated, my shin and lower leg do start to discolor. I turn "speckly" like a new born baby when they are cold. As long as my foot and let are elevated, neither turn colors. When not, both do.
    Today, at my normal appointment time, I mentioned this to the Dr. He thinks my RSD might be spreading upward. I don't have any sensitivy to touch, or anything like that to my leg, but could he be right?
    Could this horrible disorder be spreading? Is there ANYTHING I can do? Please help? I'm miserably sick over the thought of this disorder progressing and winning the battle for my body.

     
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    Old 05-25-2011, 05:43 PM   #2
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    Re: RSD spreading or eat more bananas?

    Hey delta, I started with RSD in my left foot. When it spread up my leg to my hip that is exactly how it started. I still dont have the sensitivity in my leg just my foot where I had my surgery that started this mess, ai also have the sensitivity in my right hand where it spread after a nurse busted a vein trying to start an IV, and sensitivity where it spread to my incision sites on my back and buttocks from surgery to have a spinal cord stimulator implanted. I also have RSD in my entire right arm up to shoulder in left arm and my eyes.
    Funny to think of it now but all my hyper sensitivity to touch is only where surgery or trauma sites are.
    kelly

     
    Old 05-25-2011, 06:51 PM   #3
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    Re: RSD spreading or eat more bananas?

    thanks so much for the information. So does this sound like spreading to you. Just the discoloration and possibly the muscle contraction/ stiffness? When my MD said that to me today, it just crushed me. Absolutely crushed me. If I can't make progress on my foot and it's spreading, then what am I supposed to do. I'm maxed out on my medications- or at least I think so. What if anything could I do differently?

     
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    Old 05-26-2011, 12:07 AM   #4
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    Re: RSD spreading or eat more bananas?

    Mine is in my left foot. I have some numbness spreading up the calf, but no hyper sensitivity to touch. I also have tightness in the calf muscle, and my right calf has been trying to charlie horse alot recently. I never connected the charlie horses or tightness to rsd. I guess I try to ignore things as much as I can. Thanks for the post. I will keep track of this and see where it is heading now.

     
    Old 05-26-2011, 07:02 AM   #5
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    Re: RSD spreading or eat more bananas?

    Hi Delta, yes it sounds like spread to me, ask for a lumbar sympathetic nerve block right away! When my RSD spread to my left hand and arm I got a nerve block just a week later, and it really helped. my left hand has RSD but I do not have any bad symptoms there. I am very careful with my left hand because I know any injury could awaken the rsd there and causse the same horrible pain I have in other places. My PM doc told me we were lucky to catch the spread so quickly. Now let me explain somethings, I originally got RSD in left foot from surgery in Dec 09 it had spread up my leg to my hip by Feb 10 I was not Dx with RSD until April 2010. The nerve blocks only lasted for 2 to 3 days, but mind you I had already had RSD for 4 months in my foot and 2 months in my leg. When the vein in my right hand was busted from trying to insert an IV the following week I had another stellate ganglion nerve block for my right hand. It only lasted 2 days. Now let me try to put my thoughts together and explain my theory lol. For me what I think is that natural spread (spread not due to another injury or surgery) can be quieted or stopped with nerve blocks if caught very quickly. But RSD spread due to injury or surgery is not as easy to deal with. This is just my own belief for me, with my personal experience, but everyones RSD is unique to them so it may be different for others. Ok as for the cramping, big part of RSD in the beginning, before my dx I would wake up in the night with the most horrible cramping and tightness it would make me cry, it seems like the first signs for me were the cramping muscle spasms and tightness. I now take zanaflex 4 mg for the muscle spasms. Delta, what meds are you on that you think you are maxed out? and I didnt see any mention of nerve blocks have you had any?? do you just have a PT or are you in pain management? what kind of doctor is overseeing your RSD? sorry for all the questions just tryin to understand better.
    Kelly

     
    Old 05-26-2011, 07:48 AM   #6
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    Re: RSD spreading or eat more bananas?

    The nuero doc has me on 300 mg of topamax which he hesitated to go that far. worried about kidney stones. I've pushed for every increase along the way. PM doc rx's every thing else. nucynta for pain. Klonapin for muscle spasms in the foot. Trazadone for the jumpiness at night. Phenegren to go w/ the Nucynta. My reg MD rx'd Pristiq for depression when this started and Vit D w/out calcium when we got the bone scan results just as extra boost against the osteo results. The topamax is the only thing that has helped to relieve any of my symptoms so far. Any advice?

     
    Old 05-26-2011, 09:24 AM   #7
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    Re: RSD spreading or eat more bananas?

    Ok so you are maxed out on topomax, try switching meds ask about lyrica or neurotin, I use a catapress patch i change weekly, this is clonidine and noramally used to control blood pressure, but also used for nerve pain with RSD. this works wonders, for me anyways.
    Lyrica and neurotin are also for nerve pain, I started with lyrica but couldnt tolerate the side affects and am now a on neurotin 300 mgs 3xs aday. Everyone is different some cant tolerate neurotin and use lyrica. Let me just list the meds I take, ok here we go.
    Neurotin 300 mgs 3xs aday
    Percocet 7.5/325 mg 3xs a day
    oxycodone hcl 15mgs only as needed (just during bad flares, up to 4xs a day)
    my catapress patch 3
    restoril 15 mg at night (sleeping pill)
    zanaflex 4 mg 3xs a day
    a ketamine compound cream applied 4xs a day to my back (this cream is amazing it loosens the tightness and numbs the site)
    prednisone eye drops 1 drop every hour
    cyclogyl eye drop 2xs a day (this dialates my eyes because they dont dialate on their own anymore)
    I also have a spinal cord stimulator implanted.
    Sometimes your body builds an immune to your meds and you need to switch, after a while you can always switch back to see if it helps again.
    I prefer to switch meds instead of going to higher doses so I dont max out. RSD is for life I dont want to take to many strong meds too soon you gotta plan your pain care for life and think ahead always hope for the best but unfortunately with RSD expect the worst.
    I was also on elavil, its an anti depresant but also used for pain and to help sleep.
    I can not tolerate the antidepresents I have tried several, so I take the restoril and have no side affects from it. The topomax I used to take for migraines pre RSD. My 14 year old son has tourettes syndrome and was prescribed topomax for that. I know RSD and tourettes are completely different, but my sons doc told me that topomax when it works, it works wonders but it seems to have a time span for people who use it and after awhile becomes ineffective. after a year it no longer worked for my son. I hope this helps with RSD you just have to keep mixing and matching until you find something that works,for the time being, and when it quits working back to the drawing board, mixing and matching.
    hope I am not confusing you. lol
    Kelly

     
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    Old 05-26-2011, 12:57 PM   #8
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    Re: RSD spreading or eat more bananas?

    The first med they tried me on was neurotin. Baby, baby dose. Had me ultra hyper bouncing off the walls. Then the first Neurologist switched me to Topamax. Work Comp refused his plan, so off I was switched me to a second neurologist. He switched me to lyrica. All my sensitivities returned more day by day. After three days, I went back to the Topamax. Once the pain management doc gets his dication to the nuerologist, I'll be seeing him in the next week or so. I guess I'll see what he says. Is there anything the PT people can do? Is there anything anyone can do?

     
    Old 05-28-2011, 01:57 PM   #9
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    Re: RSD spreading or eat more bananas?

    I would be very careful with PT and make sure your PT is very knowledgable about RSD.
    PT can be very helpful when done right or can be very harmful when to aggresive.
    I would ask about the catapress patch, its not a narcotic, but is very helpful with the RSD,
    for me, I use it now for the RSD in my right arm hand, so now I wear it on my upper right arm. When I was using it for my left foot /leg I wore it on my left hip. It seems to help better when placed on the affected side dont know why but does.
    kelly

     
    Old 05-28-2011, 10:35 PM   #10
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    Re: RSD spreading or eat more bananas?

    I wish you all well as well. Mine is workers comp. I'v
    e done everything i have been told to do. Meds, Thank God i have good PT. Now they are starting to balk. Dr. wants a spinal block, they won't aprrove it. Can I scream, yell, hollor at this point. I know the only ones who care are those of us dealing with this.

    Last edited by knave; 05-28-2011 at 10:37 PM.

     
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    Old 05-31-2011, 07:05 AM   #11
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    Re: RSD spreading or eat more bananas?

    Thanks so much for the suggestion! I will definetly ask about itl Any help at this point is better than nothing. Thanks so much again for everything. You ar great as always.

     
    Old 05-31-2011, 07:16 AM   #12
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    Re: RSD spreading or eat more bananas?

    Knave I know what you mean. At one point I actually said to my work comp adjustor that I understood that my walking again was not her priority but it was mine. My hardest thing to understand is that here in TN once you've had x number of PT sessions, the WC adjustor can no longer approve any more. It has to go to an independent agency for approval. This can take days to weeks. So while I may get 12 sessions ordered, routinely I only get 6 approved, run out of those, get the next 6 approved, go for another appointment, get another order for 12 more and then maybe or maybe not get approval right away. It has taken up to 2 weeks to get approval before since the company is in Kentucky and I'm not sure how the process works on getting me on their radar. But I know that me running out of PT sessions is not a good idea. And in TN you get assigned a Case Manager who is supposed to coordinate your care for you. I nicknamed mine "useless". She is a nurse but everytime I've called her re: any questions she never knows anything. She obviously knows nothing about RSD. I've been told to hire an attny, but... I don't know if that really helps. Life seems complicated enough.

     
    Old 05-31-2011, 10:16 AM   #13
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    Re: RSD spreading or eat more bananas?

    Sorry to hear about what your dealing with. Maybe your PT can give you home equipment and exercises to do on your off times. Hopefully you have someone who can help you at home. Cutting you short here, still not so hot this morning. Got some ginger ale and chx broth/crackers. Hopefully I can hold them down today. : (

     
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