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  • pain getting worse, nerve blocks?

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    Old 06-17-2011, 09:28 AM   #1
    wendyk33
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    pain getting worse, nerve blocks?

    Hi all. I have crps in my left leg. I have had it for almost 18 months and i find it is getting so much worse! I did the initial injury at work and am on a disability from work so am dealing with case workers not believing me. I had an mri 2 months ago and it showed that my leg, swelling and intermuscular fluid, is worse than it was a year ago, right after I tore my calf muscle. Well, yesterday I had to go for another MRI because my case worker actually said that there is nothing wrong with me and that my mri doesnt make sense to her. Wow, so disgusted with all this! I have seen 7 drs and all but one said i have rsd. My leg used to turn purple/red when i sit but now the entire back of my leg is mottled purple. Does anyone know if this will go away? Also, the pain is getting so much worse! If I take my pain meds and dont move off my chair I can usually stand the pain but who can do that??
    The dr had me on the wait list for the pain clinic for nerve blocks. Do these work and how well? I keep going to drs hoping they will cure me and always leave in tears when they cant. Do nerve blocks take the pain right away? That would be so awesome! Any info would be appriciated!

     
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    Old 06-17-2011, 10:08 AM   #2
    kelly4004
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    Re: pain getting worse, nerve blocks?

    Hi wendy, I also have RSD, I have had it for 2 years now, the color changes pretty much stay with you it may not be discolored 24/7, you may find when its cold, when your in the shower, or hanging your leg down, or over using your leg will cause the discoloration, sometimes it will turn for no reason. The nerve blocks if they help you (they dont always help everyone with RSD) could give you relief of your pain maybee for a few hours or maybee a few days and if your one of the lucky ones maybe a few weeks. RSD is different for everyone, and the treatments also affect all of us differently. Are you getting a lumbar sympathetic nerve block? I am sorry you are having to deal with WC my injury was not work related I have read alot of horror stories from people with RSD trying to get treatment through workers comp. As for a cure I am sorry to say there isnt one, best hope is for a remission, which basically means the symptoms go to sleep for a while but can wake up at anytime. Stay away from ice dont use it for swelling, it can make RSD worse or cause it to spread. also try to stay away from surgeries or any kind of shots or nerve blocks in your RSD area. Unfortunately with RSD there is no blood test that will show RSD no xray or mri that can see RSD they pretty much do all these tests to rule out anything else that could be causing your pain. Mostly docs go by what they see and what you tell them, they see the color change and swelling, the hair growth or lack of, some docs use sympathetic nerve blocks as a diagnostic tool If the block works then it has to be RSD, but on the other hand the blocks dont always work for everyone who has RSD. Its a great big aggrivating puzzle.
    I hope your block works for you so you can get some relief from your pain.
    kelly

     
    Old 06-17-2011, 10:51 AM   #3
    wendyk33
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    Re: pain getting worse, nerve blocks?

    Thanks for the reply! I did realize to stay away from ice early on, very painful! I have my chair by the wood stove in the living room and have my leg on heat a lot of the time. I find the heat good but also painful, sort of a hurts so good type of thing!
    I have drs trying to help me but I have WC resisting the diagnosis because it doesn't make their lives easier. But, they also have access to drs and treatments quicker than I can get them on my own. I guess if I have to deal with them I may as well use it to my advantage, right? Also, I can't work now, I'm an LPN so my work is very heavy. They r trying to get me to take a desk job and they dont listen when I tell them that one of my most painful times is sitting. I'm not sure if that's usual but that's the way it is.

    I have pondered getting an amputation of my leg. Have u heard if that would work? I know it seems severe but if I could be pain free... Oh well, it would be worth it.

    Thanks for the reply!

    Wendy

     
    Old 06-17-2011, 11:10 AM   #4
    kelly4004
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    Re: pain getting worse, nerve blocks?

    Hi Wendy, No amputation will not help. When I first found out what I have, I asked my doc about amputation. He told me that many years ago they used to do this for people with RSD, only to find out that you still have the pain just as if you still had your leg. Also it causes the RSD to spread rapidly. Try the sympathetic nerve blocks. I understand about the sitting does it feel like your leg is gonna explode when you sit too long? mine did.
    I used to have to stand on my feet 10 hours a day for my job, I have RSD in my left foot. which spread up my leg to my hip, then spread to my left hand and arm (my left arm and hand is now in remission) then my RSD spread to my right hand and arm after a vein was busted in right hand while a nurse was giving me an IV, then it spread to my lower back and buttocks from surgery to have my spinal cord stimulator implanted, and finally has spread to both of my eyes, all in a 2 year period. I had to apply for SSDI in february of this year and just yesterday I got a phone call from SSD telling me my case was approved, it only took me 4 months. I am sorry to say this but if I were you I would start the paper work now for SSD just in case. You can apply for SSD even if you are on workers comp.
    Kelly

     
    Old 06-17-2011, 11:37 AM   #5
    wendyk33
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    Re: pain getting worse, nerve blocks?

    Wow, I am so glad to hear of someone having thensame thing as I do! Well, I am so sorry that u have red and to the extent that u do. I am thankful that I only have it in my leg, up to my hip. My original injury was a calf muscle tear that started to get better then started to get worse for no reason. When my leg and foot started to change color when I sat I thought I had a blood clot and went to the dr but it wasn't. Yes, my leg feels like it is going to explode when I sit. I will sit and at first I can handle about 10 min or so before the pain gets too bad and I have to get up. If I sit right back down it is for a much shorter time before I have to get up again. After a few times the pain is so bad it feels like my leg is on fire, ready to explode and if I can't get out of there, like at an appt or something, I will have a panic attack due to pain. It feels like as the pain increases it starts to affect my brain and thinking.
    Sorry for taking up so much of ur time, I just have no one to talk to about this and it is so debilitating. Before red I worked as a nurse, was a karate teacher, was thin and very active. Now, well, let's just say I'm none of those things. I am thankful that I have a wonderful, supportive husband and family.

    Wendy

     
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    Old 06-17-2011, 11:54 AM   #6
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    Re: pain getting worse, nerve blocks?

    AHH the RSD lives in your sympathetic nervous system, which controls your fight or flight response (panic attacks) also sleep patterns and your moods along with many other things, so the anxiety comes with RSD and not only do you have pain keeping you awake or waking you from sleep the RSD is also muddling around with your sleep patterns.
    kelly

     
    Old 06-17-2011, 03:51 PM   #7
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    Re: pain getting worse, nerve blocks?

    Wendy,
    I also have RSD in my left leg, then moved to my left arm although it has gotten better there, just sensitivity and a little burning there.... I am also a karate instructor!

    The key is to keep moving. You need to fight to try and get one of the sympathetic nerve blocks and see if they work and then you may need to keep getting them. I've had probably 20 of them in the past 6.5 mos. But also key, and this is a danged if you do, danged if you don't type thing, is to keep moving. Movement equals pain, but not moving equals more pain. I get on the stationary bike 3 times a week. It is non-weight bearing. I hated it at first. I complained to my PT. I started at level 2 and could hardly do it at all. He said if you can only do 2 min do 2 min, then work up. I can now do a half hour on level 6. Yes, my leg is worse right after, BUT the week I took off because my son had football camp I had to be at my leg was at its worst. I was in so much pain. Now was it all because of that, I don't know, but I do believe we have to keep it moving.

    Amputation is not good. I have a destroyed ankle joint. I was thinking amputation before the RSD because of the ankle. Remember, with a NON RSD limb, I was thinking amputation. After much research, I realized that with amputation, I would probably not be able to wear a prosthesis and then what. I would not be able to walk and what would that accomplish? SO yes, I still have the bad joint and will be getting a joint replacement instead. Still risky yes, but less risky perhaps for the rsd and will still give me the chance to walk. Don't amputate. I read somewhere that it is a slow painful suicide for rsd people.

     
    Old 06-17-2011, 04:24 PM   #8
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    Re: pain getting worse, nerve blocks?

    Quote:
    Originally Posted by kellyevans40 View Post
    No amputation will not help. When I first found out what I have, I asked my doc about amputation. He told me that many years ago they used to do this for people with RSD, only to find out that you still have the pain just as if you still had your leg.
    Also referred to as 'phantom pain.' It happens to a lot of people who have neurological pain, because even if the limb(s) in question are gone, the nervous system is completely out of whack and misfiring all the signals (which causes the pain in the first place), which leads the individual to feel as though they're still in pain even if that particular limb has been removed.

    As for the original post, I've had RSD for twelve years now and have had a lot of experience with nerve blocks. Some were helpful and some weren't, but that likely goes for everyone. If it's your entire leg that's in pain, it may be suitable to think about a lumbar sympathetic block. Because the injection is in the lumbar spine, it generally numbs your entire lower body. After the numbness subsides, you should have an idea of whether or not it has had any sort of effect on your pain.

     
    Old 06-17-2011, 06:00 PM   #9
    wendyk33
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    Re: pain getting worse, nerve blocks?

    [QUOTE=K_Lana;4780370]Wendy,
    I also have RSD in my left leg, then moved to my left arm although it has gotten better there, just sensitivity and a little burning there.... I am also a karate instructor!

    Awesome that ur a karate instructor also! Can u still take part? I can't, too painful but i do go in once in a while to help a few of the new instructors tweak their katas/forms.

    I also have found that using my exercise bike on the lowest setting helps keep my leg from seizing up. I also try to use my weight machine but its funny how using ur arms can affect your leg. I get shots of pain up my leg whenever I lift the weights but i still do. Like u, after awhile u get used to it.

    from the sounds of things, I wont be going for an amputation. I never thought about no being able to wear a prostesis. that would be terrible, the pain and not being able to walk at all. At least now I can walk, even if it is with forearm crutches.

    xoliana, It involves my leg from my toes to my hip. I am not sure which nerve blocks i will have. I have to get in to the pain clinic first and they will do them. could be up to 2 years to get in. I am hoping for a cancellation. where do they usually put the nerve blocks? I am quite nervous but anything that will help, I am willing to try!

    Kelly, I really didnt make the connection between my rsd and the nervous system and the panic attacks or disrupted sleep patterns. I just assumed it was because I am losing it and due to pain! Thanks for filling me it. It really is embarrassing when I am out and have a panic attack. i feel like a trapped animal with no way out. All I want to do is run but u know how that is, they would sure catch me quickly!!

     
    Old 06-17-2011, 06:50 PM   #10
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    Re: pain getting worse, nerve blocks?

    [QUOTE=wendyk33;4780476]
    Quote:
    Originally Posted by K_Lana View Post
    xoliana, It involves my leg from my toes to my hip. I am not sure which nerve blocks i will have. I have to get in to the pain clinic first and they will do them. could be up to 2 years to get in. I am hoping for a cancellation. where do they usually put the nerve blocks? I am quite nervous but anything that will help, I am willing to try!
    The lumbar sympathetic block is a series of needles done in the lumbar spine, which is your lower back. There are so many different locations that nerve blocks can be performed, though. It depends on the medication being used and the area that's most affected by pain.

     
    Old 06-17-2011, 11:04 PM   #11
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    Re: pain getting worse, nerve blocks?

    Amputation may be a possibility. I found a number of US papers. 1 from a surgeon saying that by using full sympathetic nerve blocks for 48 hrs prior to amputation and 48 hrs after non of his patients had suffered phantom limb pain. 2nd compared RSd pain to Phantom limb pain with the limb still attached. 3rd from surgeon stated he had been these blocks prior to operating in RSD affected areas and no one had suffered a spread.
    See second surgeon 4th July and if he agrees they will use me as a guinea pig for the first time this has been tried in the UK

    Last edited by Kev629; 06-17-2011 at 11:04 PM.

     
    Old 06-18-2011, 04:54 AM   #12
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    Re: pain getting worse, nerve blocks?

    It was said that if the rsd isnt gone then it is impossible to wear an artifical limb. That would be very hard. But ur right, if it takes the pain away it would be good. Good luck on ur surgery and I hope everything works out for u.

     
    Old 06-18-2011, 04:59 AM   #13
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    Re: pain getting worse, nerve blocks?

    Wendy,
    Can I take part in Kata? Not really, but I do help teach although standing through class sometimes is a challenge. If I need to sit sometimes, I have to deligate and then sit. I do like keeping the forms in my head though and helping. I am very much a fine tune type girl and so I like picking apart parts of a form to tweak it just right. I guess that is the former competitor in me.

    I hope you can get the SNB soon.

    As for me, I go for the spinal cord stimulator trial on Wed. I'm getting really nervous!

     
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