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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Recently diagnosed with CRPS

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    Old 03-26-2008, 07:32 PM   #1
    Allison1125
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    Recently diagnosed with CRPS

    Hi everyone. I was diagnosed with CRPS in early February following surgery on my foot in late December. I am currently taking 400mg of neurontin 3 times a day & 50mg of pamelor once a day. I have not done too much research on the condition but following my 1st appointment today with a pain management doctor & a few visits to some RSD/CRPS websites tonight, I am starting to freak out a bit.

    The doctor told me that it can spread to other extremities which I read in the past. He said that something as insignificant as getting blood drawn could be a "trauma" that would cause it to spread to your hand. He recommended that I start a series of nerve bocks next week (1 a week for 5 weeks). I am afraid to even go in for any procedure now, especially this which includes an IV and a needle in my back! And I read tonight that it spreads in 70-80% of the people with this condition. Is this true??

    I keep reading that this is something that stays with you for life. If that is the case, is it worth it to try the nerve block? If it doesnt go away, then what is the point of the procedure in the 1st place? They say that people in the early stage (which is me) respond better to this kind of therapy, but what does that mean? Is it possible to get rid of this?

    I'd really appreciate any help you could offer. Thanks for listening!

    -Allison

     
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    Old 03-26-2008, 08:44 PM   #2
    Gaollan
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    Re: Recently diagnosed with CRPS

    Quote:
    Hi everyone. I was diagnosed with CRPS in early February following surgery on my foot in late December. I am currently taking 400mg of neurontin 3 times a day & 50mg of pamelor once a day. I have not done too much research on the condition but following my 1st appointment today with a pain management doctor & a few visits to some RSD/CRPS websites tonight, I am starting to freak out a bit.

    The doctor told me that it can spread to other extremities which I read in the past. He said that something as insignificant as getting blood drawn could be a "trauma" that would cause it to spread to your hand. He recommended that I start a series of nerve bocks next week (1 a week for 5 weeks). I am afraid to even go in for any procedure now, especially this which includes an IV and a needle in my back! And I read tonight that it spreads in 70-80% of the people with this condition. Is this true??
    Yes it does spread in 70-80% of people who get RSD. Being diagosed so fast means there is a great chance of getting it into remission. I'll go into that in a minute.

    Getting nerve blocks, especially a series of them this early is the best thing you can do! The blocks don't hurt, it's the least invasive of any procedure and it is standard procedure when someone is diagnosed with RSD. Most of the time, it's the 1st thing that happens in the newly diagnosed.

    A lumbar block doesn't hurt. If the doc does it like 99% of the other docs, you will go have an iv started in your hand or arm, then you'll receive meds, the main one being versed which will relax you. Then, right before the block happens, in my case anyway, the doc gave me a shot of something that put me out for a short time. When I woke up I was in recovery.

    The block should be done under flouroscopy or live x-ray. This enables the doc to put the block exactly where it belongs.

    The office should have given you instructions on what to do or rather not to do before the block. That includes having someone drive you there and home as you will be unable to drive yourself and it won't be done if you can't find someone to take you to get the block. Someone should also be with you at home for the rest of the day as your leg will be numb. You may experience a bit of soreness in your back the next day but not pain.

    You should keep track of how long the pain relief, if any, you get from this block. With each block the time should hopefully get longer.

    Quote:
    I keep reading that this is something that stays with you for life. If that is the case, is it worth it to try the nerve block? If it doesnt go away, then what is the point of the procedure in the 1st place? They say that people in the early stage (which is me) respond better to this kind of therapy, but what does that mean? Is it possible to get rid of this?

    I'd really appreciate any help you could offer. Thanks for listening!

    -Allison
    Yes, RSD is for life. There is no cure but there is remission. Remission is a complete lack of any pain or symptoms of RSD. Being diagnosed within the first 3 months is the best hope of getting it into remission. There are so many of us who get diagnosed too late for anything to help and others get diagnosed early but due to insurance companies, most work comp, medical care is delayed until it's too late.

    As I said above, the nerve block is your biggest and best hope of getting it into remission before it does permanent damage to nerves and before the pain goes independent. When that happens no amount of nerve blocks will help.

    It is all worth it to get remission. The main thing to keep in mind is from this point on you should be careful of getting injured again which can spread it. If you are in remission it could cause it to come back. Don't be afraid to live, never that, just be mindful is all.

    You will never be "cured" of RSD but you will hopefully be one of the lucky ones who gets remission. I hope with all my heart and soul that such quick action by your doc with meds and blocks gives that to you so that you can continue to live life without meds and pain all the time. RSD isn't the end of everything just a new beginning and a new way of life. Not one we ever envisioned for ourselves but it doesn't have to be all doom and gloom either.

    Hope I've helped you with all this explanation. Don't be afraid to ask anything more. I will do my best to give you answers.

    Hugs,

    Karen

     
    Old 03-27-2008, 06:18 AM   #3
    Michelle94
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    Re: Recently diagnosed with CRPS

    Welcome to the boards..
    One of the first things my RSD specialist said to me is " Do not go on the internet and compare" Each and everyone of us are different..
    When I was first dx, I did the same thing.. REad up on it.. looked at all the nasty pics.. I use to cry and say my life is over.. Now that I look back.. at 7 yrs. . I may never be like those pics.. So please do not compare yourself..
    Galloen is right.. The blocks can be very helpful for you.. It will also help the drs determine if you have sympathetically maintained pain or sympathetically independent pain.. this will help determine your course of treatment...
    I am taking Neurontin also. Hows it working for you? Did you just start it.. It took me over 3 months before it starting working for me, so hang in there..
    The most important thing is taking one day at a time.. Don't let yourself get into this hole where you think you will be in a wheel chair etc.. cause it may never happen.. The positive is.. you were dx very early.. You have a great chance of remission..
    Think positive,
    Michelle

     
    Old 03-27-2008, 08:18 AM   #4
    jodom1979
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    Re: Recently diagnosed with CRPS

    Hey Allison,

    When first getting Dx'd with this crap I freaked after reading about it on the 'net. I am comming up on my 2 year mark with it and believe me its not the end ofthe world. My PM doc jumped right on it and with blocks, medications I live a fairly normal life. I may never run a road race.. But I can walk. Like michelle said everyone is different. Once I got the medication cocktail dialed in things have been awsome. I think the strongest medicine you can have for this disease is the will to beat it. No matter how bad things go always look for a silver liining. Good luck and keep us posted.

    Jon

     
    Old 03-27-2008, 04:12 PM   #5
    sharon1030
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    Smile Re: Recently diagnosed with CRPS

    Hi Allison,

    I just wanted to say "hi" and welcome you to the board. Karen, Michelle and Jon have given you good advice so I have nothing to add except "hi."

    Sharon

     
    Old 03-27-2008, 06:10 PM   #6
    Allison1125
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    Re: Recently diagnosed with CRPS

    Karen, Michelle, Jon & Sharon - thank you so much for responding. Its so nice to have people who understand what I am going through when no one else I know has any idea what I am talking about! And the fact that you are all so positive about it makes me feel a lot better. You are all angels! I saw some of the pictures last night that Michelle had mentioned and I freaked out a little bit. You all have definitely calmed me down.

    I have been taking neurontin & pamelor since I was diagnosed on February 6th. I havent really noticed much of a difference. Its so hard to remember day to day so I think I may start keeping a pain diary or something. I am getting around much better since I started the medication but I am also in physical therapy 3 times a week & I finally got out of the stupid surgical shoe & I can ease my foot into a sneaker (2 sizes too big) without much pain. The sneaker is much easier to walk in. I have good days & bad ones - today being one of those bad days. I feel that a few days after my neurologist increases the dosage on my pills I have a couple of really good days & then it goes downhill again.

    I have my 1st nerve block scheduled for Tuesday and I am pretty nervous. But after reading all the websites & all of your responses I think its probably best not to put it off & just go for it. My main concern other than the procedure going terribly wrong is the risk of this spreading.

    So once again, thank you all. It is so comforting to hear from people who have been through the same thing.

    -Allison

     
    Old 03-27-2008, 06:16 PM   #7
    jodom1979
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    Re: Recently diagnosed with CRPS

    Hey allison,

    the blocks "Aint nothing but a chicken wing". I myself loved the after affects of each one and hopefully you do too. The block seems really intimadating but its not so bad and usually they give you soemthing to mellow you out just a tad

    Jon

     
    Old 03-27-2008, 06:26 PM   #8
    Gaollan
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    Re: Recently diagnosed with CRPS

    You're so welcome Allison! The things one can find online about RSD can be uber scary for sure!

    The risk of spreading from a block is about nil. In the 5 years since I've had RSD I've never heard of anyone experiencing spread from getting a block done. So, don't worry about that at all. A block isn't invasive like surgery so no fear of spreading. I know the fear of even getting a block. I was scared spitless to have one done. Work comp delayed my getting 1 until it was far too late anyway, but at that point they forced me to get it. The actual procedure wasn't the least bit scary and as I mentioned before, there's really nothing to it. As long as the doc is competent and does it right then I wouldn't worry about any catastrophes happening. *hugs* It sounds as if your doc is very competent and will do a bang up job, hopefully leaving you feeling no pain!! In that case you'll actually look forward to the next block! LOL

    There are good and bad days with RSD. I like to think of it as more like a roller coaster though with all the ups and downs we go through both physically and emotionally. It's awesome that you put on a regular shoe today!!! *claps wildly!* No matter the size the fact you did it shows good progress. Keep as positive an attitude as possible, it does make all the difference and we'll be right here to prop you up if being "up" is too much that day. Keep thinking that the blocks you'll be getting will get you into remission and pain free! I'll be sending my good vibey energy for it your way! I know vibey isn't a word but I like making up my own words. LOL

    Hugs,

    Karen

     
    Old 03-28-2008, 04:56 AM   #9
    Michelle94
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    Re: Recently diagnosed with CRPS

    Allison,
    When I first started the neurontin , I felt the same way.. I didn't think it was doing anything.. Its most used for the shooting pain and burning.. It will take time for them to find the right dose for you.. You've only been taking it about what 2 months.. Give it more time..
    If I forget to take one before bed time.. I wake all through the nite in pain.. This is when it really shows how much it does work for me...
    Are you getting tired with it.? When I first started it.. I also started with Lamictal. I was out cold... I didn't eat.. All I did was sleep.. I felt drunk all the time... In about 3 months.. all the symtoms went away. ..
    So hang in there.. I think you have a great chance of beating this to remission.. Don't be surprised if you have some discomfort after the block.. Not right away but.. Hrs later..
    Good luck...
    Michelle

     
    Old 04-01-2008, 05:47 PM   #10
    Allison1125
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    Re: Recently diagnosed with CRPS

    Hi everyone! I had my first block today. You all were right! It wasn't bad at all. I had them put me out completely because I wanted no part in knowing what was going on.

    At first I felt pretty good. My foot wasn't bothering me at all. About an hour & a half later I started to get an aching pain in my foot as well as my thigh (the ache in my thigh only lasted a little while). The "hot" feeling in my leg went away after about 4 hours. And I had no color change in my foot. I read that the color usually goes back to normal after the procedure but I don't know if thats the norm. I don't have any pain in my back yet but its only been about 12 hours. And I slept pretty much all day! I guess thats from the anesthesia.

    I know that the effects of the block are supposed to stay longer each time. I'm just wondering if my experience sounds ok for a first timer. I was hoping I'd be feeling good a little longer. I go back next Tuesday for round 2!

     
    Old 04-04-2008, 05:29 AM   #11
    Michelle94
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    Re: Recently diagnosed with CRPS

    Allison,
    Sounds like your responding to the block.. Thats a good sign.. It really lets the dr know what direction of treatment to go with..
    When I had my blocks it was 4 yrs into the RSD.. I had no results at all.. My first, there was no change at all.. My second I ended up in the ER the next morning.. At this time I wasn't being treated for RSD. I was being treated for herniations of the cervical.. They do the same blocks sometimes for that.. Anyway.. My necked swelled up so bad I couldn't turn my head, I had a hard time swallowing.. It was rough.. lol lol...
    Now, 3 yrs looking back.. It was all the RSD.. apparently the blocks must have flared up the RSD..
    So, to me it sounds like your going in the right direction.. What do i know, I am not doc.. but I really do hope it works for you..
    Michelle

     
    Old 04-10-2008, 07:01 PM   #12
    Allison1125
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    Re: Recently diagnosed with CRPS

    Thanks Michelle! Sounds like you had a really rough time! Well, I went for my second block on Tuesday. This time I had relief for 3 & 1/2 hours so I guess I'm going in the right direction. I was hoping it would last longer. I wonder how many blocks it takes to really make a difference. Its so depressing when the pain comes back. I get a little slice of heaven but I cant even enjoy it because I'm so tired from the anesthesia...so unfair!! Let me know if any of you have had similar results. Also, is it ok to skip a week? I could not get an appointment for this coming Tuesday so I wont be going until the following week. I'm worried that a 2 week break might be bad.

    -Allison

     
    Old 04-11-2008, 06:36 AM   #13
    jodom1979
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    Re: Recently diagnosed with CRPS

    Hey Allison,

    Isnt it nice to get a little slice of heaven with each block?? I dont know if they would work for me now even on an emergancy basis. I memmory serves me they did end up working a little longer each time as we progressed through the series. I do remember after getting them ally and myself would go out to eat and do some shopping. It was soooo nice feeling normal if even for a short while! I guess you can tell I really look fondly of those little guys. LOL I wish there was a way for them to just implant a catheter right on the nerve to dump the numbing agent they use. Unfortunately there isnt a way to secure one in the region so we are outta luck.(asked my PM) But if there was a way I would not need anything but that put in me I swear! Keep us posted on how you do with the blocks!!

    Jon

     
    Old 04-12-2008, 05:13 PM   #14
    Michelle94
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    Re: Recently diagnosed with CRPS

    Allison,
    You hang in there.. The fact that your getting some relief from these blocks is good news.. 3 1/2 hrs of relief is like a life time for someone with RSD.. You go girl.. Just take one day at a time. Try not to think ahead.. It will only make you go nuts....
    Michelle

     
    Old 04-13-2008, 05:21 AM   #15
    Michelle94
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    Re: Recently diagnosed with CRPS

    Allison,
    I was reading up last night on the internet, I came across an article about of course RSD and the reasons why they give these blocks..
    The reason why they give the blocks is to reduce the inflammation and take away the inflammatory chemicals that begin the whole process of RSD.
    Our sympathetic nervous system is trying to heal by releasing white cells and helping the injured nerve regenerate with new nerve sprouts. The intense and chronic pain that we have causes chemical reactions that change the nature of the sympathetic nervous system. So by getting the block they are trying to change that chemical reactions.. block it before it becomes chronic.. This is why its helps people who were just DX with RSD.. AFter it becomes chronic our new nerve sprouts learn to become more sensitized and cannot be reversed or blocked.. Basically what it does is the chronic pain turns on the production of new genes in the cells which is how RSD becomes and irreversible disease. And what they are trying to do is stop the process and keep the damaging calcium out of the neurons.
    It sounds confusing. I tried to break it down some.. But it makes so much sense.. You read all the time on here that the blocks only help people with RSD if they were just dx.. I never knew why...
    This site I was reading was so interesting.. It explained why we have edema, movement disorder, autonatic syfunction. (why we have burning, discoloration, and why it becomes cool and pal in later stages).
    Michelle

    Last edited by moderator2; 04-13-2008 at 06:31 AM. Reason: do not direct searches - we consisder it to be the same as if you posted the disallowed website

     
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