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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • does anybody have joint pain

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    Old 08-24-2003, 08:07 PM   #1
    timmy k
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    Unhappy does anybody have joint pain

    hi everybody again. just a recap. was in a mva 11/02. herniated disc in back and neck as a result. rsd like symptoms developed in 01/03 in right hand then over to the left hand in 03/03. one doctor diagnosed rsd in 05/03. bout 4 other doctors said it looked like rsd but no one has acted on it. any nerve blocks were cancelled. i am seeing a pain management doctor that says i have a lot of autonomic symptoms going on but dont think it is rsd. i am in physical therapy now and they said it looks like herniated disc problems with rsd because the symptoms i have are not typical of just herniated disc. (now is that possible to have herniated disc problems with rsd?)they said it is. they sugested i see another doctor. anyway i have some symptoms that seem to be getting worse and was wondering if anyone else have them...they are...severe joint pain too with the other pain! i mean my shoulder joint hurts so much now i can hardly move it at times! the joints in my fingers ache also. all this is on both shoulders and hands. right side is worse. the other thing is this..i will be doing something then all of sudden... i just cant seem to move!! i mean i just hurt all over..everywhere! the best way to describe it is when you get the flu and you have that severe all body ache where you cant move and you have to just go to bed!! i can be doing something then boom i am done!! these types of symptoms seem to be getting worse.. does anybody have these symptoms too?? i am working up to 1800mg of neurontin daily and 25mg of zanaflex and also a tens unit and 500mg of vicodin when needed..all this helps some but still always in pain..another thing is this>>>>PAIN .. how do you get people who do not have pain to understand pain? ..i mean its like this..some people have told me..(whats wrong with you? why u loafing? why cant u do this today? u did it yesterday. it seems you should be doing something..) i have even heard people say behind my back things like (he is going to the extreme with this problem of his. or other people have the same problem he does *ie* herniated disc problems and they are back to normal in just 3 months.) i even heard someone say behind my back that there is nothing wrong with him. he is just doing a show. THINGS LIKE THAT.. now these are not doctors that say those things... its other people i know that have no pain. it really depresses me..i used to be a work horse at work before 11/02 and now i have no job and cant hardly do simple things. i dont like it that i am in pain all the time..i dont like it that i can do something one day or even an hour ago and then i cant do it.. i dont like it that i can be doing something then all of a sudden i ache so bad and so fatigued and have no energy to do anything.. HOW do you get people to understand what i am going through too...SO SORRY FOR VENTING. i know that everyone on this boards understands but incase you dont..SORRY and thankyou for reading and thankyou for any comments..timmy**
    ps...i forgot...does anybody have problems with memory? i do and sometimes bad.. sometimes i cant remember why i even went to the store or cant remember the doctor's name when i am in the doctors office..i feel stupid. i have checked the web and with other medical people if the medications i am on might do that..and they seem to think its not the medications....its not my really isnt..
    [This message has been edited by timmy k (edited 08-24-2003).]

    [This message has been edited by timmy k (edited 08-24-2003).]

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    Old 08-24-2003, 08:43 PM   #2
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    Hi Timmy,

    No need to apologize for venting. Everyone needs to do it once in a while. As for your question about herniations and RSD...yes, it's possible to have anything plus RSD. Your other concern about what other people are saying behind your back is a little harder to address. First, they should realize that you went from, as you describe it, "a work horse" to being able to do less. Do they think you just changed for no reason? Usually, people who work hard don't just become less active because they feel like it.

    I don't know what to tell you about other people. My philosophy has always been that I can only control myself. I can't change what other people think of me. If you really feel like it, you could tell them you have RSD and give them a simple definition of it. My experience with people like this is that they don't want to hear it. They don't want to hear there's a reason for why you can't work as much as you used to. They want to gripe about someone else so they can feel better about themselves.

    Sorry I don't have more answers, but you can definitely have a herniation when you have RSD. This I know for sure.


    Old 08-25-2003, 07:21 PM   #3
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    I know what you mean about just collapsing. That's the main reason I am in a wheelchair now. Since my accident, I manage to lose the feeling in at least one leg with no warning. Not to mention the sharp shooting pains from mid-back to my toes. The docs have run tests and told me that my back is fine. Yet it hurts worse than ever.

    I have the shoddy memory. I'll go to the store with my list of what I need...get there and realize I don't know what I need......get home and find my list that I didn't even remember making! I have to write EVERYTHING down or its hopeless for me. I know how you feel when you're sitting in the doctor's office (the same one I've had for 2 years) and cannot remember his name. Its really scary.

    I get the achy body too. Joints sometimes feel like they have shaved glass in them. Its all I can do to make to the bathroom sometimes. I even bought a little drawer cabinet I keep by the couch for drinks and snacks so I can take meds in the middle of the night if I'm hurting too bad to get up. Tried the crawling thing and its even worse trying to get up.

    Why is it so hard to get people to understand that we are in excruciating pain more often than not?

    You hang in there. Don't let them get you down. Find that special place in you that keeps you going, remember that one day you got up and it didn't hurt so bad to get out of bed, and hang on to that feeling. Don't ever let the light inside you go out. You are too precious, and you have too much grit to give up or you wouldn't have made it this far.

    Hang in there...

    [This message has been edited by Nakona (edited 08-25-2003).]
    Life is not measured by the number of breaths we take, but by the moments that take our breath away. ---Unknown

    Old 08-28-2003, 05:44 PM   #4
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    Hi Timmy,

    I also get real bad joint pain.

    when I was at work one day I heard someone say that I could do more then I was doing and I am probaly as not bad off as I say I am. People can be so ignorant, They do not understand what RSD can do to a person physically and mentally. If only they had a clue.

    Memory loss is a part of RSD.You are definetly not alone.

    I hope you can start feeling better soon.

    Take care

    Old 08-28-2003, 09:20 PM   #5
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    Hi all,
    Boy you all sound like me memory loss,joint pain and everything else that comes with this monster.I think my family think I'm going crazy I can't even go to the bathroom with out help and just to move my hand to take a drink just kills me so and I feel so wore out all the time and I don't even do anything,it drives me nutts.If I don't remember to write everything down I will not remember it,but most of the time I can't remember writing any thing down or where i put it if I boy we are just a mess,glad you all understand.nice to hear I'm not alone in this but feel bad that there are so many of us out there with this.

    Old 08-29-2003, 01:59 AM   #6
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    Yea, I'm coming out of real bad joint pain and stiffness. Funny you should mention the shoulder that won't let the arm go back! I'd put my arm back then my shoulder would like seize and contract. It wasn't just the joint but the whole upper arm and shoulder. Gad that hurt! Also couldn't straighten my legs any more.

    Getting much better now, so thought I'd pipe in.

    For me it was the vitamins. We all react differently to what we take in. Your body could definitely be reacting to one or more meds.

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