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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • new to RSD need some info,please

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    Old 06-25-2008, 07:35 PM   #1
    kelly64
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    Question new to RSD need some info,please

    Hello
    I am new to RSD
    was in a car crash and had neck and back injurys, C4C5C6C7 H-disks
    and then with in a year my spine from top to botton had SS and Spon something, can not spell it,
    had pinch nerves in my neck,
    my Ins Co is playing a # on me like I am sure you all know!
    I know my hands started 1st ,,swellen and red, very painful
    then could not lift my arms, and all the numbing filling,
    then R foor Swelled up and toes curled under my foot so I was walking on my toes, by then I could not walk no more due to my back, I have a nice lean going on now, and my neck in push forword, my L arm is red and swellen up now and the pain is so bad, just a little movment it takes me over,
    I am up walking now, but my back and spine is burning so bad just to sit or drive, and walking makes it burn also,
    then it gose in to my neck and shorders,
    I just wanted to know what dose RSD feel like in your spine? and back and neck?
    my PM Dr when he seen my arm and my toes that are still culing up on me,
    they look like hooks now,
    and hair stop growing in some places,
    there is a lot more, but I am just asking what dose RSD feel like in your spine and back?
    it also feels like it is going to brake in half!
    and I can not stand to wear anything!
    sorry about my spelling it is not the best,,

    its only been 4 weeks knowing about RSD but it has been over 2 years
    and no one knew, or did not care to tell me,

    thank you
    KB
    PS
    if you can explan to me the oter things going on, that would be great!,,
    ty

     
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    Old 06-26-2008, 12:52 AM   #2
    Michelle94
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    Re: new to RSD need some info,please

    Kelly64,
    Wow... We both have almost the same situation going on.. I was also in a MVA back in 2001.. I herniated the same dics as you.. and from there I started with the hands burning and swelling and soon went to both feet.. They call this the mirror image RSD..
    For me I get a weird sensation going down my spine. Not all the time.. Its so hard to explain.. It starts in my neck and shoulders same thing.. Its almost like an anxiety running down my spine.. Weird I know.. I get a nasty flu like feeling along with the burning in my hands and feet.. at time My muscles feel like they have wasted away..
    With me having the cervical injury and the RSD.. after having it for 7 yrs I can tell when the pain is from the RSD and when its from the herniations..
    I think the burning in your neck and shoulder are probably from the herniation along with the numbness. I went to Physical therapy for almost 3 yrs.. That helped with the herniations..
    The hair loss is normal.. For me when I first started with RSD.. I actually had the opposite.. My hair, nails grew like weeds.. Then I started with the hair loss..
    I had the same problem with not being dx right away.. IT took them four yrs to figure out what was wrong with me.. I was treated for the herniation, neuropathy.
    How are you being treated at this time.. what meds are you on?
    Michelle

     
    Old 06-26-2008, 05:33 PM   #3
    kelly64
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    Re: new to RSD need some info,please


    sorry this is going to kind long

    WOW Michelle
    thank you for replying to me,
    so you got RSD from your H-disks also?
    How are you doing now? talk about wilded this happening to you the same way as me,

    I did not get the Dx of RSD till just 4 weeks ago, (I am so new to this)
    but I had things going on from the start, I started posting on here
    just about my H-Disks and was told by one Dr, that I would needsurgery on my neck
    but my Ins Co would not ok it,
    then I had spams so bad they thought I was having sezers, and so on

    But I kept telling everyone what I was feeling, and I never had H-disks before
    so I thought that was norm, but it was not, that is why no one would treat me, from the start, and then my Ins Co would do anything to stop me like not paying my bills and kept telling me that it was FM (I do have but that did not hurt as bad as this) and I kept telling my Ins Co this, I know what FM feels like, I been to Dr to Dr, but then my PM Dr here, when he seen my arm and seen my foor and toes, that is when he said you have RSD
    my arm is really red but also has red spots all over it,
    what is that? also at one time, if I would just take my hand and feel the R-Side of my neck, it felt like my skin was ripping open,

    that burning down my spine and neck, is the same burning I got in my RSD foot and hands, but its more intenst! now and my arm, its a crushing burning feeling, just if I move it a little, and WOW tears!
    this would wake me up, crying from it, I got to the point where I could not even get out of bed by myself, and when someone would help me out of bed
    OMG the pain!

    below is the list of things that happen from the crash,

    and I am not to have any pain from all this the IME Dr's
    he knew I was in pain, but not from a auto crash!

    the H-disks are all I had at frist, and TMJ, then the reat come on about a year later, with a new MRI, from what I understand, RSD can couse a lot of that also,


    C4-5 HERNIATED NUCLEUS PULPOSIS AT JUNCTION OF RIGHT ANTEROLATERAL RECESS AND RIGHT NEURAL FORAMEN;
    C4-5 NEURAL FORAMINAL NARROWING ON RIGHT SIDE AFFECTING VENTRAL C5 NERVE ROOT;
    C5-6 RIGHT SIDED DISC HERNIATION EFFACING THE VENTRAL ASPECT OF THE THECAL SAC ON RIGHT SIDE DISPLACING THE RIGHT SIDE OF THE SPINAL CORD POSTERIORLY;
    C5-6 NEURAL FORAMINAL NARROWING ON THE RIGHT;
    C5-6 SPINAL STENOSIS;
    C6-7 DISC HERNIATION RIGHT SIDED EXTENDING FROM POSTERIOR CENTRAL ASPECT OF DISC INTO RIGHT NEUROAL FORAMEN;
    C6-7 EFFACEMENT OF RIGHT SIDE OF THECAL SAC EFFECTING VENTRAL NERVE ROOT RIGHT C7;
    AGGRAVATION OF DEGENERATIVE CHANGES MANIFESTED BY DESICCATION AND NARROWING OF DIFFUSE NATURE THROUGHOUT CERVICAL SPINE;
    LINEAR HIGH SIGNAL ON T2;
    AGGRAVATION OF DEGENERATIVE CHANGES THORACIC SPINE;
    AGGRAVATION OF DEGENERATIVE CHANGES LUMBAR SPINE;
    LUMBOSACRAL TRANSITIONAL SEGMENT;
    ENDPLATE IRREGULARITIES LUMBAR SPINE;
    RIGHT MEDIAN NERVE NEUROPATHY RIGHT WRIST;
    CARPAL TUNNEL SYNDROME;
    NECK PAIN;
    PINCH NERVE C4/5 RIGHT
    LEFT AND RIGHT SHOULDER PAIN;
    BACK PAIN;
    HEADACHES
    JAW PAIN/TMJ
    FRACTURE OF TOOTH #14;
    PERRICORONITIS OF TOOTH #16;
    NUMBNESS AND TINGLING ACROSS BACK;
    DIFFICULTY BENDING;
    DIFFICULTY LOOKING AND SIDE TO SIDE;
    DIFFICULTY STANDING, DRESSING, DOING HOUSEHOLD CHORES, LIFTING, SLEEPING;
    DECREASED CERVICAL LORDOSIS;
    DECREASED LUMBAR LORDOSIS;
    INCREASED THORACIC KYPHOSIS;
    MARKED ATROPHY OF UPPER TRAP, LEVATOR AND SUPRASPINATUS;
    TENDER PARASPINALS CERVICAL AND THORACIC SPINE;
    NUMBNESS AND TINGLING DOWN BACK AND INTO HEAD;
    DECREASED SENSATION RIGHT SIDE OF CERVICAL SPINE, UPPER BACK AND UPPER EXTREMITIES;
    DECREASED PECTORAL FLEXIBILITY;
    UNABLE TO FEEL UPPER BACK DUE TO LOSS OF SENSATION;
    SENSATION LOSS INSIDE OF MOUTH;
    LIP NUMBNESS;
    HEAD TINGLING;
    RESTRICTED RANGE OF MOTION CERVICAL SPINE;
    STRAIGHTENING OF THE NORMAL CERVICAL LORDOSIS CONSISTENT WITH PARASPINAL SPASM;
    THORACOLUMBAR SCOLOSIS;
    NUMBNESS AND WEAKNESS BOTH ARMS AND SHOULDERS;
    CERVICAL PAIN RADIATING TO BOTH SHOULDERS AND DOWN RIGHT ARM INTO HER THUMB AND DOWN LEFT ARM TO ELBOW;
    DIFFUSE NUMBNESS ENTIRE HEAD AND FACE;
    CHRONIC PAIN SYMDROME;
    BRACHIAL NEURITIS;
    RADICULITIS;
    DISPLACEMENT OF CERVICAL INTERVERTEBRAL DISC;
    THORACIC DISC DEGENENERATION;
    THORACIC SPONDYLOSIS;
    spinal stenosis LUMBAR
    LUMBOSACRAL NEURITIS;
    PAIN IN LIMB;
    ABNORMALITY OF GAIT;
    VISUAL DISTURBANCES;
    IDIOPATH AUTONOMIC NEUROPATHY;
    CERVICALGIA;
    PAIN IN THORACIC SPINE;
    myafacle pain (spelling is not right sorry)

    there is more like my ANA went up, to a whopping 1:1180 that's right,,,and so did my TSH something to do with my pituitary gland,

    I had none of this before my crash, ,,,,had a MRI just before the Crash
    and it was ok,, and all my blood work was ok also
    now everything is going up,,

    No I am not really being treated at this time just my GP Dr and my PM Dr
    but they can only do so much due to Medacre and Medacaid will not cover anything that was from my auto,
    and my Auto Ins cut me off, last year, after a IME Dr working for then said
    I was ok and could go back to work,(the pain and injrys are where not from my autp crash! WOW
    also I could not lift my arms, would you want me to pick up your baby, being like this?
    Ex Nanny,,,, I was,


    this just kills me that,even thou I could not walk from foot drop and swelling and my toes curling under my foot! and pain,
    also and I could not open my hand , it was like lock close
    and I had no Tone! all on right side,
    this is when I could not walk and had nursing and PT and OT in my home,
    and then Ins Co pulled the plug on everything!

    I do not get the feeling of the flu, but its pain like nouthing I felt in my life

    thank you for answering me, and hope to hear from you again
    pain free hugs
    KB
    PS I am going to go see a RSD Dr July 1, and I am hoping we can get by the Ins part, and hope he will treat me,

     
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