Pain - is it bad posture, chiari, or what?

[toomuchbrain]

I'm so tired of all the unknowns! I'm getting really frustrated. So, I thought I'd post here to see what you guys thought. I know I asked you about back pain earlier, and started thinking it was perhaps from sitting poorly at my desk. Well, I've been working on sitting properly, and having my chair set right, and I'm still having a lot of pain.
Here's what's going on:
pain and tingling in one shoulder (the mouse side)
pain, stiffness in my neck and down into the very top of my back
pain in top, middle, and lower back. tingling occassionally throughout.

Stretching, sitting properly, does not help. The only thing that seems to ease the pain a bit is moving around a bit, so I do that as much as I can, but that's very, very temporary. As soon as I sit down again the pain is back. And the pain and stiffness in my neck seem to never go away, I have few moments when that is completely gone.
I've also noticed, when I stand up suddenly when I'm having a rough pain day like this, my heart pounds like I just got done working out.

So now I'm wondering, is Chiari somehow causing all this? I know it can do weird things, but this seems a little odd. I plan to see a neurologist next week about spasming in my leg, so I will mention this, but I'm afraid he's just going to send me to see the neurosurgeon again, and I won't get any definitive answers.

Any advice anyone? I'm willing to try anything, talk to anyone, go just about anywhere I can! I'm desperate at this point. The pain is so bad it's difficult to do my job, and it's really slowing me down, which isn't good during our busiest season!
As a side note, the headaches seem to get worse at my desk as well. They seem to come from my lower back head and around to my jaw.

[selmaS]

  Hi....very much so,....I always had limited range of motion with my neck...I would have to move my whole body to look behind me....but, the stiffness is gone and my range of motion is sooooo much better.....

  Mention everything...even if u do not think it may be an issue...I think medical terms mess us up and we under report issues....

Chiari, syringomyelia and tethered cord all can affect the bladder and they r all related conditions...so ne changes too much or too little report.

   Heart rates that change when u change position could possibly be POTS and should be reported....keep close track of ur BP.

    "selma"

[toomuchbrain]

I dont remember mentioning it to the NS. I know I mentioned it at some point a few years ago, and got blown off, so I left it at that.
Also, I just read about someone else who has to urinate frequently - that is SO me! To the point it gets me in trouble at work, and hubby and I can't even grocery shop without my stopping at least once. Never mentioned that, didn't think it fell under 'urinary incontinence' but I guess I will have to, now.

[jenshead]

Do mention to your dr the heart pounding upon standing.  It may be nothing, or it may be something.  I just hear of it frequently in relation to POTS, which is a condition that comes along with Chiari...selma knows more about that than I do.

[toomuchbrain]

Did you find the surgery helped with any of these issues? Especially the stiff neck, did the surgery ease that at all?

[selmaS]

  Trust me I know just how u feel.

  I had days where I could barely walk to my car.....sitting even when we get up and move about is not always the answer for those of us with chiari.

   And do think about the glasses for the lights....that may help u too.
  
     Good Luck

     "selma"

[toomuchbrain]

So sorry for the late thank you, I've been avoiding the internet/computer. :) But thank you so so much for your response. You gave me hope that perhaps I can find a way to be comfortable at work. Or at least, in less pain!
I see a neuro this week, so I hope to ask him about this, and mention the posture method you mentioned. Perhaps he knows of a local class, or good book to recommend.
I have fluorescent lights (sp?) but they're dim. I'm thinking if I bring in a desk lamp, it may help? I have a small cube, so it would have to go beside/behind my monitor, but I'll try anything. I have to pick one up, though, when I get paid.

I do have my monitor raised, it was one of the first things the ergo specialist did for me. Everything he did helped temporarily, and even though I'm still following his orders, the pain is back. Same, perhaps even worse!
Having a desk job IS painful, and it DOES stink. I hate it! But, I couldnt do anything else due to lupus, so it's a catch 22 for me!

[selmaS]

  Hi..I too had a desk job and know too well all the pains u get sitting...so many think ..."well u have a job sitting how bad can it be"...well let me tell u, it  can get really bad!

First, if u r working on a computer is the monitor raised to ur eye level?...or r u looking down...if u r looking down this could be a big part of ur problem.....I put my monitor on a box yrs b4 I was ever dx'd bcuz I noticed the neck pain and it did help, it doesn't take it all away, but it is one less issue to deal with.

Posture is very important for all of us and I was told by my NS and NL to check out Feldenkrais method....The Feldenkrais Method is a somatic educational system designed by Moshé Feldenkrais (1904–1984). The Feldenkrais method aims to improve movement repertoire, aiming to expand and refine the use of the self through awareness, in order to reduce pain or limitations in movement, and promote general well-being.
....there r books out there on this and some  classes u can take as well to learn this...my DD  actually told me about this technique yrs b4 my Dr so they were surprised I knew what they were talking about.

Again this will help, but chiari is the root issue, as it affects all the nerves....

Also, what type of lighting do u have at work?....I found that florescent lights affects me .....so mayb a pair of tinted  glasses may help???

  "selma"