Dxed with CRPS after breaking elbow now cannot lay on side of head

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Hi.   I am new to this discussion group...and happy to have found all of you.

Just a short history.   I fell seven years ago breaking my right elbow.  I was lucky and was dxed within a month of my symptoms of shiny palm, burning pain, could not close hand.  It spread to my other arm after a bad blood draw.  I was put into immediate PT 5 days a week along with exercises I had to do 8 times a day.  It took almost a year, but most of my symptoms were better.  Still, if my hands get cold I am in trouble.

My question is does anyone have CRPS in their head?  I do not mean imagining this, but severe beyond severe pain on the side of their head.

I cannot lay on my left side because the region by my temple hurts.  If I do not lay on that side I just have pain that I can manage.   My doctor thought maybe I had vaculitis as I have RA, but the test for that was within normal limts.  I really do not think he believes me.  The pain is bad enough for my eyes to tear.  Any thoughts would be appreciated.

I really think it is CRPS either in the soft tissues or tendons by my ear or side of head. 

Thanks for listening.

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4 Replies

  • Posted

    Hi Mary, I also had a fall on my left elbow.  It took 18 months before a diagnosis.  It's now spread to my left leg, foot, head, face and eyes.  There are many times I can't lay on my head.  I have to prop myself up with pillows.  No one can understand when I say my head hurts....it's not a headache.  My head itself hurts.  It's almost a pain you can't describe.  Pain meds help but I cannot do PT.  As soon as they touch my upper shoulders, pain radiates thru my jaw like electrical currents.  One session and I had to call it quits.  You're not crazy.  Find another doctor who will help you.
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  • Posted

    Hi Mary,

    I think it is possible but there are many neuro conditions that could give similar symptoms.I am worried about this too.My head pains are terrible and the other day I had needle like pains in my cheekbones.It is a terrifying prospect so I understand your fear!My CRPS has been severe pain,burning my hand goes purple if cold,I am constantly blighted by needles,hot needle and wires.I try to distract myself from the pain and sometimes I'm successful.I sometimes think the fear is worse than the pain?

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  • Posted

    Yes .I have crps2 in my left hand and last month it spread to the left back half of my head.I'm getting a nerve simulator but that will not help my head..I'm lost on this. I hope you find some relief.
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    • Posted

      I was supposed to have an appt at Stanford on Monday, however the Specialist'Specialists schedule got changed. I'm now rescheduled for Monday 4/18. I will update you with any new updates or latest procedures after I see him. Good luck to you too. I will pray for you and everyone else on this site.
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