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Pain when chewing - any idea how long this may last?

Posted , 4 users are following.

LisaCACO
LisaCACO

I'm trying to shift my body from liquid foods (a smoothie a day) to solid foods but I have quite a few obstacles (reflux that feels like I'm swallowing hot coals for instance). All that aside, when I do chew food, it hurts the side where my GCA is the most dominant, which is the side where they did the surgery. My surgery was January 2nd. The site has healed but every time I put my jaw together I get a pain shooting up into the temple. The pain lingers after eating, so i have this really horrible headache. the headache then triggers the cranial nerve neuropathies and we have fireworks in my head.  Eating is not a joy. 

I wonder if anyone else with GCA has had pain chewing/eating and exactly when that pain stopped for them (if at all). I just assumed that 6 weeks after surgery it would be done with. I'm on 65mg of prednisone and my Rheumatologist treats this as not the original pain, but as a side issue that is for the most part ignored. I've had this pain eating since the beginning of the diagnosis. 

(FYI, I started in late december at 60 mg prednisone, had a biopsy 3 days later which was definitive, then since I was still having symptoms they bumped me up to 80 mg for a while, then tried to move me to 60mg, that didn't work so they moved me to 70mg. Now at 65mg (and staying put for a bit smile  Taking gabapentin for the peripheral neuropathies that have  cropped up, plus dropped omeprazole and ranitidine max doses for pantoprazole and ranitidine max doses.)

1 like, 9 replies

9 Replies

  • EileenH
    EileenH LisaCACO

    Posted

    Not quite clear Lisa - was the shooting pain there before the biopsy? It sounds as if there is some nerve damage which could either be from the op itself or due to impaired blood supply as a result of the GCA. The jaw pain I had was totally different, normal claudication type pain after chewing for a couple of minutes.
  • LisaCACO
    LisaCACO

    Posted

    sorry I wasn't clear.  I have had this pain since the biopsy. 
    • EileenH
      EileenH LisaCACO

      Posted

      Then I'd be inclined to think it is a damaged nerve from the surgeon's scalpel. I had knee surgery 20-odd years ago and the worst pain was obviously from cut nerves where the scar is. My husband has just had a Duyptren's contracture operated on and he is sitting there and suddenly jumps as a sharp pain runs up his hand and arm - he wasn't even doing anything! Biting is pretty hard muscle work and would irritate the nerve. Sounds horrible.
    • LisaCACO
      LisaCACO EileenH

      Posted

      if it's the nerve, I wonder if it's part of this whole neuropathy thing I have happening where it seems many of the nerves in my head just go off. If so, ugh. I guess gabapentin and I are going to be close personal friends for a long time...sad 

      maybe it just needs more time to settle down a bit. maybe 6 wks in the life of an area that was attacked in surgery isn't much time. I know they moved the nerve above my left eye and that took about 4 wks just to get over the little nudge the surgeon gave it. 

  • barbara75814
    barbara75814 LisaCACO

    Posted

    What does your doc say? This could use his/her attention, I think--
    • LisaCACO
      LisaCACO barbara75814

      Posted

      my doc doesn't say anything about it. I've mention to her that I still have this pain, but she's paying attention to my bloodwork, which looks good. that's all she's interested in.
  • LisaCACO
    LisaCACO

    Posted

    btw, what do you mean by normal claudication pain? what does that feel like to you?
    • EileenH
      EileenH LisaCACO

      Posted

      It's a (usually) dull ache in the jaw that starts when chewing, worse or comes on faster with harder food, or even if you have to talk a lot (say you're a teacher). The ache goes away when you stop the activity that causes it and then returns when you resume. It is due to the blood supply being reduced so the muscles don't get enough oxygen to cope with the activity - which is why it doesn't hurt when you aren't using them. It's a classical symptom of cranial GCA. You can have claudication pain in other muscle groups too if the arterieis supplying them are affected.
  • janet08828
    janet08828 LisaCACO

    Posted

    Poor you, sounds dreadful. I am a GCA sufferer and I have always been so thankful that it hasn't presented iself in my head - torso only.

    I can't help with anything that I have experienced other than that the prednisolone helped my symptoms within the first week, although 2 years on I am still fighting to reach a maintenance dose.

    I would have thought that with the high dose you are on you ought not to be experiencing such pain for so long so I agree with Eileen that it sounds like a nerve.

    Wow I really sympathise - as if you didn't have enough on your plate!

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