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Possible Causes of Bone Pain That's Spreading?

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  • #16
    My apologies for taking so long to get back to you all! Laryngitis struck, and while that usually only robs me of my speaking voice, this case knocked me out of commission and I was so wiped out that nothing got attended to while I recovered. Got my voice back now, and the first thing I want to use it for is to say THANK YOU for the warm welcome back and the suggestions.

    @Bonnette: I've talked with my GP about this and will have x-rays of the hip, pelvis, and right femur taken this week.

    @WFE: Hi Bente! So happy to hear from you, and even happier that your hello comes with news that you've finally gotten hold of some Vetericyn and it's working for you! That is *fantastic*! While I was away, I made another Norwegian friend, and I can't talk with him without also thinking about you. ~smiles~

    @GJ: Congratulations on clearing the five year mark with your remission -- that's HUGE! Have you allowed yourself to exhale yet?

    I'm almost certain that my doc will order an MRI if there isn't anything visible on the x-rays because that's the one diagnostic test I know can be done on island. The poor MRI techs will probably run screaming when they see my name on the schedule after the nightmarish and ultimately unsuccessful efforts they made in trying to do an MRI of my wisp of cervical cord. (It’s so thin they couldn‘t find it.)

    AVN/orthnecrosis is one of my concerns, especially now that the original pain is getting worse and other bones in the same area are hurting. Did they discover the AVN coincidental to one of your annual PET scans? Do/did you do anything to treat the condition besides managing the pain?

    @Emi2: even though I cringe at the thought of injections into my hip after a cortisone shot into my shoulder *caused* me a world of hurt instead of relieving one, learning that this pain is from something like bursitis rather than damaged bone would be very good news indeed. Thanks for sharing a success story.

    @KetKit: I think of you so often, my friend. I’m deeply saddened to hear that you’re hurting even worse now than you were before. I just can’t imagine how you keep hanging on some days, but I am so, so grateful you do. My central pain is also on the rise -- the pains I had before are becoming more intense, and now new areas are affected. There’s a *lovely* new pain between the big and second toes on my right foot that can best be described as paper cuts doused in lemon juice, a form of torture I’m certain was used with great success during the Inquisition. My heart goes out to you, and everyone else who is suffering with unmanaged pain.

    @mad mother: Hey Judy, big hugs to you for the hello! Seeing your handle here still has the same effect it always does -- an immediate lift to my spirits. I hope all is well in your corner of the world.

    @arndog: Jon, my friend and co-conspirator, how good it is to see you again, too! As I mentioned earlier, my doc is starting the diagnostic tests with x-rays and will progress to an MRI if nothing that would cause this type and intensity of pain. As far as having someone competent read them, remember where I am. ~lol~

    @darkeyed daisy: Hello, my friend! I really appreciate the info about alignment. It’s not something I stand a chance in hell of getting down here, but I’ve mentally bookmarked it for future use.

    @chompers: trigger points…got it. Since one of the ways this pain manifests is feeling like I’m being jabbed in the hip, femur, and pelvis, just the mention of a needle as part of the treatment is a very unpleasant thought!

    @loreo and alan: How nice of you to drop in and say hello. alan, I’m so sorry to hear that you’re still without any relief from your pain and loss of function. That really sucks.

    @dejerine: dej, I am so happy to hear from you, my personal go-to expert on all things pain. I didn’t think it was possible for central pain to manifest in bones, so I appreciate the confirmation. I had to ask -- this bone pain came on about the same time my existing central pain expanded to new areas and intensified. Both happening at about the same time was too much of a coincidence to ignore. Thank you, AGAIN, for sharing your seemingly bottomless knowledge base with us.

    @jody: Hey girl! I hope everything is going well in your world. I’ll have my doc check my vitamin D levels. It never would have occurred to me that might be at the heart of the problem, but it makes perfect sense. And what a relief if would be if this turned out to be something that can be fixed so easily.

    @GJ: Nope, I’m not taking any bisphosphonate meds. I asked my ortho surgeon about taking an anti-osteoporosis medication after he diagnosed me with that condition when I broke my tibia and fibula a couple of years ago. He was adamantly opposed to the idea, saying that the risk for jaw problems far outweighed any benefit I might derive because I’m unable to weight bear. Good thought, though, and I really appreciate that you were thinking about this so much that you came back to comment a second time. That is awesome.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

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    • #17
      I'm very glad to hear that you're going to have x-rays, possibly followed by an MRI (unwilling technicians notwithstanding). Hope that you will soon have results from tests, bloodwork for Vit. D and other concerns, and clinical exam info so that you can get on track to recover from this pain.
      MS with cervical and thoracic cord lesions

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      • #18
        Quote: My apologies for taking so long to get back to you all! Laryngitis struck, and while that usually only robs me of my speaking voice, this case knocked me out of commission and I was so wiped out that nothing got attended to while I recovered. Got my voice back now, and the first thing I want to use it for is to say THANK YOU for the warm welcome back and the suggestions.

        @GJ: Congratulations on clearing the five year mark with your remission -- that's HUGE! Have you allowed yourself to exhale yet?

        I'm almost certain that my doc will order an MRI if there isn't anything visible on the x-rays because that's the one diagnostic test I know can be done on island. The poor MRI techs will probably run screaming when they see my name on the schedule after the nightmarish and ultimately unsuccessful efforts they made in trying to do an MRI of my wisp of cervical cord. (It’s so thin they couldn‘t find it.)

        AVN/orthnecrosis is one of my concerns, especially now that the original pain is getting worse and other bones in the same area are hurting. Did they discover the AVN coincidental to one of your annual PET scans? Do/did you do anything to treat the condition besides managing the pain?


        Yes, the AVN in both hips and now in my right shoulder were recognized in the annual PET scans I have for non-Hodgkins lymphoma. I don't have pain from the ones in my hips, although, I sometimes wonder if it is the AVN "pain" in the hips that cause unexplained low level autonomia from time to time. The right shoulder is another story. The pain there is recognizable and sometimes debilitating. I am currently seeing with a pain specialist, working my way through a list of meds to find if something is effective. From what I have read here and elsewhere, the surgeries for shoulder AVN are questionably worth the lengthy recovery and down time.
        Hope your MRI goes well.

        All the best,
        GJ

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        • #19
          Forteo use and CNP connection ?

          Last month I started on Forteo for oseoporosis after 6 years on Actonel. I'm getting longer breakthru days with new pain sites in my foot/leg - gunshot wound at L4 with a very incomplete SCI & horrific CNP consequently..

          I'm wondering if any spinal bone growth is starting to push into around the damaged/frayed cord areas - creating new CNP (I already have a bad CNP history) ? I'm in a 3-day breakthru episode that is really bad...I'm just concerned & depleted this moment.

          Any input is appreciated, tks. Jim


          Originally posted by gjnl View Post
          I have just been re-reading this thread and began wondering if you are taking any bisphosphonate drugs for osteoporosis, i.e., # Alendronate (Fosamax), Risedronate (Actonel), Etidronate (Didronel), Ibandronate (Boniva), Pamidronate (Aredia), Zoledronate (Zometa), Bonefos (clodronate).

          This classification of drug (whether oral or IV) is known to cause bone pain (listed side effect in medication circular literature). I have had to stop taking any type of bisphosponate due to this debilitating side effect. I stopped all bisphosphonates and was on a two year course of Forteo, which is not a bisphosphonate (an daily injection medication) and then started a bisphosphonate again. Within 3-4 weeks the bone pain was back just as painful as before. If you are taking a bisphosphonate, you should discuss discontinuing this therapy with your physician. Just another thought....

          All the best,
          GJ
          '76 L4 GSW incomplete
          (cauda equina)

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