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@tooyoung

Thank you for your quick response and the concern you've shown!
What I hoped to find here was that I am not alone but it seems like my experience is esoteric... Not that any of us can ever fully understand what the next user is going through, I hoped that soomeone might be able to give me an idea of WHY mine is so problematic/painful and perhaps give me advice going forward!
I do have a ludicrous amount of anxiety/depression, but I feel like it comes directly from this pain and its consequent life changes and limitations.
And as far as the chronic pain group, it's hard for me to accept that so many people have thr's and have minimal pain afterwards and feeling like I will have chronic, lifelong, excruciating pain bc my docs won't do a thr!
I apologize, it seems I'm as lost and misguided here as I am in all of life! I'm just so tired of falling between the cracks!
Again. I'm sorry! If you'd like me to take down my story, I understand...

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Replies to "Thank you for your quick response and the concern you've shown! What I hoped to find..."

You said you "have a ludicrous amount of anxiety/depression". My observations during the 20+ years I have had PN, is that mood is very responsible for increases in pain levels. From frustration (for any reason) to stress, and any other types of mood, can all increase pain levels dramatically. There have been times when I had reduced levels of stress and had reduced levels of pain as well. When the stress comes back, the pain comes back. You also said " I'm as lost and misguided here " indicates you need to find some help in managing your life in general. Also, please don't apologize when telling your story and don't feel you need to take your story down; your experiences are as important as anyone else's here and we want to hear about your experiences so we can try to help you. We are here to help you deal with your PN by providing insight into our combined experiences in how we all deal with this disease on a daily basis. Regarding the THR you would like. I am sorry, but I don't know what a THR is, but if you feel it will help you control your pain and PN, find a different Dr. There are a huge number of medical professionals out there and each one has a different way of treating each problem they try to help patients deal with. If needed, go to a different Doc, try a specialist such as a Anesthesiologist. Also find a doc to talk to about your Anxiety/depression and your feeling of feeling lost and misguided. Your nervous system is complex and a part of every part of your body. Finally, some people have found help in their church. Letting God into your life can have dramatic results for some people. Please maintain participation in this group (or another like it if you prefer) but don't bottle everything up and please know we're all in this together and will help you as much as possible. Keep us informed about your status.

@tooyoung, right after I got my spacer the pain was excruciating, like nothing I'd ever experienced before. Unfortunately, it took my ortho a few days to realize just how bad it was for me, but fortunately he brought in an anesthesiologist who put in a pain block (sorry, I'm not sure if that's the correct term). It was a small tube that gradually released a local anesthetic at/near a my spine which gave me immediate relief (so I was also tethered to the IV bag and its pump). I think I had that for about three weeks. I still had moderate pain from the spacer after that was removed, but it was nothing like what I experienced at first. I don't know if maybe a nerve was damaged in the surgery to put in the spacer, or what, but it helped get me "over the hump". Good luck, I hope you can address your pain and eventually get the spacer out and a new THR.

Although there are many doctors and ways to attempt dealing with the variety of chronic pain conditions mentioned on this forum; I have occasionally found it helpful to reach out to a therapist to focus on ways to process my emotions associated with living with chronic illness......at those times, I feel like there is a weight temporarily lifted...and then I leave therapy for years and am able to manage, advocate for medical services in way too many ways to start to even describe, and continue to rely on strategies to promote calmness in my life, along with being able to sustain some minimal relationships and even a little fun! Then, the cycle seems to start again.....but we all seem to have a human condition and feeling grateful for what I do have seems to go a long way in going through each day...however they unfold.....