metastatic bone pain from advanced PC

[3100connecticut]

Can anyone who actually has it please describe for me exactly what metastatic bone pain feels like.

I've got prostate cancer. No doubt about that.

Gleason score from biopsy 5+4=9 bilaterally.

MRI report says among other things "diffuse inhomogeneous marrow signals of bony pelvis...correlate with bone scan to rule out bony metastasis."

Bone scan reports "metastatic lesion at left sacroiliac cannot be ruled out. Suggest follow-up study." I'm not sure what other follow-up studies there are.

Every doctor I've spoken to says something to the effect that I will likely be experiencing bone pain sooner or later but none of them is specific on what that is, as distinguished from the garden variety aches and pains you wake up with most mornings at my age (77) which usually fade away once I'm up and about and done some stretching. Until now the only PC-related symptom I've experienced is the frequent need to piss.

Started Firmagon shots last week.

Thanks for any enlightenment.

[Zetabow]

I have two different types of pain, in legs and Ribs, the first indication of something wrong was the pain in my legs, I had no other symptoms. first pain builds up in waves and fades off, the other is like being stuck by lightning (Neuropathic pain) I would literally jump like electric shock, even in my sleep. This seems to have improved with the Chemo but the constant wave pain still bugs me, although not quite as intense now.

If you have no pain, be happy and thankful, for those days the pain doesn't let up, it can get me down mentally.

[3100connecticut in reply to Zetabow]

Thanks for sharing. That doesn't sound like any fun at all, but it gives me a better idea what to watch for. Keep your chin up.

[3100connecticut]

It does indeed help and thank you kindly. I've gotten through three spinal operations over the years and thought I had experienced all sorts of pain but nothing like what you describe. Not looking forward to that at all. All my empathy to you.

[524nurse]

I was a hospice nurse a few years back. The best treatment I found was diclofenic patch. Least side effects with best results. They say change is every 3 days. But sometimes it was needed sooner. You’ll know bone pain. You be able to point to it

[3100connecticut in reply to 524nurse]

Thank you for your response. Thankfully I've not yet experienced bone pain as described by you and others. But with advanced PCa it's probably lurking in my future. Hoping the Firmagon shots I just started will delay or mitigate it. I do have a variety of other types of pain, mostly stiff joints and muscle on awakening. I usually take ibuprofen and sometimes apply Voltaren gel, both of which seem to help. But I see now that Voltaren is a brand name for the diclofenic that you mention. Have you found the patch more effective than gel?