Managing Pain is a Pain in The *** … Myeloma, you’re Sending Me Over the Edge…

9.16.18

So I was going to post the other day, then the other day, and the other day, but Myeloma stole my life. I wanted to share my amazing CBC lab results from 9.9.18, the day before my Darzalex infusion on 9.10.18, but then life just moved forward and this craaaaaazy leg pain totally sabotaged me again.

I’m seeing a pattern now of this mind bending, maddening, intense, unrelenting bone, nerve, muscle pain. It invades when my weekly Dex steroids fade. For me, my 20mg or 40mg Dex steroids relieve my pain and inflammation for about 36-48 hours. Then this deep, resonating, incessant pain returns to my Left side rear, upper leg and calf, always at night, when I want to sit and relax or sleep. I feel it gradually coming on, as I slow down for the day, then it totally revvs up when I sit or lay down to sleep. Then it becomes totally unbearable at night from around 10pm to 2:30ish am. I can’t even put in to words how awful it is… Guess I am finally understanding what most Myeloma patients experience with unrelenting internal body pain from myeloma’s ravages. Sciatica is the closest I’ve come to a description of it, but it’s so much deeper… but I’ve never had a “sciatica problem” before… so what do I know??

It’s so hard to describe this excruciating pain as it’s so deep inside my body, creeping in slowly and stealing my nights. I am only able to write this blog now, as I took steroids early this morning, so sitting is not driving me mad. The pain is not like if someone kicked you in the shin, or you fell off a bike or horse and had skin road rash. This bone, nerve, muscle pain is so deep. Deep and resonating and reverberating. It hurts and throbs. It radiates up and down my lower extremities. It’s like internal drilling, but muffled. Does that make sense? Here’s how it happens and what I do to try and alleviate it…

At first I thought it was just a passing, temporary event, once in a while thing. But looking back now, I truly believe it all began after the Zometa infusion disaster (see all my July 2018 posts!) July was just awful, awful with my broken/fractured rib craziness. Then my severe unheard of extreme sickness reaction to my first disasterous Zometa infusion (see my July 2018 posts :)  But I finally felt better in August, thought this ridiculousness was over. WRONG! I began to see the pattern of pain, when the steroids wore off. See, Dex saves me for about 2 days. Then when I begin crash, and the power of anti inflammatory steroids wear off… I’m done for! Previously, I had a pretty good tolerance for pain, but not any more, or what I experience now with Myeloma, is something from another Universe… this is just intolerable…

So for the last several nights, I’ve been in misery. When I feel it coming on, I start with low dose kid’s Advil or Tylenol. Then if that doesn’t help, I add the adult version. When that doesn’t help, I add another one. Yes this is over the course of a few hours. Then I add Flexeril, a muscle relaxant, then I slather myself in Bengay, as that does seem to help a bit, and the lovely Wintergreen scent helps me breathe deeply, as by this time, the intensity of pain takes my breath away.

Between all this, I am trying to relax on the couch or recliner. Can’t. The pain forces me to get up and walk, stretch, shake out my leg vigorously, walk, stamp my feet, etc, anything that can send shock waves into that area! But as I’m doing that, I worry I’m taking the chance of breaking/fracturing something. I worry I’ll crack something with everything I do to try to alleviate the pain. Ugh, it’s so incredibly frustrating not knowing what the heck is going on inside of me. But I have a MRI scheduled for this Wed Sept 19, to hopefully shed light on this disaster.

When I try to go to sleep, this PAIN has another plan for me. The internal resonating, vibrating, throbbing is just relentless. I try deep breathing to “will it away”. I lay there thinking this just can’t be happening. This can’t be for real. When I can’t stand it any longer and I get up, sit up, get my wits about myself, as by this time, I’m kinda dizzy. Then I begin walking, pacing, stamping my legs. I take another Tylenol or Advil. I slather on more Bengay. I’m soooooooooo tired I can’t stand it. Literally, I don’t want to stand, I don’t want to walk, I just want to relax, to sleep. But my body won’t allow it… my mind goes desperate places at this time… how long will this last, is the beginning of my “end”. Is this how Myeloma patients die?

I decided this time to take 1 steroid pill, as I was due for my weekly dose today or tomorrow anyway. I never take Dex at night, but I thought, I just don’t know what else to do, and it’s a magical anti inflammatory. My plan then was to take the remaining pills in the morning…

Finally, I fell asleep. Whether it was from all the meds finally kicking in, the 1 steroid pill, or from exhaustion, I don’t know. But I finally slept. I awoke around 7am and took the remaining 4 pills for a total of 20mg (I take the 40mg on Darza treatment days), and went back to sleep. INCREDIBLY I slept until around 11ish and couldn’t believe the RELIEF I felt! You know that feeling when you find that perfect spot on your pillow and bed… well I had that feeling… and pain free. I felt 30 years younger. So AMAZING. I just laid there, totally amazed and savoring the pain free moment!

All this forces me to come to terms with my new painful life. I had a difficult day emotionally. Many forced realities sinking in. Wondering where all this is going… wondering if now, bone pain, body pain, life pain is now my agenda. I’ve been sad all day, and angry. Frustrated with so much. Treatment and challenges for 9 years is a long time. Can you even imagine being “sick” for 9 years. Yes I know there are hundreds of myeloma patients out there who have many more years on me, an that’s so incredibly amazing. Everyone’s journey is different. Everyone handles illness, side effects and pain differently. Myeloma presents itself so differently for everyone. My early journey was super GI challenging for years and years. Now the volcanic diarrhea is gone, and in place of it, I have unrelenting pain. Where is all this going… would I want to look into a magical crystal ball, and see my future??? Would you??

Today I spent time reading about side effects from all my medications. Yes, Darzalex, Pomalyst, Acyclovir, all cause muscular, nerve and bone pain. AND OF COURSE MY NEMESIS ZOMETA! So what am I to do? I have to treat myeloma, and all medications have side effects. If I lower doses, myeloma wins. If I stop taking these, myeloma wins. If I switch, what do I switch to? I’m running out of options… except for a few and then it’s clinical trials, which scare the %@#! out of me…

So I’ll suck it up, and at my next appointment, I will ask for “adult, cancer patient” pain medication. More side effects… ugh… Can I just go back to the 1990s?

Here’s my original reason I was going to post last week :)) With all this pain, and craziness, I can’t believe these CBC results! Maybe PAIN CURES MYELOMA?? ahahhaaa

OMG can you believe these results!
Haven’t had “normal” CBCs since maybe 2007!!!
And whoohoo! I’m far from my
usual Neutropenic!!
Do you think they mixed my blood with someone else’s??? LOL
Hoping your life is peaceful, fulfilling, fun, joyous and pain free!
More updates to come, as pain is just around the corner as Dex wears off, and so is my MRI on Wed 9/19, more labs probably that same day, and then Dr appointment and Darza treatment day on Mon Sept 24. So in a week I’ll know the results of the MRI… wow… I wonder… just wonder WHAT THE HECK IT WILL SHOW… 
Thanks for reading, commenting and caring about my crazy myeloma journey. xoxo