Arachnoiditis without pain???

Has anyone been diagnosed with arachnoiditis but had basically zero pain? His second idea seems even more unlikely -- CRPS.

My neurologist was thinking arachnoiditis was my problem last Spring & sent me to a pain management team at a university hospital for IVIg. The pain management specialists disagreed with him & refused to offer me that treatment. I ended up self-referring to a physiologist who figured out that the pain was being caused by neural adhesions & sent me to PT to do nerve glides. They helped immensely and now, other than when sitting for hours at a time, I basically have almost no pain at all.

Except, that is for the muscle spasms. My leg has been steadily losing function over the past 18 months. The EMG on my right leg came back abnormal & they thought it was an L5 radiculopathy, but the MRI was clean. In spite of that, I have continued to have weakness that has spread from my foot, to my calf, now to my thigh. Each time, one muscle in that area has died after multiple rounds of denervation/reennervation. The EMG showed both active & chronic damage. No pain there except for a few muscle spasms each day, but I have been falling every month for the past year anywhere from 4-6x/month. I also trip over my right foot on nearly a daily basis. I now walk with a cane and had to get adaptive controls for my car.

Then I started having issues with my right thumb back in December. Can't turn on lamps, hold a sewing needle, or a few other things I used to be able to do. I started dropping things. And I can only lift my right thumb up half as far as my left thumb. I drop things that weigh less than 1 pound 6-8x/month. Again, other than occasional cramps, there is no pain whatsoever & the cramps are not happening either just prior to or just after dropping stuff. In addition, I cannot lift either arm up over my head -- although I've had some difficulty (not this much) with that since my craniotomy/C1 lami because the muscle they cut there atrophied post-op.

In spite of not having pain with this, my neuro is convinced that it's one of those 2 things. He is quite smart, but I really don't see how either arachnoiditis or CRPS fits with my symptoms. Yes, I used to have horrible pain, but now I don't. And on top of that, he said that for it to be arachnoiditis, it would have to have started both at L5 & C5 at almost the same time & then is spreading simultaneously at both locations. Seems very improbable, but perhaps someone here can relate?

Thanks for any input!

Thanks, Susie. I appreciate your support.

I know it's very uncommon to have arachnoiditis without pain -- if it's even possible at all. Every study I can find show that 100% of subjects with arachnoiditis report pain. When it's broken down, it's either back pain (2%) or leg pain (4%) -- or more commonly, both (94%).

I am grateful that my pain has subsided. In that sense, the physiologist & PT's at Ability Lab were a godsend. I was taking 24 Advil per day to try to manage the pain since the opioid hysteria caused my former PM to stop prescribing most meds. I kept telling anyone who would listen that the pain was not near my spine, but rather where my SCS battery used to be. It hurt when it was implanted & continued to hurt after it was removed. I kept insisting it was irritating a nerve, but was told "there isn't a nerve there; that's your piriformis muscle". Turns out the sciatic nerve goes under, through or over the piriformis, depending on one's anatomy. The scar tissue from the infection that grew on my SCS had grabbed onto the sciatic nerve & would pull at it when I would sit down or change positions. The pain would bring me to tears. The nerve glides have been so wonderful because they, over time, break those tendrils of scar tissue so the nerve can move freely with me when I sit or change positions.

But while my daily pain is better -- other than those brutal spasms that spike up to an 8/9 for a few seconds to a few minutes -- all the falls bring acute pain. Sprained ankles, bruised ribs, black eyes, massive bruises ... just to name a few. The pain used to be awful, but at least then it made sense why I couldn't move very much. This is just so bizarre. I go to my PCP on Monday; hopefully she can convince another neuromuscular specialist to see me.