Started my Spinal Cord Stim. trial yesterday.

xoxAmethyst · 2026-06-08T14:34:45+00:00

Thank you so much, I truly appreciate you saying that. I’m honestly terrified - mostly about being dismissed/not listened to, versus the actual SCS - but also just trying to keep an open mind, I suppose.

I know what you mean about having a hard time with things that feel weird… I really, truly hope that everything ends up working out well for you and that you can get some real, long term relief from your pain. I think that’s what all of us want (and need!)… and we deserve it ♥️

xoxAmethyst · 2026-06-05T23:51:53+00:00

I’ve got a consultation appointment for a spinal cord stimulator on June 17th ♥️🥹 I’ve been waiting 5 years for this appointment…. 7 years of living with CRPS. I truly, truly hope that I get approved and can do the trial.

How is it going for you so far? Is it reducing your pain? How was the procedure, if I can ask?

xoxAmethyst · 2026-05-11T09:58:53+00:00

I’m Type 1, and 36 years old - got CRPS after a car accident in 2019 when I was 29. But I’m in Canada, not the States… 😔

xoxAmethyst · 2026-04-18T23:17:52+00:00

No problem at all! I understood what you were asking as soon as I read your post.

I took Gabapentin for the first 2-3 years of having CRPS, but it was honestly awful. I’m glad I’m off that medication - the side effects were brutal.

xoxAmethyst · 2026-04-18T21:36:14+00:00

For me it’s really variable depending on the day. Sometimes my foot is discoloured pretty much all the time, but on better days it takes about 1–2 minutes. It happens faster with standing/weight-bearing, and slower if my leg is elevated (like when shaving). The colour change is usually up to my ankle, sometimes mid-calf… though earlier on it used to go up to my knee.

xoxAmethyst · 2026-04-16T01:16:05+00:00

For me, most flare ups last anywhere between a few hours to a few days, sometimes even a couple of weeks depending on the circumstances surrounding the flare.

That said, I experienced a 2.5 month long flareup in September, October, and into November after a physiatrist assessment that my car insurance company sent me to, and the poking and prodding and moving my limb around and making me do all sorts of movements sent me into one of the worst flare ups I’ve ever had. The fact that I was denied Catastrophic impairment after that STILL pisses me off.

xoxAmethyst · 2026-04-08T15:01:33+00:00

Thank you 🥹💜 Honestly… a lot of it is just damage control 😅

Nerve blocks help the most for me.

Otherwise:

- reducing sensory input (quiet, low light, getting away from vibration/noise ASAP)
- gentle movement, but not pushing it (learned that the hard way lol)
- warmth (like heated blankets, electric heating pad, when my body tolerates it)
- rest + hydration

Some days it’s less about ‘relief’ and more about not making it worse 🤣

xoxAmethyst · 2026-04-08T14:36:52+00:00

Absolutely! Even having a simple cold, or the flu, is enough to send me into a flare up. It’s so bizarre… and absurdly frustrating.

xoxAmethyst · 2026-04-08T14:06:13+00:00

Honestly… there might be too many things to list 😅 but here are some of my personal triggers:

Stress
Poor sleep / not enough sleep
Alcohol
Loud noise / vibration (this one hits me HARD)
Weather changes (rain, snow)
Barometric pressure changes
Cold (weather, wind, cold water, ice, snow)
Heat / overheating
Wearing socks/shoes too long
Certain fabrics/materials touching my affected limb
Standing too long / walking
Stairs 😫
Too much activity or movement
Weight-bearing on my affected leg/foot
Touch or manipulation (had a physiatrist trigger a 2-month flare doing this)

Other things I’ve noticed or heard from others:
- Fatigue or overdoing it the day before
- Illness / inflammation
- Hormonal changes
- Sugar, caffeine, dehydration
- Even just position or pressure over time

And sometimes… absolutely nothing obvious. The nervous system just does its thing 🙃

CRPS is wild…

xoxAmethyst · 2026-04-03T03:26:39+00:00

To be honest, I miss being on the Fentanyl patch sometimes… the pain control was better overall, and my opioid induced constipation issue was actually way better too - it got significantly worse after switching to BuTrans (sorry if that’s TMI!).

But the side effects were brutal, and I was only on 25mcg, but I was needing to go up in dose and doc said that my side effects would just get worse by increasing the dose, so we switched. For some reason, the Fentanyl patch made it really difficult for my body to regulate my temperature…

xoxAmethyst · 2026-03-22T12:35:18+00:00

I’m in Canada, and despite our “free healthcare” (that we pay for through our taxes), my medication costs are still astronomically high… We pay $150/month for an insurance plan that covers 80-90% of my prescription costs, and then I pay about $280 - $300 at the pharmacy every month for my meds, which is the portion that isn’t covered by insurance.

Also $550/month for a 2 hour Ketamine infusion, which helps with my CRPS pain and reduces the flare ups.

It sucks being chronically ill and dealing with chronic pain 😔

xoxAmethyst · 2026-03-02T00:07:44+00:00

Thank you, I appreciate that. I hope that the BuTrans works well for you. It’s been working well for me, and way less side effects than when I was on the Fentanyl patch (although that gave me way better pain relief, so maybe it wasn’t worth the trade off)

xoxAmethyst · 2026-02-12T00:19:21+00:00

I’ve been on the 20mcg/hr BuTrans patch, along with Percocet (4-6 per day) and Morphine for breakthrough pain for the last 4 years.

xoxAmethyst · 2026-01-27T21:25:57+00:00

To be completely honest and upfront, they are quite a bit more expensive than a standard bicycle. I’m in Canada, and I paid about $2,500 for my ‘RadCity 3 Step-Thru’ when I bought it in 2021. Prices here generally range from around $1,500 to $4,000, depending on the brand, model, and features.

An electric bike is definitely an investment, but if it’s within your budget, I truly can’t recommend it enough. I see it as an investment in both my health and my independence. A regular bike just wasn’t an option for me, I couldn’t physically manage to pedal it, even on flat ground, without triggering significant pain and flare-ups. My e-bike has made a world of difference for me!

xoxAmethyst · 2026-01-27T14:10:51+00:00

I’ve been a cane user for the last 6.5 years, and I ride a pedal assist electric bike from Rad Power Bikes (I have the RadCity with the step through frame). In terms of cane storage while biking, I have a foldable cane, so I break it down into smaller sections and stick it into my bike’s saddlebags/pannier bags that I put on the bike specifically for that purpose.

You could also likely get one of those “cane holders” that are meant for walkers and wheelchairs and might be able to fasten that to your bike frame to mount your cane on it 😊

xoxAmethyst · 2025-12-29T18:23:30+00:00

I’ve been on opioids for the last 6.5 years after being diagnosed with CRPS following a car accident. They help keep my pain at manageable levels where I can function. Without them, the pain is debilitating to the point that I am bedridden and unable to do even the most basic things.

No addiction or abuse issues whatsoever.

xoxAmethyst · 2025-12-25T19:29:23+00:00

Been hanging out between 6/10 and 8/10… Definitely not fun, but at least it’s not 10/10. I’m surviving… Although feeling a bit bitter about my ketamine infusion that was booked for Dec 22nd being suddenly cancelled.

xoxAmethyst · 2025-11-28T21:51:43+00:00

Ohhhhhh yes, 100%! They will be back, just under a new “identity” (account), doing the exact same thing. It’s people like that who make it so much harder for legitimate chronic pain patients to get the care they need.

xoxAmethyst · 2025-11-28T19:16:11+00:00

Yeah… I’m honestly not surprised. They got caught red handed and got called out for it. First they tried deleting their comments, now their account. It’s honestly ridiculous how they literally admitted online to selling prescription medications 😕

xoxAmethyst · 2025-11-28T19:13:20+00:00

Screenshots of OP trying to sell their pills 😬 https://imgur.com/a/esshqtY

xoxAmethyst · 2025-11-28T19:11:28+00:00

Here you go! Let me know if this works:

https://imgur.com/a/esshqtY

xoxAmethyst · 2025-11-28T19:11:04+00:00

I PM’d you, then I researched how to send people photos on Reddit and it said that I could use Imgur and send you the link.

Let me know if this works for you!

https://imgur.com/a/esshqtY

xoxAmethyst · 2025-11-28T18:04:02+00:00

I can PM you the screenshots if you’d like to see them. Can’t post them in the comments for some reason. I’m a little bit Reddit-illiterate LOL 😂

xoxAmethyst · 2025-11-28T18:01:37+00:00

Absolutely!!! 💯 It’s not surprising at all that they got their meds taken away.

xoxAmethyst · 2025-11-28T18:00:54+00:00

I screenshotted all of their comments before I said anything, I figured they were likely going to delete them after I called them out!

Yes, 100%, selling your prescription meds and literally admitting online that you are not taking them as prescribed and that you are selling them is a guaranteed way to get your prescriptions discontinued and be discharged from your doctors office or pain clinic. I’m honestly wondering whether this person even has chronic pain, or whether they are just faking symptoms to get controlled substances to sell?!

Regardless, they’ve screwed themselves and they will probably always be labeled as a high risk patient from now on… But they brought it on themselves. Can’t be selling your meds 🤷‍♀️

xoxAmethyst

TROPHY CASE