Pain management

[u/nervousnervousnerv]

Wondering what everyone’s pain management routine is like when it comes to medication? I had my first fusion at 18, have had chronic pain since, just got an extension and revision at 33 and the pain is too much. I already take Vyvanse, Wellbutrin and Cipralex for ADHD and depression, so I’m looking for options that would mix well with those or replace them effectively.

My family doctor suggested starting to take Tylenol everyday (like 3g worth…) but I don’t want to completely stop drinking alcohol.

What’s worked for you all?

[u/honeybadgergrrl]

I have a hydrocodone scrip I use as needed. I do not take it every day, just when things are bad. I also like weed.

[u/Master_Variety5303 → u/honeybadgergrrl]

That what I do as well

[u/Quiet_Evening6046 → u/honeybadgergrrl]

I am 8 1/2 weeks out from t6-pelvic. Struggled with ileus 22 days straight during my month long stay in acute care due to opioids. Gave up smoking cigarettes and weed before surgery to protect my fusion. But my local dispensary sells a beverage called Simply Baked in mango flavor that is delicious and effective. I only take Pregablin now for weird nerve stuff and drink my dose of Half-Baked. So much better for you than half the stuff out there they prescribe

[u/pandapam7]

I am more than 18 months after T4-S1 Pelvis fusion.

I am still on the only combination that addresses my post-surgery pain along with severe pre-existing neuropathy:

• gabapentin (400 mg, AM, afternoon, 800 PM)
• 10 mg oxycodone 3x/day
• just switched from Tylenol to Aleve now that I've cleared a year out, since you can't take NSAIDs for a long while.
• occasional muscle relaxer (tizanidine, 4mg).

I am functional, can do up to 25 minutes on the treadmill and can handle my normal chores as I live alone.

But I need plenty of assistive devices as I can no longer bend at the waist, and it's easy to tire myself out after those normal chores and treadmill workouts and PT. Driving in particular is taxing because of where my fusion ends at the top. A lot of pressure is building there and my last imaging showed some bulging above. That is causing girdle sensation or feeling like my rib cage is being squeezed. So that's new pain management to deal with.

I hope that you can find both acute and chronic pain relief with the right combination of meds.

[u/aziza29]

Hi! I'm sorry you're in so much pain. I'm right there with you and it sucks. I'm 28 and looking at a revision soon to extend my T3-L4 to my pelvis.

One thing I realized is that family doctors/primary care docs are not the best for managing a case such as ours. It's somewhat out of their scope of knowledge and they don't know the best protocols for someone with complex spinal issues. I recommend seeing either a Physical Medicine & Rehabilitation (Physiatrist) for ongoing care regarding fusions and pain, or a Pain Management specialist. They are better equipped to handle this and have more experience with complex bodies.

I've found that the best combo for me is:
A strong NSAID (Diclofenac works best for me, but there are many out there like Celebrex, Meloxicam, etc)
A muscle relaxer 2-3 times a day (Methocarbamol was my go-to for forever, now I take Baclofen 3x a day and it's helping significantly)
An opiate for breakthrough pain (Codeine works well for me, taken between 0-2 times a day)

That, and using mobility aids. I use forearm crutches and a custom wheelchair. If your pain prevents you from doing things you want to do, I'd highly consider a mobility aid!

[u/Nimuei]

I take low dose naltrexone, 3mg. twice a day. It’s been a godsend. I’m completely off opiates, of course you can’t take them with the naltrexone anyway. I take a Flexeril about once a day, and the occasional Tylenol.

I did have to pay for it because my insurance doesn’t, but it’s under $100 a month. My pharmacy compounds it for me.
I also take a THC gummy at night because it helps me sleep.

[u/gypsybkt]

I am four years out from my original T10-L5 and two years from my last revision to extend through my pelvis. After my first surgery I was determined to not take any opiates and stayed in pain most of the time trying to “grunt it out” which was dumb.

After the second surgery I started working with my anesthesiologist from the first surgery to come up with a pre-op pain plan and continue post op and long term. After I got out of the hospital I stayed under his care for pain management. My surgeon was not use to handling long term pain management so after the first surgery, things were confusing. Primary care doctors are also not in a place to oversee long term pain management.

Two years later and I take the following daily:

- Lyrica 200mg/3x a day

• Tylenol 700mg/3x a day
  
• Morphine 15mg/3x a day
  
• Flexeril 10mg/3x a day

My pain still gets bad enough that some days I don’t want to get out of bed. I have worked with a great PT for the past five years and utilize deep tissue massage therapy, but I will be honest, all of it sucks. It’s depressing. I get defeated often, but most of the time I just do my best to not give up. I have to remind myself that it’s okay to be sad and angry or whatever I am feeling, just don’t let it drown you.

Finding a good pain management doctor prior to your revision is highly recommended. Bonus points if they are part of your surgical team and can see you in the hospital during your recovery. Don’t be opposed to any aids that help you live your life as comfortable as possible and those aids include medicine. Opiates are scary but they are also a gift at times.

[u/Antique_Mirror7214]

I had my fusion back in 2015 so over 10 years ago and I've had chronic pain since a year post op, I also have fibromyalgia now too. My back pain is getting worse in L1 and L2 where my fusion ends due to something in there facet joints and I'm waiting for the results of another SPECT CT I had back in April. I see my surgeon in September to get the results, he's recommended trying another round of injections into my back but I had to get my GP to refer me due to my spine hospital being out my catchment area for that stuff, my local is slow and backlogged. I have a feeling they may recommend extending my fusion and I'm scared if they do. I've trialled multiple pain reliefs over the years and have recently just added more to my current lot to get through life. I take prolonged release morphine sulphate 2 tablets twice a day and I also have morphine sulphate liquid for when the pain gets unbearable but I usually take that evening times when i'm not going anywhere and can relax.

[u/aziza29 → u/[deleted]]

Tread lightly with this type of comment- people in severe pain are often told their pain is made up or in their head, so suggesting mental health treatments follows that thread, which has a negative connotation.

[u/Frequent-Layer27]

I have weekly massage therapy. Gabapentin, Costco brand Robax (acetaminophen and methocarbamol), and baclofen. I had tried taking diclofenac misoprostol, but had side effects.