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RLS + Failed Back Surgery Syndrome

I'm finding myself in a very interesting place, and my doctors seem exceptionally perplexed. I've had 2 fusion surgeries: the first was an L4-L5 fusion in 2018, and the second was a L3-L4 fusion in 2019. Post surgery I have been in debilitating pain and am unable to do pretty much anything (walk, stand, sit in normal chairs, bend, etc). Pain management has me on 40mg of Percocet per day which mitigates the pain, but doesn't do anything to actually stop it. They aren't sure the exact source of the pain and they have diagnosed me with Post Laminectomy Syndrome. HERE'S THE CATCH THOUGH: I have been suffering from Restless Leg Syndrome (RLS) for 20+ years. I'm on daily Klonopin and Requip for that. The catch-22 for me is that Klonopin + Percocet is a VERY dangerous combo (I'm a Registered Nurse Paralegal and I've seen some awful things when benzos and opiods are combined). I want to get off the Percocet ASAP. However without Klonopin my RLS becomes unbearable, and without Perocet (or stronger opioids) the back pain is a 10+. Gabopentin has been mentioned as something that could possible treat both issues, but I'm actually allergic to it. Spinal Cord Stimulation was also proposed, but the last time I had any type of electro-stim, my RLS was so irritated that I didn't sleep for 2 days. So, basically, I'm at a loss as are my doctors. My neuorologist said I have a hyperactive nervous system, so I will always react far more strongly to medications and surgeries than most people will. My surgeon said that, although there were risks, he didn't anticipate any long term issues with the surgery. Well...19 months and 2 surgeries later (the 2nd surgery done to try and fix the immense paid from the 1st surgery), my quality of life has gone to nonexistent and my doctors seem stumped. The RLS is really the thing that is foiling them at every turn. Has ANYONE else ever experienced this? I'm open to any/all suggestions at this point. I'm fortunate to live in a city with 2 world-class hospitals, but experts at both keep hitting dead ends. I've even been told that I might just be stuck with being incapacitated and in pain for the rest of my life. I'm not willing to accept that, so I'm happy to hear from anyone that might have something to offer. Thank so much!!

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Comments

  • L4_L5LL4_L5 Posts: 1,275
    edited 04/11/2020 - 12:07 AM

    @rnpara53

    Welcome to the forum.

    My doctor told me that if someone can’t tolerate Gabapentin perhaps Lyrica will be a good alternative. Have you spoken to him or her regarding Lyrica?

    I take the same meds as you, as well as Lyrica and Flexeril.

    The doctor who prescribes the Klonopin said he basically “grandfathered” me in as a Klonopin patient because I’ve been taking it daily for 25 years (long before my first encounter with him).

    My ex-girlfriend, who I’m still very good friends with, has a doctor who will no longer prescribe Klonopin to her. She was taking it for RLS and anxiety.

    She now takes a new medication for RLS. I’ll text her tomorrow because now I’m curious what she takes nowadays for RLS.

    Again, welcome, and I’m sure more people will be along shortly to chime in.

    PS: you aren’t that far from me. I bet we went to the same clinic for our consults. I’m not a candidate for surgery so I was turned away.

  • @L4_L5 Thanks so much for the reply! I actually was on Lyrica several years ago (early 2000's) when my RLS started to get really bad. After 1 year I had to get off of it because it literally fried my cognitive function. I couldn't put together basic 3 word sentences w/o getting confused. I thought I was losing my mind. Within 2 days of stopping Lyrica, I felt the fog lift and everything felt completely in focus. That's when we decided to try Requip and it worked beautifully. (I should mention that I was on Klonopin this entire time, so it could have been an interaction w/ the Lyrica that caused that problem). I'm also on Zanaflex for muscle spasms (Flexeril is another one of the drugs that, sadly, I'm allergic to).

    Thanks so much for your words of support - I greatly appreciate it! I bet we very well may have gone to the same clinic for consults!

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  • Have you tried Mirapex for your RLS?  I take it and it's been a miracle for me.

  • @rnpara53 - Bless your heart!  RLS for 20+ years! I feel your pain as I've been right there with you.  That was before many even believed there was such a thing.  (Some still don't!)  Over the years I've tried many things, and most caused other problems.  About 12+ years ago, I went to a neurologist to get off of Mirapex.  It was a gradual and difficult process.  He put me on 2 hydrocodone 10-325 every night, plus a valium.  That worked.  Almost 2 years ago when CBD Oil became legal I decided to give that a try.  After taking about 10 mg of CBD Oil for 3 nights, I decided to not take the hydrocodone any longer.  And... it worked!  My doctor thought 10 mg of CBD Oil to replace 2 hydrocodone tables was a good trade-off.

    Right now I'm taking Lyrica, post surgery for L-4, L5, S1 fusion last week, so I'm not using the CBD Oil (I hate mixing too many drugs together.)  I hope the Lyrica doesn't give me brain-fog!

  • edited 06/25/2020 - 6:23 PM

    Duplicate.  Sorry.

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