Spinal Stenosis = RLS for me

[Dr. Grammy]

I suffered from 2004 to about 2018, when my interventional radiologist did an epidural spinal injection. I cut my 0pi0d medication by half, then 3/4, then to zero. I realized the jerking that had damaged decades of my life had vanished.

That lasted about three months. The second injection lasted about 2 months. The third lasted only a week.

That's when the doctor said, "Your MRI shows spinal stenosis. That's what's been irritating your spine and causing your legs to jerk. It's time for surgery."

My surgery--a laminotomy of two lumbar spine areas--is scheduled for September 14, 2023. It's outpatient.

All surgical recovery is painful, but I'm hoping to get rid of both the jerking and the radiculopathy I've had for a few years (it strikes whenever I stand up after lying down for 20 minutes or more).

I see so much research into RLS. I sure wish someone would do MRIs of a few hundred patients, whether or not they have pain in their legs or backs, and find out how many of us have RLS caused by spinal stenosis!

[Polar Bear]

I read your post with interest as I have just this week been officially diagnosed with spinal stenosis in both the.neck and lumbar and have been referred to the Spinal surgical Unit. It has been known for some time that there was narrowing and indeed last year my Movement Disorder Doctor felt this may have a bearing on my RLS.
However it was a recent suspected meningitis (it wasnt) scare that promoted my recent neck MRI and this urgent referral to the SSU. My lumbar MIR was done last year. I don't yet know the completely full details of my neck MRI. My hip pain is upon standing after sitting or lying down.
I've had severe RLS for nearly 40 years.
So much research is needed.

[CheriM]

I’ve had spinal stenosis for years and have had two laminectomy surgeries, which helped the back pain but didn’t affect my RLS. It wasn’t until I saw Dr. Buchfuhrer that I got RLS relief. He put me on a small dose of Suboxone (Buprenorphine and Nalaxone), which has solved my RLS problem. It took a long time getting my insurance changed to be able to see Dr. B, and I had to fly from SF Bay Area to Los Angeles, but it was worthwhile. I consider myself very lucky.

[Polar Bear]

You hit the jackpot to have seen Dr B.
Dr B even responds to random emails with advice.
Thank you for sharing your experience regarding your laminectomy surgeries.

[rvjimzhr1]

"He put me on a small dose of Suboxone (Buprenorphine and Nalaxone), which has solved my RLS problem."

Cheri,

I've been on Gabapentin for about 5 years and it's not all that effective (1200mg after dinner & 1200mg 2 hrs later). I recently tried Suboxone but stopped after 2 nights because of side-effects. My dose was 1/2 of a 2-0.5 tablet sublingual at bedtime. Can you tell me what your dose was/is and if it's still effective? Have you had any disturbing side effects?

Thanks!

Jim

[debbluebird]

I started with a 1/4 of the film, taking it twice. It wasn't easy to cut it, but I have tiny scizzors, 1 mg. Now I take 1/2 at 4 pm and the other half at 6:30 pm. So a total of 2 mg. I don't know how I came up with those times.
My only side effect has been sleepiness at times. Sometimes just after noon, but usually after the second dose.
Before buprenorphine/suboxone, I took methadone. When I first started taking it, I had nausea for two months. Then it went away.
I have had the best results from taking suboxone. I've had months or weeks with no RLS.
I also take gabapentin 1800 mg.

[rvjimzhr1]

Deb, I don't understand the size of the pill you're taking. Is it the same as mine? Is mine also a "film"? Is 1/4 of that pill then 1/2mg ? If so then you started with 1/2 mg twice and have since bumped it up to 1mg twice? And how long did you try the first dose before you bumped it up to 2mg?

The side effects that I had were strange vision. One night I had strange vision issues while reading where the words and letters were literally jumping off the page and bouncing around....crazy!! It was like I was inside the Bingo ball machine! The half-pill dose kept me under the inlfluence from 9PM until nearly 11AM the next day and my blood pressure jumped up from avg 125 to 158 Systolic. I know it's personal but....does this low dose require a med for constipation?

Thanks!

[Rustsmith]

does this low dose require a med for constipation?

I cannot help you with detailed info on buprenorphine, but I can tell you that constipation is a side effect common to all of the opioids. The med works on receptors in the colon that are similar to the ones that cause issues in our brains. Many find that softeners or low dose laxatives are all that is required.

[IndyRPh]

I had surgery years ago for a herniated cervical disk.
The surgeon also cleaned out some stenosis, and my RLS did improve for several months after that. I agree there is some connection between spinal stenosis and RLS.

[debbluebird]

I should have said, that I also have spinal stenosis. I had surgery for it in 2003. In 2018 they added hardware for Spondylosis, on L3, 4 and 5. So my back is a mess. I also have 4 Herniated discs, spinched nerves and osteoarthritis.
All of this has caused my RLS. Starting in 1990.

[badnights]

Deb, I don't understand the size of the pill you're taking. Is it the same as mine? Is mine also a "film"? Is 1/4 of that pill then 1/2mg ? If so then you started with 1/2 mg twice and have since bumped it up to 1mg twice? And how long did you try the first dose before you bumped it up to 2mg?

Deb takes a film, not a pill. It's a formulation of buprenorphine that looks like a tiny sheet or film. It's placed in the cheek, where it slowly dissolves and is absorbed.

[debbluebird]

As stated above, my buprenorphine is a film, not a pill. It comes in 2 mg. I cut it in half and take one half in am and the other half in pm. I increased in over a few months from when I first started. I think it's been almost 2 years now. My RLS is mostly gone. Once in awhile I'll feel it. Last one was Nov 3rd. Before that, Sept 10th.

[Stainless]

FDA has a warning out about buprenorphine (and others) being detrimental to your teeth. Has anyone experienced that?

[ViewsAskew]

FDA has a warning out about buprenorphine (and others) being detrimental to your teeth. Has anyone experienced that?

They have specific guidelines on how to use it - and there is a special toothpaste that I have heard your dentist can prescribe. I didn't use it long enough to know if there were problems.

[buglegs]

The U.S. Food and Drug Administration (FDA) is warning that dental problems have been reported with medicines containing buprenorphine that are dissolved in the mouth. The dental problems, including tooth decay, cavities, oral infections, and loss of teeth, can be serious and have been reported even in patients with no history of dental issues. A few years ago I was taking buprenorphine for lower back problems after failure of (2) spinal stimulators.. I was prescribed the "Belbuca Patch" that dissolves between the cheek and gum, work great for about 2-years, didn't have to take any type of dopamine agonist during this period for RLS, almost like I never had RLS and it controlled my back pain. The problem: Always in a zombie like state just laying in bed, depressed, withdrawn from everyone and everything, no life in me just gloom and doom...After taking this killer drug for 2-years I started having serious side effects such as panic attacks, depression, anxiety, claustrophobia, stomach problems but never had any dental problems but I'm sure that would have come eventually but I got off that medication altogether, rough withdrawals and had to restart taking Requip for my RLS until stopping that this past April 2024. I guess it boils down to whether its worth the problems or risk vs enduring or finding other means of relief...but yes I believe it will eventually cause dental problems.