RLS episode after Spinal Surgery

[HeBgBgirl]

I’ve had RLS since 1995. Although I feel it was dormant all my life Bc I used to flail my arms & kick my legs as a child when I slept! Shared bed with sister it was a family joke she’d say I beat her up last night lol! Ha I just thank God it waited to show its ugly face! It came out after giving birth twice. Then 2 surgeries! It really hit me!! Traumas to body obviously brings it out! Found a great specialist approximately 2004? who I always say gave me my life back! Fast forward 6/21 I had a spinal fusion was brought to my room once there RLS kicked in! The nurses knew “of” it but didn’t know what to do! I had a extremely violent episode starting at 3:30pm they finally got it under control after midnight!! Mind u I was not supposed to twist, bend etc which is exactly what I did! It was the worst experience I’ve ever had! Yelling etc God help me etc. I believe around midnight they gave me a shot of Ativan. Earlier they gave me my pramipexole n tizanadine which the latter only canceled out the first! All my iVs came out not once but twice!! They needed to get back in for pain pump ( my veins not good) plus I couldn’t stay still!! I was beside myself! 3 days later it happened again! As I was wheeled down for X-rays! Again I couldn’t stand still! Again it was 3:30!! Btw that’s when it would come out at times when I was picking up my kids from school! Hence my username! Daughter would say mommy has the heebeegeebees!! Lol ya can’t make this stuff up!!! My surgeon never came to see me! Only his attending Dr! You would think he’d b concerned even if not for me but for what I may have done to my surgery!! Next day they said I could go home. I saw my Dr pass my room twice! However he never bothered to come in!! Can you imagine how I felt?? I’m so upset by this. Today I see him post op! I will tell him exactly how I feel! So I learned on this site it could have been the anti nausea med the anesthesiologist gave me. I will b investigating. I am so sore from these severe & violent episodes. Never had I experienced an episode of that magnitude in all the 25 years I’ve had it!! I’d rather give birth tens times!! My husband thought they were gonna put me in a straight jacket!! One of the nurses was visibly shaken bc she couldn’t help & didn’t know how, that she had to leave room in tears btw!! This should never happen to anyone! Doctors need to educate themselves about RLS etc!! So when a patient has RLS they should have a wrist band just like they do if your allergic to any meds so anesthesiologist knows!!! But I digress I pray it never ever happens again! To me or anyone!!! RLS is what I call a silent and violent demon!! Surgeons need to take it seriously and get educated it is unconscionable to me they are not!!

[Madlegs1]

Some medication obviously set you off.It's surprising that the painkillers, post op, did not stop any RLS going.

I had similar surgery, and was on fentanyl post op. It was only when I tried to get off the fentanyl , that I got real bad RLS.

Back on opiates now for pain and rls control.

[HeBgBgirl in reply to Madlegs1]

My meds probably were not strong enough not to mention I had IV with pump button that was if I remember correctly dilaudid? I assume it just didn’t respond to me! So I am really just dumbfounded and want to know? Is it the anti nausea meds?? Or did they shake up something else in my nervous system??? To your other point, I do know anytime u are lowering dosage of any pain med you will trigger RLS. Even In people that don’t have it. It is a side effect of withdrawal.

[Joolsg]

Anti nausea meds trigger RLS. The US RLS foundation has medical alert cards that list all the meds to avoid, especially if you're having surgery. I see you're in the USA. RLS UK ( which runs this site) is running a campaign to get RLS taught to doctors so this doesn't happen.I'm so sorry that you had to suffer this. It just proves how lack of education can have serious consequences for us.

[HeBgBgirl in reply to Joolsg]

Well I couldn’t have said it any better!! Thank you for giving me this information. I mentioned alert bands etc to my doctor he just looked at me!! Like yeah ok! He did thank me for enlightening him about RLS said he heard of it but didn’t know enough about it!! Never had a patient like me before!! Which really amazed me! Guess I was the one in a million lucky one!! Hahaha NOT! Where do I find information on the US campaign? I really want to make sure this happens so no one ever has to suffer the way I did!!! Thank you again 🙏

[Joolsg in reply to HeBgBgirl]

The campaign is here in the UK. In the USA, the rls foundation runs webinars and issues alert cards to members. It costs $35 a year and is money well spent as it funds research in the USA.You can join at

rls.org/

The webinars are really useful and the top US experts like Dr. Buchfuhrer, ondie, Winkelman and Earley regularly feature. The quarterly mag also includes help groups in most states where you can get recommendations about good RLS doctors and neurologists.

[HeBgBgirl in reply to Joolsg]

Thanks for info, I now recall seeing that in the RLS site. I used to see Dr Arthur Walters at the JFK NeuroScience center in Edison NJ over 10 yrs ago! He did many sleep studies etc and tried different meds I finally responded to the pramipexole. He is part of reason also that i started on pain med. I had had 2 cervical surgeries , first they went in from back and all I got was a 10” scar! Second (different doctor)they did a C4/5 fusion in 2002, while recovering I was on pain meds, noticed when I started getting RLS if I took pain medication it stopped! I thought oh it’s just in my mind!! Lol NOT! He (Dr Walters ) explained that it is unconventional however he had done much research etc and in fact they do relieve the RLS !! I have been on them ever since although after another 10 yrs my arthritis( psoriatic, rheumatoid, ankylosing & osteo) got the better of me!! Had ever pain management shot, nerve root burns, etc etc for years!! Finally had a double knee replacement in 2017. Now I am recovering from an L4/5 spinal fusion. To get back quickly to Dr A Walters he left NJ a while ago to work at the Vanderbilt Institute in Tennessee, I really want to try to get a tele med appointment with him to talk about the surgery and the two episodes I had post op and what his thoughts are. Is it the anti nausea meds or ??! Sorry about long post, so I digress , my point and worry is this bc of all the BS with pain medication now, we as pain patients, RLS patients, cancer or whatever are all now being basically punished!! I was living a normal life up until December 2019 when they started lowering my meds!! First time it was by half! I was going insane! My pain management dr all they care about is giving you those shots how many can they book in a day!!! I kid you not! I’m so scared for two reasons they now want to wean me totally off my pain meds! I didn’t even start physical therapy yet for my back surgery!! So 1) my RLS will come back with a vengeance I know this do it’s like I’m going to go back in time! 2) my pain even without the surgery on a daily basis is usually a 5/6!! I just want to live the rest of my life without either! Why can’t they leave us alone!! Go after the criminal aspect of the opioid crisis!!! I digress again…. Bc that’s a whole new post!! Have a wonderful day peeps!❤️🥰

[Joolsg in reply to HeBgBgirl]

I totally agree. The US foundation is fighting to ensure opioids are still prescribed to RLS patients. Good luck.

[HeBgBgirl in reply to Joolsg]

I’m confused? US Foundation? I know there is a few advocacy groups fighting for chronic pain patients. It doesn’t seem like anything is happening?!?

[Joolsg in reply to HeBgBgirl]

The US rls foundation campaigns regularly in Washington to make sure opioids are not withdrawn from RLS patients. They've funded the Opioid Study by Dr. Winkelman at Massachussetts General to provide evidence that low dose opioids are safe and effective for RLS and don't cause addiction and the dose is rarely increased. However, there is clearly a long way to go because US doctors are still reluctant to prescribe opioids.

The UK is another matter! Those of us on low dose opioids have had to fight tooth and nail to get them after other meds have failed.

Prof. Chaudhuri at King's College hospital has agreed to do medical trials on the effectiveness of Buprenorphine for RLS if I can raise £100,000.

So now I'm trying to find funding sources and writing to drug companies to find the money.

[HeBgBgirl in reply to Joolsg]

Well I wish you the best of luck! Do they have “Go Fund Me?” In UK? That was probably a dumb question! It’s an online way to raise $$ . Especially if your cause is medical, I would think? Plus if you did get some medical doctors etc to endorse the Go Fund Me.

[Joolsg in reply to HeBgBgirl]

We do have Go Fund Me but I would prefer funding from official sources first. I wish doctors would support it but doubt they'll put their names to crowd funding sites. I suspect it will take quite a while but I will keep at it.

First step is to persuade UK doctors to teach it & accept it's a very real, serious neurological disease.

[Munroist]

For me nerve damage caused an increase in RLS. Like you I was a restless sleeper as a child and very occasionally RLS would wake me up and stop me getting back to sleep, normally after exercise. However it was never much more than that, even into my 50s when I had a back problem which left me with some nerve issues and at that point the RLS kicked in much more frequently and became the problem is today. Maybe the operation aggravated some nerves?

[HeBgBgirl in reply to Munroist]

Absolutely a possibility. I am now 4 months post op L4/5 fusion. My feet have so much pain and discomfort, even bf surgery but now worse. I really hope I find a doctor to help with my feet!!! I was going to get acupuncture but of course our Horizon Blue Cross insurance doesn’t cover!!! I guess $2500.00 monthly just doesn’t pay enough!! I’m so sick of it all

[HeBgBgirl]

Hi all Nightwalkers! Just an update it will be 1 year on June 21, 2022 since my L4/5 fusion. I feel like I’m fighting an uphill battle. I feel like surgeon definitely awoke a sleeping giant (The RLS Demon) bc I am now having episodes at least 3/4 x a week!! They no nothing about RLS here!! I have also been telling my surgeon that my pain is now on my right side flank area around hip and abdomen (before surgery it had started on my left lower back and groin in 2004) I went for an EMG which came back ok. 🤨 I don’t trust the doctors on this! They know each other!! Anyway surgeon eluded that pain is not from his surgery!! That it could be something entirely different, like kidney or… so my primary care provider ordered a pelvic abdominal ultrasound.,, you guessed it that to was normal? On top of the fact a new podiatrist telling me I absolutely had NO arthritis in my feet!! Said it’s venous insufficiency. So I have those tests done all negative! I am going to lose my mind! It reminds me of back in 1995 I started getting the Heebeegeebees at night when getting up to feed baby. I thought I was going crazy. Of course no one knew about RLS back then. Therapist told me it was a symptom of fibromyalgia. I’m sorry for jumping around on my post I’m just so frustrated. I can’t wear shoes, I can’t stand or walk for more then 30 minutes without paying for it, my back feels like I had no surgery. Oh and surgeon ordered more Aqua therapy bc the original 3x weekly for 4 weeks wasn’t enough!! So I’m back at it! Starting over basically with therapy. When will this craziness end? I want my life back what’s left of it. I’m 58 I want to be able to enjoy things again. My family n friends and my garden!! From the looks of everything it’s not looking good!

Pain management doctor is useless excuse of a doctor!! Gave me an epidural for my C4/5/6 fusion (2002) tried using a catheter at T1 hits scar tissue hurt like all get out! While in recovery my entire left arm started getting electric shocks. That wouldn’t quit. Dr said never happened before!! Of course! Nothing she did let’s move on!!! This electric shock lasted off and on for over a week. Now my arm & hand are strangely sensitive to touch . Someone please give me something?? Has this happened to anyone? Omg I need to digress I’m all over the place.

I just needed to get it out and “tag” all you fellow night crawling friends are it!!!

Thank you for taking time to read my long winded post friends.