Being new to this forum I am hoping to get some great advice. I have had RLS on and off for as long as I can remember. Recently I was forced to retire my position in a major symphony orchestra which I held for 37 years. When I say injury I really mean wear and tear on my spine from all the years of rehearsals and performances, to say nothing of all the years spent in a practice room. During the last couple of years when the pain was worsening, eventually making it impossible for me to play my instrument (double bass), I noticed my RLS getting worse concomitantly. I know from RMIs that my lumbar spine has a plethora of conditions such as stenosis, arthritis and bulging disks. The pain I can live with, the RLS I can not. I have always heard that RLS starts in the brain. But can injury to nerves which control leg movement exacerbate RLS? I look forward to hearing any replies.
RLS worse after lumbar spine injury - Restless Legs Syn...
RLS worse after lumbar spine injury
Hi WMW850, hello and welcome. If you can't find an answer here then there isn't one!!!
First of all - what way were you playing with the double bass, were you juggling them? 
Seriously though my heart goes out to you loosing a career/passion like that. I too lost my job due to ill health and it was a terrible insult to the injury of illness.
There are a number of theories around the causes of RLS not all of which centre on the brain - inflammation and diet are both linked to it.
I am 100% with you about being able to live with pain but not the RLS - I have a number of damaged discs and the pain is minor compared to the RLS.
OK, deep breath...and....
1) Diet - easiest thing (except for chocolate 
) to change - people have found sugar, alcohol, gluten and caffeine as responsible for increasing symptoms - gluten is a no no for me.
2) Avoid certain drugs - most antidepressants, antihistamines and various other drugs exacerbate RLS. You may have been prescribed Amitriptyline for pain but it can be a real b*****d on RLS imho. If you are on any of these drugs you may need to talk with your GP about alternatives.
3) Take extra iron - of course too much iron isn't good for you but many on here including myself take gentle iron in the evening to help, and it does.
4) DRUGS - AND LOADS OF THEM!! I say this because there are many that are now used and licenced for use. I am a big fan of opiates they work great for RLS and have the bonus of working on y pain issues too. Many are fearful of becoming addicted - mistaking addiction for dependence - and many Drs are fearful of this too so they can be hard to get however, used correctly they shouldn't cause any issues.
Dopamine agonists are often used but these are a much more serious type of drug with very serious side-effects - use with caution and I always think make another aware you are taking them so they can keep an eye out for personality changes!
Gabapentin/Pregabalin are similar drugs that can be used for both pain and RLS - so you get both benefits. Many are not happy with those drugs as they have a lot of very serious side effects too.
Benzodiazapines - many Drs seem to prescribe these addictive drugs (yet shy away from opioids on grounds of addiction - go figure!). I find all they do is leave me sedated with RLS and too tired to move to alleviate the symptoms.
Cannabis - great drug for quick relief, a quite safe drug - no overdose and is neuroprotective so could be beneficial that way. Of course it has its dangers - most noticeable its legal status - the most harmful effects of cannabis is involvement with criminals to access it and police when you do!! If you can use it safely go for it.
Kratom - a plant that although not an opioid as such works on the opioid receptors. Legality can be an issue depending where you are but again safe as in no overdose and little addiction potential - many use it to come off the likes of heroin. There is a good thread here:
healthunlocked.com/rlsuk/po...
5) Heat. Hot baths, showers and hot water bottles all help...but not for long. At one stage I was taking more than 6 baths/showers a day. I still had RLS but smelt great
6) Stretching and GENTLE exercise. Yoga stretches help and so does gentle exercise - but not too late in the day.
7) Distraction. Unfortunately distraction only works for the duration of the activity but at least there is relief then If you like to read but can't sit still try walking in largish circles or listen to audiobooks. Do whatever you can do to take your mind off things - play the double bass (not juggle) or learn a new instrument, I am teaching myself the drums and can manage a great distraction when I am trying to get my 4 limbs moving interdependently and the movement helps also.
8) SEX and loads of it. It wouldn't be me with out mentioning sex! It distracts, the movement helps and the body produces its own pain drugs which can ease things. If you have no partner - masturbation works - but not as well, but its better than nothing (although that's not what I tell my wife 
).
9) Go to the loo. There are a number of us on here who have found taking a pee very helpful, giving immediate relief. There appears to be a link with the vagus nerve which is involved in peeing and pooing, among many other things, and a trip to the loo can help.
OK that's all I have at present. There will be others along with more advice too. Hope that helps and starts you in the right direction of relief.
Take care.
I am reposting this bc it seems to be in same category as wmw850. I’m hoping Hidden reads it! Would love to get his perspective!! I am suffering almost every night with RLS since surgery 6/21/21. Sometimes it starts in my butt, feet or very near my fusion site L4/5.
My feet are unbearable with pain also since surgery. My gait is off. I’m beside myself. 😢🥺. I am only 58 I can’t do anything with out paying for it! Whether it’s pain and now RLS exacerbated! Like poster said you can live with pain bc your so used to it ( although some days it’s unbearable) but the evil RLS demon is really unbearable! I can’t handle it like I used to when younger. Pain management doctor is useless! Refuses to give me any more pills. I am on lowest amount allowed by USA rules?!? I’ve been taking more when the RLS is at its worst! Because YES opiates are a Godsend for RLS. I’ve been on since early 2000s. And I was at a comfortable dose when shit hit fan here in NJ n I guess all over! Some idiot decided that chronic pain is a non issue and add RLS and whatever else… and bam we are all suffering!! Doctors are afraid to prescribe let alone give you more so you can live a half way normal life!! I am so tired of feeling this way. I wish someone could help us!! I digress bc I could go on and on….
Good luck wmw850
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 I silent and violent demon!! In the last 5 years I’ve had a double knee replacement, a lymph node removed from my right groin, and in June 2021 an L4/5 fusion. ( had C4/5/6 fusion in January 2002). I have some crazy serious pain in my lower right side that when I take a step with my right foot it just radiates all over that area hip, groin, abdomen, flank , and foot!! Both my feet get swollen. I have a lump on right foot action toe area gets crampy? I don’t know!! Been to vascular to check for venous insufficiency for feet, podiatrists.( no arthritis says one another says yes arthritis in feet!!!) was diagnosed with osteoarthritis, ankylosing spondylitis etc. I don’t know if I believe anything these doctors tell me anymore!!!
All I know is I’m 58 can’t wear shoes can barely walk stand sit with out pain!!!
This fusion killed me!
Hi, you need an accurate diagnosis then you stand a chance of getting appropriate treatment. Can you get to a world class medical center like Mayo in Minnesota? The pain you’re having when stepping sounds like the source is this: mayfieldclinic.com/pe-sijoi...
The pain in your feet which began following your fusion sounds like nerve injury which there are so many of in the area of your fusion. Nerves heal slowly and can take up to 3 years - so I have heard. Pain travels, especially nerve pain. So you can feel it in your feet even though injury is in lumbar region. In terms of the edema my guess is that it is from lack of movement. The edema can add to the pain or possibly be the soul cause. Is “chronic” gout a possibility…triggered by surgery, dehydration? Has any doctor prescribed a trial of prednisone to see if that helps your feet?
I’m not sure what that lump is on your foot - did they give it a name …Morton’s Neuroma? I have two little neuromas. I have to wear gel toe separators when wearing shoes. I wear one between big toe and second then between second and third. It completely relieves that crampy sometimes zinging pain.
In terms of RLS I am a one trick pony. I take 25 to 50mg of ferrous bisglycinate an hour before bed on an empty stomach. It relieves the RLS in one hour. Must be repeated every night. It’s also a good idea not to eat anything after your evening meal. Night time snacking can trigger or worsen symptoms of RLS. Fasting is better.
Yes there is a link with spinal injury. I have spinal cord lesions caused by MS and as a result have severe RLS.
Research hasn’t yet established why spinal injury worsens RLS but if you research it, there is a clear link between spinal injuries and operations and RLS.
There seem to be many causes or triggers for RLS ( kidney disease, spinal injury, anaemia, anti depressants, anti histamines) but they all produce the same unbearable sensations.
Check that you’re not taking any meds that might worsen it and check your serum ferritin levels. Osteopathy and physio rehab may relieve symptoms.
You may be able to resolve it without medication.
Wow, raffs has surpassed himself with all things RLS!
A good overview of things to do.
Yes there is a relationship between issues with the spine (neuropathy) and RLS.
It's a matter of oversensitivity or excitability of motor nerves.
I have some spinal degeneration, narrowed intervertebral spaces, a bulging disk etc. I have both nerve pain and RLS and whereas there may be lots of things I could do, that raffs and jools mention, I'm both lazy and lucky, I just take gabapentin.
Lucky because as it desensitises nerves it helps with both my nerve pain and my RLS with minimal side effects.
Sadly, everyone's different, so you may have to try a few things.
I wish I could play a musical instrument, I never learned.
Jesus Manerva! I just want to say I am so sorry to hear of your death. I hope it wasn't traumatic and that you had love in your heart when you left this mortal coil.
May you finally rest in peace!
?? What are you saying?!
Well Manerva says:
'I wish I could play a musical instrument, I never learned.'
Manevra never learned and gives the impression he/she (sorry Manerva I keep forgetting - blame the RLS & ME) can not learn an instrument. The only things that can stop you learning some thing like that is being in prison (I know he/she isn't there); having severe learning difficulties (I know that they haven't that) and lacking any money whatsoever - you can buy a tin whistle for less than £5 - so Manerva can scrape that together; and finally death will prevent you learning. If he/she is not in prison, hasn't a severe learning disability and isn't destitute then he/she must be dead!
PS, just in case of any misunderstanding
"Wow, raffs has surpassed himself with all things RLS!"
was meant to be positive not negative.. You gave an excellent overview.
Can I be resurrected?
Have I died?
I didn't notice. No trauma then.
Lots of time then to learn harp playing
I may come back to haunt you.
Who died?? I didn't know ghosts could type.🤣
(Hi Manerva, guess who I am?)
I'm not typing, I'm using a ouija board.
Do they have them in Norway?
Crap, you're good!😂
I'm not sure; I've never used one.
Thanks for the complement, gladly taken.
The point I was trying to make is you are still able to learn some instrument, maybe not to virtuoso level but probably enough to give you pleasure if not joy.
I am tired trying to impress upon my kids the importance of learning an instrument, especially when you are young and how it can be a great solace in hard times and a great companion in the good ones. With the amount of content online for free you can learn LOADS without breaking the bank either.
There is abundant evidence that playing music improves our brains and well being so get your f*****g finger out Manerva and buy a bloody instrument!
Thanks for the encouragement, we actuaily have a keyboard we never use.
Well then, get all your fingers and thumbs out and start!!!
This should start you off
youtube.com/watch?v=gmvwZRw...
Good luck and happy tinkling!
Thanks raffs 😄
You can thank me in $$ when you are a famous piano player
I can give you a lot of Russian rubles.
Right I'll take 50 of them, no wait 40. Damn, make it 45 and we have a deal.
50's OK, still less than a £/$
That's not a problem, just send me the ticket to pick them up in Costa Rica too please and we'll call it a done deal.
I have always had somewhat controllable RLS, but when I developed spinal stenosis and had a laminectomy, my RLS went off the charts. Like everyone else here, I’m still looking for the right treatment. I’ve tried every known medication and avoid all the triggers. This vile disease still persists. I believe the spine issues and surgery worsened my symptoms. I have no choice but to continue to persevere. Hopefully, someday we’ll see a cure. Good luck all. 🤞🏼
Damn Nlthomp, that is a horrible condition with a horrible solution.
Can I ask are you in any pain since the operation or is it just RLS? Are you on any pain drugs? AND with serious physical health conditions often comes serious mental health issues, you aren't on any antidepressants? There are many drugs that interfere, I take it you've checked that out and the other stuff I mentioned in my first (the second) post?
I have had RLS all over my body with no control whatsoever for several months once and only get brief periods of relief now (although it is never as bad as those days thank whatever deity or programmer is over us) and I know where you are at. I'd like to help so forgive me if I'm teaching my granny how to suck eggs!
Hi Raffs,
Yes. It sucks, big time. I have been in touch with Dr. B about my current treatment plan and he said it’s “reasonable”. Getting all of the iron bloodwork next week. That will most likely result in an iron infusion. I’m currently taking pregabalin 150mg twice a day. That has helped some nights. This whole situation has brought on depression, so let’s add bupropion 100mg hcl to the list. I’m very lucky that my psychiatrist is very much aware that antidepressants aggravate RLS. He’s quite brilliant, actually. My biggest problem is cutting back on wine!! I’m used to drinking at least three glasses a day and now I can’t.... so, I surmise that RLS is really trying to wreck my life, as well as take all the fun out of it. Last night it was insane, kicking and twitching on the right side, leg and arm. That causes anxiety, so I take Tramadol. Not sure that helps because it carries on for hours.
So... what about you? Is your’s under control now? Are you taking any meds? I think you mentioned cannabis in one of your posts. Unfortunately, that’s illegal here, although some states have legalized it. Let me know how you’re doing. It’s a relief to know we’re not alone and have people to talk to. Be safe.
I do indeed use cannabis - its illegal here too but you do what you gotta do!
Sounds like you have a decent Dr, I'm lucky in that department too.
Can I ask - was the wine a nightly thing? It may be that coming off the wine is wreaking a bit of havoc with your system - other than the other dietary changes I'm out of ideas.
Is Kratom legal in your state? It can be very good if you can get your hands on it.
I haven’t really cut back on the nightly wine, yet. It’s a problem.
I just checked, and it is legal. Is there a certain type or amount you should take?
Sorry to tell you this but I think, I really think, you need to address the wine before looking at the Kratom. Alcohol is a god damn awful drug for RLS sufferers and a little alcohol puts my legs up the left.
I think that is the solution to your problem in a nutshell - as long as you favour the wine you are likely to suffer more severe RLS symptoms.
If you don't want to stop drinking (and if you don't want to stop drinking to stop the RLS then I would be thinking that is another issue all on its own) then with regards to Kratom go for the Red strains, I use Borneo. DO NOT get the extracts as they can be bad and for the love of God be careful mixing any/all drugs with alcohol.
Thanks Raffs. I hear ya. Another issue, for certain. I’m working on it. Thanks for the Kratom info. I’ll keep it in my back pocket until I get the alcohol under control.
Take care and stay safe 😊
No problem my friend, if you need any more help in any shape or form drop me a PM.
Stay frosty and I hope those legs settle soon.
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