RLS and sciatica: I have primary RLS... - Restless Legs Syn...

Restless Legs Syndrome

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RLS and sciatica

MumofSam profile image
33 Replies

I have primary RLS and have been suffering from sciatica since February. I've now had an MRI scan and found out I have stenosis of the spine plus crushed discs as well as a protruding one. Lucky me! So I'm now on the waiting list for spinal surgery. I'm lucky in that I don't often suffer from my RLS. It was much worse when I was younger but now it only seems to bother me for a couple of days a month, if that. However, that was until last week when I suffered 4 nights running to such an extent that I hardly got any sleep, what with the pain from the sciatica as well. It was horrendous. At the same time I had been trying not to take the painkiller tramadol and I'm wondering if there's any link between trying to come off it and the increase in my RLS. Since I started taking the tablets again yesterday I seem to be OK (touch wood). Does anyone know if there could be a link, or is it just coincidence? It's just so unusual for me to have RLS that bad these days. I'm only taking tramadol twice a day - two capsules in the morning and two at night - so it's not as if I'm on the full dose. My RLS was so bad I couldn't even sit in comfort in the evening, let alone lie in bed. Does anyone else have RLS and sciatica? If so, how do you cope? Thanks for any help you can give.

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33 Replies
Pippins2 profile image
Pippins2

Hi,yes I can 99%guarantee that the increase in your RLS is due to you stopping the Tramadol.Many people say their symptoms ramp up after stopping strong painkillers .I cant tell you what to do or take but as you are in pain from the sciatica and soon to be having surgery I would not try to stop the Tramadol just now.If you want to cut down on the Tramadol you could try just taking the dose late evening to help you sleep at night but miss out the morning dose, I had sciatica before my back surgery and the med that really helped me for sciatic pain was Pregablin.As this is also used as a RLS treatment that may be a med to try.Will you have to wait long for your op? Why are you wanting to stop Tramadol? ?..pipps x

MumofSam profile image
MumofSam in reply toPippins2

Hi Pipps, thanks for your reply. I have to wait 2-3 months I think. I was trying to stop the Tramadol because I was running out and was trying to make what I had last, and also don't want to get hooked on them. However, now I'm back on them I realise I can't do without them.

Kaarina profile image
KaarinaAdministrator

Hi Mum of Sam

I have had sciatica a few time, one time whilst pregnant and do suffer from RLS intermittently too. My last bout of sciatica was really bad and in the end I had injections via xray direction. That was on 9 December 2009 and since then I hav been sciatica free. Poor you with your spinal problems. I also had a spinal operation neck end because of compression on the spinal cord causing numbness/pins and needles in my arm and affecting my walking with a feeling one of my feet was dragging a little sometimes.

I found the sciatica was painful only on walking and sometimes so bad I had to stop and sit down. The only way to sometimes walk minus pain was to stoop forward but that was not a good idea to do for too long.

I wish you well with your spinal surgery and hope you do not have to wait too long.

I hear others get RLS benefit taking tramadol. Trying to stop it may be the reason your RLS is worse atm.

Kaarina

MumofSam profile image
MumofSam in reply toKaarina

Thanks Kaarina. Hopefully the wait is 2-3 months. I get numbness in my hands too, which the consultant thinks is carpal tunnel syndrome - so another thing I have to get sorted out at some stage!

Kaarina profile image
KaarinaAdministrator in reply toMumofSam

Hi Mum of Sam, scoliosis added to the mix as well for you perhaps.

Me too. I first noticed it in my teens but nothing was ever done about it, not like it is treated today. I did actually see a scoliosis specialist late last year which proved most interesting and I was glad I went to see him. He was willing to operate but there were many risks/post op problems, too many for me to wish to go forward with it. My spine would have been fused so much and never being able to put socks or shoes on again made me decide that I was not going through with it. The scoliosis is shifting and i ha e lost 5" in height but my spine is used to coping, so far, not too bad, so best left alone I think. I have always exercised and I believe that is the only reason why I am still walking around with no aids. At least since the sciatica went in 2009 I do not get much back pain only after gardening or vacuuming for example. I am thankful for small mercies! ;)

It is good the tramadol is working regarding the pain of the sciatica.

I wish you well, let us know how you go on.

Look after yourself,

Kaarina

MumofSam profile image
MumofSam in reply toKaarina

Hi Kaarina

Thankfully after the X-rays scoliosis has been ruled out. I now have a date for my op, which is 14 September, so not too much longer to wait, thank God, as the pain has really increased over the last 3 or so weeks.

Hope everything's ok with you.

Kaarina profile image
KaarinaAdministrator in reply toMumofSam

Hi MumofSam

I am ok thank you. Putting one foot in front of the other and breathing! ;) :) Great news the x-rays showed no scoliosis. I wish you well with your op. As you say, not long to wait. Do let us know how you go on.

Kaarina

MumofSam profile image
MumofSam in reply toKaarina

Thanks Kaarina, I will. Glad to hear you're OK.

steverobinson profile image
steverobinson in reply toMumofSam

i get the numbness too. had the carpal op and this made no difference. think there is a stenosa in my neck

Pippins2 profile image
Pippins2

Meant to say when you go in for your op make sure they don't go giving you anti sickness meds that will ramp up your RLS.Zofran is a safe one .

MumofSam profile image
MumofSam in reply toPippins2

Oh right, thanks for that.

I stopped Tramadol last year and it sent my RLS completely mad.

Even people who do not have RLS often have RLS from withdrawal of opiates/opioids.

If you are intent on withdrawing from Tramadol, reduce the dose slowly - I spoke with a friend who is a drug counsellor and he advised a very slow reduction reducing by say 50mg on alternate days for a couple of weeks then another 50mg on the day you hadn't reduced for a couple of weeks. I in my infinite wisdom even after our discussion decided on morning I was sick of taking tablets and stopped cold turkey - I had a horrific few weeks the RLS was up the left and the pain and insomnia left me like a zombie.

I have seen a heck of a lot of stuff online about people using Kratom to wean off opiates:

google.co.uk/search?sourcei...

Good luck.

PS - If you have been taking very large doses, (above max prescribed limits) and sometimes even at the max limit you can run the risk of seizures so please be very careful if that's the case.

MumofSam profile image
MumofSam in reply to

Thanks Raffs. I'd only been taking 2 x 50mg capsules once a day, twice at most up to stopping. However, you show my suspicions are right. It was a hellish week last week, but now I'm taking tramadol again everything's fine - it's even getting rid of most of the pain, which is a first. Don't worry, I'd never go over the prescribed dosage.

in reply toMumofSam

If used correctly its a great drug, it is unfortunate that withdrawals can be so nasty - lasting months for some.

Glad to know all is good, enjoy the rest.

Windwalker profile image
Windwalker

Those of us who have reached a certain age all have something else besides RLS. My own case started when I was in my middle thirties with siatica. I had steroid shots then and avoided all meds until I was about 45. from then to age 78 I have had many nights where I stood up and leaned against a wall to keep weight on my left leg to stop the urge to move that was so strong that if I didn't move I would have screamed in such frustration that my wife of 60 years now would have thought me crazy.

I found an interested doctor in 2002 when I was thinking about ending it all to escape the pain and craziness that comes with no sleep and constant nagging pain.

She was a professor at Northwestern Medical School in Chicago and knew something about the urge to move and pain. She diagnosed my as have in three things. Spinal stenosis which was responsible for the siatica, fibromylgia which was responsible for the random soreness and muscle pain and hereditory RLS,(because my mom and her nine sisters all had RLS along with overall body pain.

RLS seems to be connected in some way with all the above. You may not have all of them but my bet is you do. She prescribed Maripex for the involuntary movement, Neurontin for the nerve sheath pain (fibromylgia) and a small dose of Vicodin for the siciata. I have had some combination of the above since 2002. I have a bad night every now and then and slight pain down my left leg, but all and all if I take the current regime of requip time release, gabapentin at bed time along with vicodin one tablet of 5/300, I survive with no thoughts of ending it all to escape the symptoms I am sure are inherited from my mother who lived to age 91 and has only been dead about 6 years and suffered without much in the way of pain management because of a misguided view of religion. Hope this life story helps you.

MumofSam profile image
MumofSam in reply toWindwalker

Thanks Windwalker, that's very interesting and helpful. I have had RLS since birth but have never managed to find out who I inherited it from as neither of my parents exhibited it. Mind you, when I was a child it wasn't recognised that I had RLS and I only really realised that it was RLS when I was in my mid to late 40s. I'm going to make sure I keep taking tramadol now, because as well as not suffering from RLS and the resultant insomnia, it actually seems to be working at almost getting rid of the pain. Also makes me feel a bit lightheaded and sleepy, but at least it means I can sleep. My big fear is, having had the back surgery, I can't move and then the RLS kicks in. It would be total torture, as I'm sure you'll understand.

Windwalker profile image
Windwalker in reply toMumofSam

Whilst you get well from the operation, ask them to sedate you with an opiate so the brain receptors for dopamine are filled and it will keep you still. I went thru the same thing and used the method with the help of my doctor who must prescribe or write an order for whatever you need. If you are at home an oral medicine, typically Vicodin, will fill the bill. You will go thru mild withdrawal when the opiate is discontinued so expect it, but it isn't too bad.

Igiveupxyz profile image
Igiveupxyz in reply toMumofSam

I have had or RLS since I was a kid and am now 71. About two years ago I had Gall Bladder surgery and they stopped the Requip the night before which I was taking for RLS. When I awoke from the surgery, my legs started to spasm about every 10 seconds which is the reaction I get if I miss the Requip-even worse then the RL S was to begin with. You are right, it was torture because I could not rest at all. My upper body was so tired from the sedatives used for the surgery but my legs had to keep walking. Due to a misunderstanding with my doctor, she switched me to Hotizant which caused me to go through several days of depression like I have never felt before. So I think your fear is valid-you will lose your mind if you cannot move and have to suffer RLS worse than ever. Wishing you well and just be very, very sure that your doctor "gets it." Argue to stay on your anti-RLS schedule. Wishing you well.

MumofSam profile image
MumofSam in reply toIgiveupxyz

Thanks. I'll make sure I bring all of this up at my pre-op assessment in a fortnight.

geebo4 profile image
geebo4

Yes, I have sciatica and RLS and I'm going into hospital in two weeks time for a fusion operation in the lower spine to correct my spine and it's hoped the sciatica will then go away.

I suspect my condition is not connected to RLS and more to the state of my spine. However, I've discovered that by taking Dihydrocodeine 30mg tablets to control the pain in the back etc., I've been able to reduce my RLS medication. I was taking 3mg Ropinirole along with a 2mg Rotigotine Patch daily and now I can knock off the patch. It's possible that when I'm free of pain from the operation, I'll have to re-introduce the patch once again.

Hope you soon get relief from the sciatica.

MumofSam profile image
MumofSam in reply togeebo4

Thanks Geebo. Good luck with your operation. Mine will be to mainly treat the stenosis, although I think he's going to do something for the compressed disks. Should find out more on Friday when I go back to see him as I had x-rays taken last week. It would appear the consultant also thinks I might have scoliosis of the spine as well - lucky me! The tramadol does actually seem to be working for the sciatica, but when I just have back pain (they each take turns to hurt) it doesn't do a lot. Anyway, hope everything goes well for you and let me know how you get on.

APOSTLEDON profile image
APOSTLEDON

Hey! I have RLS REAL BAD ALSO..I have taken TRAMADOL but I have to take at least 4 of them @ 50 MG...And also I take METHADONE HCL 10 MG...I have to take ONE METHADONE WITH "GABAPENTINE @400Mg" AT NIGHT TO BE ABLE TO SLEEP.That is the only reason I take ANY MEDICATION AT ALL...I hate any and all...YOU HAVE TO BE CAREFUL TAKING ANY AND ALL ...../Please read any and all the LITERATURE WITH THOSE MEDICATIONS, ESPECIALLY "GABAPENTIN" and also "METHADONE"..Oh! IF YOU HAVE HAD PROBLEMS "I T C H I N G" { I DO } WITH TAKING PAIN MEDICATIONS..Have your doctor order you some "...H Y D R O X Y Z I N E HCL 25Mg., IT WILL STOP THE "ITCH"...Guaranteed

MumofSam profile image
MumofSam in reply toAPOSTLEDON

Thanks Apostledon. I'm not on any other meds, either for RLS or anything else. The tramadol isn't causing itching, just tiredness which is useful as I am no longer suffering from the RLS keeping me awake.

AnnaVic profile image
AnnaVic

Hi MumofSam, when i stopped taking tramadol (100mg x 2) prescribed for cracked ribs my occasional rls went crazy. I couldnt rest or sleep and had to keep moving. I had no idea it was anything to do with tramadol and it was by googling rls I found the connection. I have now cut down to about 30mg taken at 4pm. (I take about 20-25 tiny balls out of 50mg capsule). Apparently 50mg is lowest dosage available.I tried a couple of times not to take any and had really bad nights and had to give in and take tab in the end. Even if Im late taking med it is much harder to settle legs. I plan to just keep reducing dosage very slowly. I have arthritis in my feet and get pain from this but its totally different. Despite being skeptical I do think tonic water helps but you have to drink rather a lot. Hope you find something to help.

MumofSam profile image
MumofSam in reply toAnnaVic

Thanks Anna, I must admit of I'd known Tramadol could do this I'd have thought twice about taking it. As you say, when the time comes I'll have to reduce the very gradually. At the moment I'm taking 2 x 50mg capsules two or three times a day, mostly just twice. Hope you manage to wean yourself off without too much discomfort.

steverobinson profile image
steverobinson

I also have PLMD and Restless Legs for 35 years now . on Requip for that. over the last couple of years I have sciatica and l4/l5 spinal stenosis. a bulging disc and a disc that has moved/slipped. also a hiatus hernia. barrettes. arthritis in my hands. type 2 diabetes. i try not to take pain meds. suppose i have got used to it over the years. also have poor sleep. bit of a bummer. i no longer work and that has helped me cope.

if requip stops the spasms that should help with the pain.

help and support from the family and try and take things easy if you can.

god bless

steve

MumofSam profile image
MumofSam

Thanks Steve.

DMML profile image
DMML

I always get bad RLS when I come off tramadol.

Mysteryv profile image
Mysteryv

Hello

I too have sciatica and terrible RLS. It’s a living nightmare. I haven't had a proper nights sleep for 6 weeks now. Like you I have suffered RLS in the past but never anything like this episode now. I do note that it came on with this episode of sciatica and has been relentless. I too am wondering if there is a link. I take Mirapexine now as I am up all night if I don’t. I think it’s got worse since I’ve been taking it which is worrying me but it the only way I can sleep.

MumofSam profile image
MumofSam

Hi Mysteryv

All that was 4 years ago. It was Tramadol (and later Pregabalin) that we’re making my RLS worse if I stopped taking them. Was prescribed both, Tramadol pre-op and Pregabalin afterwards. If I’d known then what I know now I never would have taken them. It’s taken me until just a week or so ago to finally become Tramadol and Pregabalin free, and it’s been a nightmare doing it.

There is definitely a link between RLS and the lower back, I can feel it when the RLS is really kicking off.

My sleep is now totally messed up by meds withdrawal and resultant RLS. Hopefully it’ll get back to normal one day.

Possibly...Through a series of unfortunate timing I have been without my med for 2 weeks now and my RLS is off the chart tonight. Have not sleept at all. Just thrashing around all night. I May need to make a special trip to another city to refill before...monday!

Sunflowergirlem profile image
Sunflowergirlem

I have sciatica and restless legs. When my sciatica acts up,that is when my restless legs does. I have degenerative disc,as well as some similar to your back issues. I do believe the back issues causes my restless legs. Something a heating pad helps me. Or the massage gun .

MumofSam profile image
MumofSam in reply toSunflowergirlem

Gosh, that post was 9 years ago and a lot has happened since then. I’ve had RLS my entire life so it was triggered by my spinal problems. I’ve had surgery for spinal stenosis which has relieved me of most of the pain from sciatica, but not completely. My main problem now is the effects of having been on Tramadol for about 3 years, originally diagnosed for the sciatica pain. Although I fully weaned off it 5 years ago now it’s left me with far worse RLS which has spread to my lower spine, left arm and shoulder and neck. All that started happening as I was weaning off. I hoped it was temporary and caused by the reduction of Tramadol in my system but, no, 5 years later I’m still in this position. So I went from suffering RLS for a few days a month to it now being almost every night, sometimes during the day, and it spreading to other areas of my body. Wish I’d never come across Tramadol.

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