I spent most of Thursday night walking around the house downstairs. I couldn't stay still in bed, it was a weird sensation but I just had to keep moving, then to add to the mix my back was spasming, I tried deep breathing through my nose then letting my breath out through my mouth hoping it'd relax me enough but it was quite distressing.I felt as if I had no control over my body I just had to move.
Last night I took 2 sleeping tablets on top of the Oxycodone, Duloxetine, Amitriptyline etc that I have and I slept well
But has anyone else had this happen to them, and does anyone know why it happens?
It was ghastly and I hope it never happens again!!
But if it does I'd be glad to hear of other folks experience and if anything helped make it go away.
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CinnamonRose
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I get restless legs sometimes, usually coinciding with being extra tired. I've read that being low in magnesium can cause it, in which case a magnesium supplement at bedtime may help.
I get a bit of restless syndrome in the evenings and in addition to magnesium capsules, I use a magnesium spray on my legs. It's from Harrogate Organics. It works for me.
Raising ferritin levels can help greatly. Ask your gp for a blood test to find out if it is low. You may well find that it is. rls-uk.org/_files/ugd/b0a19...
There is also a help forum - link to this is on the charity website: rls-uk.org
If you have Restless Leg Syndrome as I do join the group on here for all the information you need. Amitriptyline triggers restless legs for many people including me. As does Duloxitine. Trazadone or Welbutrin are alternatives that don't. Stop taking them to see if your symptoms disappear. Get your iron levels checked.Fast beforehand.Your serum ferritin level needs to be 100 or above. This may improve your symptoms. If not you may need medication. Don't take any dopamine agonists if your doctor suggests them e.g. ropinerole or pramipexole.Most GPS know nothing about rls and are unaware that these drugs make symptoms worse over time,causing augmentation. Gabapentin or pregabalin are good options or a low dose opioid. I see you take oxycodone. Without the other triggering drugs this should help if you have rls.
I've been on both Pregabaline and Gabapentine and still have some left over but the Duloxetine suits me better. It stopped shooting pains down the front of my legs.
I'll get a blood test
I've been on Amitriptyline for years for LS if I don't take it I get up to go to the loo constantly during the night🤷
Unfortunately, Restless Legs syndrome (RLS) is quite common but lacks research. The best product to eliminate it on a nightly basis is Sifrol, a German pharmaceutical that WILL prevent it from coming on at night if you take it about three hours before going to bed. You need to adjust the amount to the minimum that works for you. There is no cure. You might be able to reduce the quantity over time. Trial-and-error.
Sifrol and all dopamine agonists have been discredited by experts as a treatment for RLS.Although they work initially they eventually cause terrible problems with augmentation where symptoms get worse and worse.
Sorry, that's absolute nonsense. I've been taking Sifrol for 18 years and I've been able to REDUCE my intake over that time. The last part of your comment is pure invention. If by "augmentation" you mean addiction or dependence, you are simply wrong. The only time I have trouble with it is if I forget to take it (maybe twice a year). Then the RLS comes back that night with a vengeance.
It really isn't nonsense.Some people like you can take it for years.Most people augment.Which means symptoms worsen,occurring in other parts of the body and throughout the day. Join the RLS forum on here and listen to people's horrendous experiences.
If what you say is true, the people you refer to don't have RLS. They have some other nerve-related condition. There are plenty of those. It's very easy to misdiagnose RLS.
I identify with you. I’ve had rls for years. years - progressively worse…. My method of coping is to accept, and try not to focus on it. I do find it worse when I’m tired at the end of the day.
you don’t say if you are on a particular osteoporosis medication (unless I missed it I missed it?).
I stopped taking AA in May after I did the most recent fractures, I'd taken it every week for over 4 years and it obviously didn't work, I had to stop taking it as I've to take morphine 1st thing so I can get out of bed!!I'm having Zolendronic Acid infusion on 6 th Dec
I take Calceos, Vit k and Lambert's professional multi vits and minerals
I've had restless leg on and off for years. I've started having it again recently after being prescribed statins so I've stopped taking them. Try to eat a banana everyday, I believe it's a lack of magnesium. Good luck.
Apologies Cinnamon Rose, a banana a day is good for the condition but as I was peeling carrots just now I remembered it's because it contains potassium ! 🤔
Have you stopped or reduced any medication you were taking? I reduced my morning Pregablin from 100mg to 50mg and had bad restless legs. I found putting a heat pad on them helps. I had them before (can't remember why) and I stood in the shower a ran cold water on my legs for a few minutes which also helped.
No, I'd changed from Gabapentine to Pregabalin with no problems then was swapped over to Duloxetine which is really good, I feel loads better on it. I've got Oxycet to take when the pains really bad, the Oxycodone is the slow release 12 HR and depending what I'm doing I have to top it up.
I can't complain about the care at RUH, the pain clinic is really good other than I've never seen a rheumatologist in person.
It's ghastly isn't it, I can only imagine it happens when the body relaxes, thankfully taking sleeping tablets helped but I can't take them every nightI've got spinal injections in Wednesday so I'll mention it to them
Hope that helps you. I found amitriptyline helped in relaxing back and easing spasms. Horrid feeling and totally involuntary. Do post again about them if you find out what’s causing them and how to stop them!!
We wanted to drop by to wish you a very warm welcome to the community, thank you for sharing with us here
It sounds like it was a very difficult and unpleasant Thursday night, and it's understandable to want to prevent a similar experience happening again! We don't have information on this topic, but would recommend reaching out to your GP for further support around this.
We really hope you can continue to connect and share
*As a note to our valued members, we would also ask everyone to be mindful when sharing experiences to not give direct medical advice as per our community guidelines, and as this can really add to feelings of confusion and distress: healthunlocked.com/boneheal...
Hi. Very interested to read this thread - I have RLS - well I assume it is but never been diagnosed- when it happens it comes regularly along at 8:30pm for weeks at a time, as I’m sitting down, and stays there for half an hour or so. It happens wherever I am at that time - in my living room watching tv, on a plane, in the theatre, in the car (although not when I’m driving - only as a passenger) and as you say it’s the oddest feeling - like something deep inside the foot or leg, it’s hard to know where exactly, is squirming. There is no point I can press and say ‘it’s here’. It starts off deep inside and ends up with my left leg jerking uncontrollably. I have also tried deep breathing with varying success. I do get up and stretch which seems to help, and oddly if I go to bed when it’s happening it doesn’t happen in bed lying down! I’ve tried potassium as in bananas and I take magnesium… I hope you get some relief from what has been suggested here. Just know you are not alone in this - it is a real thing.
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