RLS driving me mad

I have suffered fir ten years now and find older I get the worse it gets 67 now my pain constant put me on 5 miles of Oxynorm but it's not working now,find that my arms are just as bad as the legs.

I also take liquid ketamine for pain and this helps but don't like to take it every night as it upsets the tummy too much.i was on gabapentin up until ten years ago and didn't have a problem wit RLS then but was given to me for pain think I better ask to be put back on it as I can't stand all this lack of sleep.

22 Replies

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  • If you're in the US, you can now get gabapentin enacarbil ( Horizant) which is much better for RLS. 2 meds at low doses are often more effective than one.

    Hope the gabapentin helps.

  • I was recently put on Gabapentin, & it works for the RLS well. But I'm still up at night because I can't sleep. Seems I sleep for 1 or 2 hrs. but then I wake up & can't get back to sleep. Anyone else experience this ? If so what is the answer on how to get back to sleep ?

  • P.S. to my last post...Has anyone noticed if you eat something while you're up w RLS, it seems to help ? Not good for the waistline though !

  • Eat carrots or celery.thats okay it's just form of occupying brain I make cup tea and clean when it's wore off I go back to bed

  • Yes! I wonder why this is? I wonder if it has anything to do with bloodflow?

  • I think you're right.It has got to be because your body is then concentrating on digesting the food we just ate. Now why that would be, who knows ?! But I wish that could be a clue to help figure this thing out for a doctor who could then solve our issues.

  • I take Mirepex for RLS and rarely sleep a full night. Like you I just want to walk and nibble on food. Not good. I wish I had a answer, but sadly I don't.

  • That was happening to me too but then my doc told me to take my gabapentin about 3 hrs before I go to bed. Also he said don't go to bed until very sleepy (not just very tired.) I also started taking my magnesium at lunchtime instead of bedtime and found that helps too.

  • Ketamine!! I take it you don't get that from the Dr :) . What sort of doses do you take on that? I tried Methoxetamine which is in the same class as Ketamine but it didn't seem overly useful for the legs, it was grand but the high, although enjoyable meant I couldn't use it often.

    Regarding the Oxy, unfortunately no mater what drug we take they will loose efficacy in time and the dose will have to be increase, its our bodies normal response to work against what we put in it to gain homoeostasis. Mind you if you are taking MILES of the stuff it could be too much :) :p

    If I were you I'd consider going back to the Gabapentin if it worked and you weren't getting the side-effects and save the Ketamine for 'special' occasions.

    Take care.

  • Ketamine is now being seen as a possible "cure" for depression.

  • Oh yeah, I've done some reading on it, also, many illicit drugs are actually very valuable medications. Psilocybin can be used for Cluster headaches, MDMA for couples therapy, LSD/Ibogaine for addictions.

    Its unfortunate that the buddies of big pharma, (politicians) keep these wonderful drugs illegal so their mates can make a fortune selling their drugs with all their side-effects and limited efficacy.

    One thing I will say about Ketamine is that it can cause bladder/urinary problems if used regularly, (MXE was designed to emulate it but without the problems) so use wisely.

  • I only take it occasionally but mainly for neuropathic pain

  • I get the ketamine from the pain consultant for neuropathic pain so not taking it all the time but she told me to try oxinorm at 5 mills but not working anymore had no sleep for two days now.

  • Hi Conifer,

    There is some research on oral ketamine as a promising treatment for RLS.

    researchgate.net/publicatio...

    How much do you take?

    Where do you buy it from?

    Have you noticed any other side effects apart from stomach problems?

  • Hi I take 5 mils but I get it on proscription from my doctor as I suffer from neuropathic pain now and again, the other side effects are just fuzzy feeling nothing bad

  • It is a Maddening disease. I call it a disease because anything that causes us to not be at ease is a dis..... I have been at the end of my rope several times and would have done something bad if I didn't have this large family that I don't want to leave the legacy of self distruction. If a patriarch commits suicide then every younger person sees that as the solution to large problem.

    When all else fails and they won't stop moving, burning, hurting, seemingly sending a signal of hate to the rest of my body, I use opiates to get it to stop.

    Opiates are not a long term solution, but can let you get a few hours sleep, so that sleep deprivation won't cause you to either become addicted to something solid or liquid. I then go back to the meds a doctor gave me, until they don't work any more.

    I have found most doctors are use less. Not intentional, but mostly useless. I stay with them because they have th prescription pad.

    We are strong people and strong people endure so my advice to you is when it gets so rough you are going mad, ue opiates for one nights sleep and then endure.

  • Thanks for that and I know what you mean it may sound mad but I am better in a way when my neuropathic pain starts as I have such a large variation of pain killers that it masks the RLS then the pain gets bad and I can't sleep anyway.

    I am trying two of my sulperdol tablets tonight see if that works as the Oxynorm is not working anymore.

  • I would just like to suggest that there is a diet solution that might help. Search for FODMAP and Low Chemical diets. Both are exclusion diets but they exclude different things. The advantage is that if it works for you then there are no side effects and you feel terrific. They are also cheap, no evil Big Pharma is trying to make a huge profit from them.

    I have also found a new advantage. If I stick to the diet for some time I can decide to "take a night off" and eat anything I want. Hang the diet. Go back on the diet next day and I dont even lose a night's sleep. I experimented with pushing past the one day until the RLS came bouncing back. I was relieved when two days back on the diet restored my health and I had no more RLS. I had 12 hours sleep that night. It is very comforting to know you can come back if you re-activate the diet.

    If you give it a go I hope you are one of the lucky ones.

    Graham

  • Hi Conifer! Lack of sleep is awful, isn't it?! I am so tired of waking up day after day as if I didn't sleep. Have you tried rubbing magnesium oil on your arms and legs? I get awful pain in my legs, so I rub the oil on them. It works miracles! Since there is a suspected link between RLS and magnesium deficiency I would suggest trying this. Hope this helps!

  • Hi Jess thanks for that I will get some and try it.

  • Hi sorry to hear of your symptoms worsening. We did a lot of research into RLS a few years back when I became aware of my husband's symptoms at night time. During the middle of the night his legs would start jerking, so much so that I thought he must have been dreaming of running a marathon, or running away. After investigating, we started with the Epsom salt baths and had some relief. Epsom salts are form of magnesium. By taking magnesium citrate instead my husband has had consistent long term relief from within about 10 days of taking the magnesium last thing at night. He takes 200mg to 400mg every night and has done so for over 3 years. Magnesium also helps with getting a good night sleep. Both of us take it now and it totally lessens any aches and pains one gets on wakening. Hope this is of help to you.

  • Thanks so much for that I will give it a try

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