I’m going thru a really bad rough spot right now . I’ve been on opiods Codeine and Tramadol for about a year with mediocre success. I’ve been thru the augmentation with Ropinarole, don’t want to go back there. It seems that things have been gradually going downhill for me and on a friends advice I added Glycinate Magnesium and that seems to have caused more aggravation of symptoms . Sleepless nights of pacing . I don’t know how much more of this I can take . I have not been able to consult my gp since Covid ,but he prescribed Gabapentin 300 mg nightly several months ago Without speaking to me . I am afraid to take it after reading the side affects (and knowing someone who took it and has them ) . Are many people with RLS taking Gabapentin and are you having these awful side effects ? I am following strict dietary measures and doing numerous other things to help , but I’m having no success. This has complete control of me ...what I eat , when I can sit or relax , when I can lie down and hope for sleep and my day activities etc . I know many of you know what I am talking about . Any advice from the knowledgeable people who know what I’m going thru ? I know this forum is a great support system with very knowledgeable people . I’m thinking another opiod might be the answer but that might be out of the question when I get to speak to my gp.
Sorry for the lengthy message . Off to bed for another try , I’m worn out . Thanks for reading and any suggestions are appreciated.
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Muftah36
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Firstly, I just want to say that I'm so sorry you are having such a horrible time of it. It sounds terrible for you. There is hope though, so hang on in there.
It can take over your life as you can become too scared to eat or drink anything in case it's a trigger, or worried about which medication to take due to side effects. There will always be some side effects with any medication, so it's finding the balance where the benefits of a drug regime outweigh the side effects; that's unless you are lucky enough to manage without. But if you can't, and it doesn't sound like you can, then I think the next step is working out what is best for you. As I'm sure you know, everyone reacts differently so there will be an element of 'try it and see' to find a regime with the lowest needed dose of medication but a better quality of life living with RLS.
If you think the magnesium is a trigger, have you stopped it?
In terms of Gabapentin, many people do very well on it, others not, but it can be a very effective treatment for RLS so I think it is worth thinking about trying. However, 300mg is not likely to be enough. And the way you take it also affects how effective it is. Manerva and other community members have written a lot of posts on how to do this so please have a read through, but basically you need to take some of the full dose about 2 hours before bed (2/3s if I remember correctly?), and the rest at bedtime, as it takes a while to be absorbed. The other thing is that you need to give it 2 weeks or so to build up in your system before it becomes fully effective. And you can't take magnesium at the same time as hinders the drug.
I have no idea if you can take Tramadol alongside, or if you have stopped that. I do know you can take codeine alongside, which might be useful while you gradually increase the dose of Gabapentin to the optimum amount, then you can stop it once the RLS is controlled by the Gabapentin alone.
I don't know where you are based, but if it's in the UK, you can still speak to your GP as normal. It doesn't sound as though they are well informed which means you will need to read up on this and go to him/her with what you'd like. Search on posts on Gabapentin on here, and also Google The RLS Foundation and the NICE guidelines for RLS.
If the Gabapentin doesn't work for you due to side effects, you could try Pregabalin, and then move to other opiates, but you need a physician that is willing to support you. Could you ask for a referral to a neurologist? Or go private if your GP refuses? Or try another GP in your surgery? You are entitled to primary health care and this is a seriously debilitating disease.
And there are other things to look into, such as your ferritin levels and iron absorption, vitamin D and diet of course. Stress is a trigger so finding ways to keep calm are an important consideration, like meditation, mindfulness and diversion activities.
Muftah, Sampsie has given you good advice. Please don't be scared of trying leds because it didn't work out for others. As she said, we are all different and you don't know until you try.
Usually it takes about at least 900mg of gabapentin to be effective on its own. At doses higher than 600mg it becomes worth while splitting the doses into early and later evening doses, as Sampsie wrote. Also, the time to reach full effectiveness may be as long as 4 weeks, so don't give up too easily.
I hope you can reach your or another gp. Go prepared with knowledge and know what you want (increasing doses of up to at least 900mg to try for ay least 1 month?). It will take more time and experimenting, but you should be able to get much better than this. Good luck!
Great advice from Sampsie and Lotte.
When I first read the side effects of gabapentin, I was horrified, but they don't all affect everyone or to the same degree. I've been taking it over two years with only minor side effects. For me, the benefits far outweigh the side effects, so it's worth a try.
I think that many RLS sufferers will know only too well the distress and disorder to you life RLS is causing. I've been along a similar road to you. for the last 2+years been taking Pregabalin and I'm very much better. I am prescribed 300mg per day and I have never exceeded that amount, but there have been times when I have seriously thought of trying.
That said, due to recent weight loss of 18lbs due to a bowel problem, my weight has now stabilized at the reduced level, and am currently trying to reduce my dose to 200mg per day. It's early days, but I hopeful that I will succeed with a 50mg tablet in the afternoon and 150mg at bed time. Having said that, I am still having periods when RLS prevents me from sleeping. As soon as my head hits the pillow, the RLS will start in the Left leg. I tolerate for as long as I can but eventually I have to get out of bed and go have a cup of caffeine free tea . I dont comfort eat, but listen to opera or Jazz records and eventually I will try sleep again, and it may happen. Occasionally I have to repeat, but eventually I get off to sleep. If the RLS is v bad, I have to keep walking until I feel the RLS subside.
I have been suffering RLS for some 12 years. Prior to Pregabalin, I have had v bad RLS in both legs, PLMD in my arms and been 3 weeks at a time not sleeping and suffering the most terrible augmentation. Life was a real shit!!.
My life now is very much better, although sleep is still an issue for me, but I have the good fortune of being a patient at a London Hospital Sleep disorders clinic and hopeful that they will be able to continue helping me with that issue.
Regarding diagnoses , RLS medication, etc I do think that you should seek to get a GP referral to a Sleep Clinic or Neurologist who has RLS has knowledge,
I found the RLS Record sheet of great value in getting GP and Neurolgist to understand the severe impact the RLS symptoms, augmentation , lack of sleep, etc. was having daily on life.
Without utilising that record sheet, I think I would still be struggling today with the best efforts of GP who would only prescibe dopamine meds.
The Record sheep can be down loaded from the PRLS Uk web site. I wish you well for the future.
I was prescribed gabapentin 1 x 300mg at night by my gp (she was a locum) which did nothing for me. Having been on this forum and had a great response, I spoke to another gp who agreed this was not enough and suggested 2 x 300mg twice a day increasing to 3 x 300mg if needed. After a few weeks of trial and error, I now take 2 x 300mg at around 8.30pm and another 1 x 300mg when I go to bed which is usually around 10. 30pm - this has worked wonders for me, no rls on an evening and sleeping really well. Hope this helps.
I changed from codeine to Temgesic 200mcg at night. The codeine had become less effective and my symptoms were pretty much as you describe.You are already using opioids so no your GP may agree toe place them with 1-2 Temgesic.
I see no point introducing other treatments once you are on opioids.
Muftah36, I really feel for you and can relate all too well. I have tried almost every medication and “remedy” there is available for this disabling disease with no success. Finally, I recently began taking oxycodone and It has been life saving. I have not had any symptoms since I started taking this medication. My suggestion would be to try whatever is available but stay away from the DAs. I wish you the best.
I’m sorry to hear how badly you’ve been suffering lately.
I suggest you ask your GP for Temgesic.
There are now at least 5 people on this forum reporting incredible results.
Shumbah first notified us of this drug & its great results.
I suggest you write a detailed letter to your doctor setting out exactly how RLS is affecting you physically & mentally & copy the posts about Buprenorphine & Temgesic & ask to be prescribed it.
As you’ve already tried opioids (tramadol & codeine) your GP should not have any objections because Temgesic is safer & cheaper than Tramadol.
Thankyou so much for your response regarding my dilemma . I have not been able to see or visit my gp since Covid . I will be again requesting a visit in which I will discuss the prescribing of Temegesic . I may have to switch doctors which is in itself difficult as we have a shortage of gps and many can’t get one. Anyhow thTs another story . Meanwhile I’ll struggle on and try the Gabapentin hoping for some relief for my RLS without the side effects of it .
Hi I have been on Temegesic for a few months now I've had to up the dose to 400mcg in morn and same at night and it's been great no symptoms at all since the higher dose a week ago . Was only on 200 before . It can be hard to get but send doctor info on it as they do t know everything
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