I am really suffering at the moment, getting no more than 1 hrs sleep, dreading bedtime and getting really bad rls during the day.
Since finding this community about 3 weeks ago I have stopped amytryptilene for pain, am taking Gentle Iron 20mg with orange juice at night and using Better You Magnesium Oil massaged into legs before bed.
I know it is early days but there is no improvement, my rls is worse if anything and I am desperate for sleep.
I have read several posts on here, one in the last day or so but can’t find it now, of a member taking 400mg magnesium capsules and I think they said symptoms had disappeared almost completely.
I know what works for one may not work for another with rls but are there any other members finding oral magnesium, as opposed to the rub, gives relief from this terrible suffering?
At the moment I am willing to try anything.
I am waiting on a drs appt and considering getting a private full health check done if it includes ferreting levels in their iron results at the moment.
Thanks for reading, much appreciated and look forward to any advice.
Andy.
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a2jonuk
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You have nothing to lose (except for a few £ of course!) in taking magnesium in supplement form as that's the only way you will know if it helps you. I have PLMS rather than RLS and I take 400mg magnesium citrate at bedtime. I still feel exhausted in the morning so it is not fixing the PLMS but my legs ache less when I take the magnesium. I also think it helps me to fall asleep (which is supposed to be one of its benefits). I had tried the magnesium oil before and didn't notice it was helping in any way. The supplement upsets my stomach but I can live with that.
I haven't checked your previous posts and cannot remember whether you had tried gabapentin, but if not maybe that is an alternative to the amitriplyine for pain and which is also a treatment for RLS.
I think my next step could be to try the magnesium supplement. I will persevere a bit longer with the oil to give it a fair chance.
I am not taking Gabapentin, yet, I am trying to stay off the specific RLS drugs if possible after hearing of the bad augmentation people are having to deal with.
I have been taking CoCodamol 30/500 for some time for back pain so willtry to cope with just that now O have eliminated amytryptilene.
I take oral magnesium and I haven't noticed it helping, but I take it anyway in the hopes there is some sort of baseline need, and lower than that can make RLS worse.
Are you not on any drugs specifically for RLS/WED?
If not, it may be that you have reached the stage where drugs are inevitable - dopamine agonists, alpha 2 delta ligands, and/or an opioid. If you have familial RLS, then the condition slowly progresses over a lifetime - and there is a stage at which you need more than supplements or other nostrums.
Magnesium is helpful, most of us are short of it, but it is not a cure.
If your wait to see the doctor is long, then go the private way. But first do your homework on RLS specialists that you can possibly get to see. Many doctors are ignorant of this condition, and a waste of time. so aim for the best so that you do not suffer further. Find a possible doctor, then phone and ask about their expertise.
Do not assume that all neurologists are up-to-date, many are not.
And yes, you do need to know your ferritin levels - ask for the result, do not accept 'everything is fine'. If it is under 75, it is not fine.
Thank you again Parminter, your input always much appreciated.
I am not on specific RLS drugs yet, still waiting to see dr but after reading of the augmentation problems I am trying to avoid them but if necessary for relief I will get them.
I am taking Cocodamol on a regular regime and it seems to give a little relief to daytime symptoms but little help at night .
I am doing the research but as yet not found an RLS specialist in UK but will keep plodding at that.
Hi Andy. I to have tried magnesium supplements and didn't notice any difference also. However, with more research I have found Valerian and Passion flower. Tonight is night number 4 . I take 500mg magnesium, 3 Valerian capsules, and 25 drops of passion flower( comes in a tinture) and for the first time, three nights in a row, no symptoms. I have never taken any meds, and I was around 8 yrs old when it started. I am almost 50 now.
I seem to remember I was around 7 to 8yrs old too when I had the funny leg feelings first and my mum has said I could never keep my legs still as a youngster, she thought it must have been "growing pains" .
I am 60 this year and this is the worst I have ever been with it.
As Parminter wrote, you don’t mention taking any RLS meds......I am on Gabapentin 600mgm, 2 hrs. before bedtime and also take Magnesium Citrate 200mgm at the same time. I have been on this regimen for almost one and a half years, and it works so well for me that I haven’t shared with the group for fear that I would jinx myself! The Gabapentin does make me a little unsteady when I get up in the morning, but that goes away.....and a good night’s sleep is worth it!
Best of luck with your doctor, and keep us posted!
Hi, Andy, sorry to hear of your travails. We can all relate. As Parminter said, you may be at a point where you need some medication(s) that are specifically for RLS. Dopamine agonists (DAs) like pramipexole or the Neupro patch are very effective, but often lead to augmentation, where your symptoms get worse. So if you go that route, stick to the lowest effective dose and resist increasing it. In that class, the Neupro patch has a lower risk of augmentation.
The alpha-2-delta class (gabapentin, pregabalin, etc.) is also effective, and these have a much lower risk of augmentation.
The most effective class is opioids, which must be approached with caution, of course.
But before anything, make sure to get your blood iron levels checked. Specifically, ferritin. For those with RLS, it needs to be at least 100, according to the RLS experts. I see you're taking Gentle Iron, but if your ferritin is very low, you may need an iron infusion. These help many of us (about 50%, I believe). The supplements will help, but may take much longer to get you over 100. Good luck!
Thank you rls-optimist, much appreciate your time and input.
I am currently searching for a dr who recognises RLS and has experience treating it.
I have been taking cocodamol for quite some time for a back condition and mow take it on a regular regimen as opposed to as needed to see if it will ease the rls issues.
I am booking a private health check including blood iron levels but just waiting for confirmation that ferretin level is checked and reported as a number as opposed to "normal".
Have you tried gabapentin? It help me when I had RLS due to my severely low iron levels. Also taking a multi vit with iron or even a iron supplement daily can help. Talk to your doctor about it first and have them check all your levels. Ask for a CBC
Hi,just read your post. Recently started taking 250mg of magnesium but take at around 6pm with glass of orange juice. I've replied to another post suggesting they use a posture support cushion/pillow whilst sitting during day but especially in evening. They help relieve pressure on spinal cord and nerves and help to correct posture.
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