I'm afraid I haven't posted for a long time! I am 74 and my symptoms have become more severe, causing real loss of sleep.
A neurologist I saw recently wanted to put me on dopamine-agonist patches which I refused, tho' I am following her recommended course of B12 injections. I've had 9 of the 12 jabs prescribed and I find my symptoms have been reduced to some extent and my sleep quality has been improved. It does seem, however, that I have developed an irritating skin rash which could be caused by the cobalt in the vitamin dose. ( I am allergic to nickel so this could be a similar reaction.)
I regularly swim, and do Pilates which I find help as does binding my large leg muscles tightly before going to bed - it seems the pressure thus applied helps reduce the painful ache inside the muscle.
I am very reluctant to take any medication but it has been suggested that, since ferretin tests have shown appropriate levels for an RLS sufferer, I might benefit from magnesium supplements.
Has anyone had experience of using B12/magnesium compound, either together or separately?
I would be extremely grateful for any information from this invaluable hive mind !
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argyll1
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When your doctor said that your ferritin levels showed "appropriate levels for an RLS sufferer" did they give you the actual numbers - particularly for ferritin and transferrin saturation (TSAT)? I know you're in Greece, so things may be better there, but few UK doctors know anything about RLS or appropriate iron levels
Thank you so much for your response. I take your point re docs - the neurologist here - who had worked and studied in London - claimed that there was no augmentation in RLS sufferers, only in Parkinson's patients.
The ferritin reading was 155- I understand it needs to be over 100.
If your blood test was taken after fasting for 8-12 hours and after refraining from iron supplements (if taken) for 48 hours, 155 isn't bad. 200 would be even better. Neither is a guarantee against RLS but getting over 100 is said to help the majority (at least those who don't suffer from other aggravating factors, such as augmentation after taking dopamine agonists etc)
After Chris, my other favorite magnesium success story is below. GreekStudent takes it during the day. I believe that is a better time to take it than at night, for a rather complicated reason:
Greekstudent profile imageGreekstudentdavchar23
1 month ago
I buy magnesium capsules from Bettervits and take two in the morning (I guess that time is arbitrary and others might choose different timings). I think the max daily dose is around 300mg, and I think it is dangerous to take too much daily. As I said, I started on M having read of its efficacy in reducing leg cramps and periodic leg movement disorder(which it has); it had not occurred to me that it might deal with RLS also. In fact from my reading it seems that M plays a major role in many pathways and systems in the human body. The capsules I take include several forms of M and also Zinc which apparently helps the body to take up the Magnesium. I hope this is helpful.
davchar23 profile imagedavchar23Greekstudent
1 month ago
Thanks for your reply. if you changed to Gaapentin how can you be sure that alone did not improve your RLS not the Mg?Kind regards
Greekstudent profile imageGreekstudentdavchar23
1 month ago
I deduce that magnesium is the cause of my RLS ceasing from the fact that I no longer have to take gabapentin at all.
After I found that my iron levels really were OK, I found magnesium (citrate - but that can have a laxative effect, glycinate if available to you) to be a life saver combined with cutting down on sugar and caffeine and cutting out aspartame and other artificial sweeteners altogether. But I've never taken B12 so can't advise on that
I found magnesium to be a great help, but it by no means helps everyone - it did nothing for my brother.
I tried magnesium oxide first: nothing (it's not bio-available enough). I tried rubbing magnesium oil into my legs - nothing. Then magnesium citrate was recommended and it helped immediately. The recommended dose here in the UK is 400mg a day, but initially I took 600mg a day without problems. I always used to spread it out through the day, because I found if I took it all in one go it indeed had the warned laxative effect. I'm now down to 200mg a day taken in the morning. But some people can't even take 100mg a day without having problems. ☹
Magnesium glycinate is widely recommended instead because it both aids sleep and is less likely to cause problems. I've not tried it so I don't know how much is likely to work.
I did find that some things could 'overwhelm' the magnesium and I could still suffer RLS: statins were my particular bete noire, as were the artificial sweeteners in diet drinks and too much sugar & caffeine. Cutting out these things and just taking magnesium daily means that I very rarely now suffer RLS - just a handful of times this year when I've over indulged in something.
Your triggers may be different from mine, and magnesium may be less effective for you. But it's worth a try - good luck!
As ChrisColumbus says, we need to know your actual serum ferritin figures. For RLS they should ideally be above 200, but doctors will say they're normal at 15/20.Well done for refusing dopamine agonist patches, as ALL dopamine agonists will eventually cause severe RLS and the withdrawal is brutal.
If raising serum ferritin above 200 doesn't help, and you're not on trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds) then first line meds are now pregabalin or gabapentin.
Yes magnesium glycinate taken at night can help. Start with a low dose to see if you have any side effects.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
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( I am allergic to nickel so this could be a similar reaction.)
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