An Ickle Surprise...

[Peterdh2u]

Hi everyone,

Like many of you, I have suffered this RLS curse for getting on for 30 years of which the last 20 years have been tough. Watery smiles and sympathetic shrugs from doctors didn't lead me anywhere and I was stuck with my best "fix" of paddling in cold water two or three times a night to buy me enough numbness in my feet to get to sleep.

However, having read posts on this site recommending magnesium citrate, I decided to give it a go and it helped me a lot. I can still remember waking up after my first full night's sleep in ages in disbelief, so I now take 200mg every evening.

My wife and I also take a few other vitamin supplements such as Omega 3, multivitamins and Glucosamine and, last week, we ran out of Glucosamine.... The following night the RLS came back to haunt me. For the the next three nights, it was the same old story of thrashing around in bed, before going walkabout and paddling in cold water. It was too much a coincidence to ignore, so off we went to buy a new pack of food supplement tablets containing Glucosamine Sulphate (500 mg), Chondroitin Sulphate (400 mg) and Vitamin C. The RLS was gone again the following night.

I know this is a simple fix that may not suit everyone, but I would be delighted if it helped anyone enough to give them a taste of the respite I have enjoyed recently.

Good luck and fingers crossed!

Peter

[Joolsg]

Delighted to hear you’re managing to control your RLS in such a simple, healthy way.

Thanks for sharing.

[Madlegs1]

That's great- very encouraging. Thanks for sharing.

[involuntarydancer]

Interesting. Thanks for posting.

[Inallfairness]

Straight to the chemists for me ...thanks for sharing&good luck Peter.

[Peterdh2u in reply to Inallfairness]

Go for it... I hope it works for you too!!

[Amelanchier]

Hi Peter, how interesting because over the years I have also noticed a correlation between my glucosamine/ chindriitin supplement and relief of restless legs. After doing a bit of research I decided ( maybe incorrectly) that it was the chondroitin part that helped. I was so convinced that I wrote to the RLS foundation to let them kniw about it. However like many ‘cures’ for RLS it doesnt seem entirely consistent and I have reduced the amount of the glucosamine in recent years so I still get restless legs althoughI suffer a lot less than some I am thankful to say and have never taken prescription medicines for it.

Best wishes

[Peterdh2u in reply to Amelanchier]

Hi Amelanchier,

I tried to get medication prescribed by my doctor many years ago without success because the condition was simply not understood. It is great to see that so much progress has been made in recent years and I really appreciate the wonderful commitment of people on here who are dedicated to advancing knowledge, sharing experiences and providing support. However, there are so many variables and problems reported, that I have made a conscious effort to try and find relief by exploring alternative and/or holistic solutions.

One other thing, I was diagnosed with osteoarthritis earlier this year and now need a new knee. The joint pain combined with the restless legs was intolerable. I was taking Ibruprofen and painkillers to help with pain and even resorting to drinking myself to sleep on occasion. Around the time I started taking magnesium, we went over to see family in NY (yes, the delights of long haul flights...arrrgh!!). Whilst, there I was recommended to try Aleve, a non-prescrition NSAID. It really helped me; I slept most nights of the holiday, so bought a bucket load from Costco to bring home with me.

I can't begin to explain the nuances of why my lttle cocktail works for me, but I'm delighted that it does and hope that sharing might help others.

Good luck and best wishes.

[KellyDBrille in reply to Peterdh2u]

Well, it's probably too late, but just to warn others -- the use of high amounts of NSAIDS actually stops proper bone remodeling -- hence the astronomical numbers of people getting hip and knee replacements. Sorry I didn't see this 2 years ago...

[Peterdh2u in reply to KellyDBrille]

Thanks for sharing that, Kelly. I was only taking a single 220mg tablet each evening but stopped taking that over a year ago when I had a hip replacement.

Incidentally, the hip replacement op led to a very severe 6 week RLS flare up which I believe was triggered by the epidural. Having refused Pramipexole and not benefited from Tramadol, I ended up being prescribed Gabapentin which has worked really well for me ever since, so I now take two 300mg Gabapentin each evening along with single 300mg AvoVida and 500mg Glucosamine tablets.

My Physio, who is also an RLS sufferer, recommended 1200mg Glucosamine, but two years on, I find that 500mg is still enough and I'm generally getting a good 8 hours sleep. If it ain't broke, don't fix it!!

[KellyDBrille in reply to Peterdh2u]

Thanks for your kind reply Peter. I have a hypothesis as to why the glucosamine helps, and that is because it helps gut barrier function -- helps to address intestinal permeability. And since RLS has been linked to SIBO (Small intestinal bacterial overgrowth) and also elevated ammonia levels (often connected w/gut and thus liver problems) then perhaps that's why you found a benefit w/glucosamine.

Thanks for the suggestion -- I'm going to try it ASAP.

[Peterdh2u in reply to KellyDBrille]

That's a very informed response, Kelly. Do I detect a medical background or are you just extremely well read?

I am at a loss to explain the benefit, but the Glucosamine certainly works for me. I hope it will for you too. I have never suffered with any digestive/ gut/ liver problems other than very occasional indigestion after over indulging in rich food!!

Please let me know how it goes for you.... Good luck!!

[KellyDBrille in reply to Peterdh2u]

I'm just trying to figure it out as I've had it off and on for years -- but quite a bit more often the past two years, so I've been reading everything I can on the subject. I hope others will as well. I order the glucosamine/chondroitin, but realized it also had MSM, which I don't tolerate, so I'm returning it and haven't tried out plain glucosamine yet. Thanks for the reminder!

[Peterdh2u in reply to KellyDBrille]

Hi Kelly, did you manage to get any benefit from the Glucosamine?

I ran out yesterday and, once again, the RLS returned the same night. That was despite the precaution of taking an extra Gabapentin tablet and a 400mg magnesium citrate tablet.

I am now absolutely certain that there is a definite benefit to me of taking Glucosamine and Chondroitin so I'll be stocking up again tomorrow!!

[Hidden]

Absolutely awesome sir, when you first get some sleep, and I am SO happy for you! congratulations and thanks for letting us know

[involuntarydancer]

Hi Peter, what time of day do you take the glucosamine? Thanks

[Peterdh2u]

Hi, I take 200mg magnesium citrate, 1 multivitamin tablet, 1 max strength cod liver oil, 1 Aleve tablet and 1 Glucosamine and Chrondroitin tablet with my evening meal at around 8pm.

It seems to do the trick for this 13st active but creaky 58 year old!

[involuntarydancer in reply to Peterdh2u]

I got my (costly) glucosamine/chondroitin tablets today and took them at 8.00pm. The legs have been acting up the last few days so this should be a good test of the glucosamine. Fingers crossed. Even if they don't work for the legs they will hopefully help with my own creakiness. I have resumed high intensity training in the last few weeks and at 52 I need all the help I can get! I have also purchased some nicotine gum as per JimmCar's suggestion in case I get breakthrough symptoms in the night. This is my first time trying something new for the legs in a while. It would be so exciting if it worked.

[LanaCSR in reply to involuntarydancer]

I was reading this post from a month ago and wondered if the glucosamine is working for you?

[involuntarydancer in reply to LanaCSR]

My rls is very under control at the moment which could be due to the glucosamine. It's hard to tell as I increased my dose of ldn at about the same time. Furthermore, over the years I have had the occasional period of lessened symptoms so it could be spontaneous. My diet also changed at the same time - I am eating much less and probably less sugar and junk. However, my experience would definitely suggest it is worth considering the glucosamin. I'd be very interested to hear of anyone else having a similar experience.

[LanaCSR in reply to involuntarydancer]

Thank you for your reply! How much glucosamine do you take?

[Peterdh2u in reply to LanaCSR]

Hi Lana, please see my original post for how much I am taking of what.

The other tablets may be playing a part too.

Good luck with it.

Peter

[involuntarydancer in reply to involuntarydancer]

I take 2 Solgar extra strength Glucosamine Chondroitin MSM. Each tablet contains 1245mg glucosamine. They are huge and very hard to swallow. I should say I am also using patch med iron patches at the moment also - in addition to my usual iron bisglycinate supplement so perhaps my iron levels have risen which may be contributing to my good patch.

[Peterdh2u in reply to involuntarydancer]

Hi ID, Glad you are still enjoying your good patch. I am still getting good results using Boots' own brand tablets which contain Glucosamine Sulphate (500 mg), Chondroitin Sulphate (400 mg) and Vitamin C. I only take one tablet a day, so you must be taking five times more glucosamine than I am... I'm not surprised you found the tablets expensive! I would have thought you would be able to get the same benefit from a single tablet and could get away with using a lower concentration next time.

It would be good to know whether the benefit derives from the glucosamine or the chrondroitin content as mentioned by Amelanchier in an earlier post?

I hope you don't mind me asking, but did you get your iron supplements prescribed by your GP following a ferritin test or did you just take a punt and buy them?

[involuntarydancer in reply to Peterdh2u]

Hi Peter,

I have ferritin tests fairly regularly as my levels fall spontaneously and reasonably rapidly if I don't continually supplement iron. I bought the patches myself however - not on prescription - from a US site - patchmed I think it's called. Thanks for info about glucosamine - I just went from the recommendation on the bottle! I will try and reduce and see if there is any change. Will keep you posted.

[Peterdh2u]

Hi again, I'm keeping everthing crossed for you and really hope it works! I have no idea if the other tablets played a part, but the simple fact is that when I stopped taking the glucosamine tablets, my RLS returned until I started taking them again.

Btw I'm very impressed by the high intensity training. If this doesn't work for you, you could always give the cold water paddling a go!!

Please let me know how you get along. It may take a night or two, but I'd be delighted for you if it worked tonight!

Peter

[Peterdh2u]

Ok, so it's 2.15am, the RLS is back and I've got my feet in cold water. I was about to eat humble pie and send out abject apologies, but then realised that because I have been out and about all afternoon and had dinner at my daughter's this evening, I forgot to take my tablets.... doh!!!

[involuntarydancer]

I have been taking my glucosamine religiously since this tevommemdation and my rls has been surprisingly, almost miraculously under control. I can’t say hand on heart it is the glucosamine as I make on it two tweaks to my other drugs not long before but I really have had barely a whisper of rls. Long may it continue. I will post once I stress test it properiy.

[Peterdh2u in reply to involuntarydancer]

Wow, that's brilliant news!! Thanks for letting me know. I had thought the worst having not heard back from you.

Of course, I understand that there are other factors to take into consideration, as indeed there are for myself, but I only posted because it was too much of a coincidence to ignore.

I'm keeping my fingers crossed for you and hope to hear more good news once you're sure, but for now I'm taking it as a lovely, early Christmas present!

[Peterdh2u in reply to involuntarydancer]

Hi ID, I hope you don't mind me asking if your RLS is still under control and whether you reduced your dosage?