Help with RLS

[harbinson4567]

Hello everyone,

My name is David I'm 37 years old and I have suffered with RLS for over 20 years and I know only to well that RLS can have a significant and detrimental impact on your life.

To give you some idea of my condition I can only describe it as being severe to the point if I could chop my legs of I would (not really). I have tingling in my legs and feet on a daily basis with it being more severe at night. I would regularly be up pacing the floors most of the night and because of that would be exhausted during the day. If was to get a good nights sleep once a week I would be doing well.

I have been on most medications over the years and have found relief with most of them, but over time have become tolerant to them and have had to either increase the dosage or change to something else. I have taken various pain killers both over the counter and prescription some of which have helped others have had no effect.

I have read all the various forms on the internet and have tried things like changing my diet, lifestyle, dipping my feet in cold, etc. all to no avail.

I one day recently decided to pay and go see a Neurologist Consultant as I was at the end of my tether and was starting to get more concerned that I maybe had more than just RLS. During the consultation the Consultant told me that a study had been carried out for people with Neurological Conditions and it was discovered that their levels of B12 where too low even though a blood test may show that they're at normal levels. Based on that he advised me to take a high dosage vitamin B12 supplement. Now you can get vitamin B12 from things like liver and other animal origins, but for me tablets are easier. I've been taken a high dosage of vitamin B12 now for around 3 months and have been sleeping like a baby. It does take around two weeks to get into your system so you have to be patient. The question for each individual is dosage. I am 6ft 3 and around 16 stone and I need to take around 40,000 mcg a day along with my prescription (Mirapexin 1.05mg prolonged released). I have now reduced my dosage down to 20,000 mcg a day with no negative impact. I do feel it will be a case of trail and error and each individual will be different.

As I take quite a high dosage I purchase Vitamin B12 5000mcg tablets online although I did get some prolonged release 1000ug on prescription. You can also get vitamin B12 at places like Holland and Barrett although they only sell 1000ug tablets.

All that being said it may be worth giving this a try as I am sure like me you are willing to try anything. For some it may work, but for others it may not, I just hope that it will make a difference for everyone.

Regards,

David

[Hidden]

Thanks and welcome David. Interesting that. I'll have to look into that.

[harbinson4567]

Thanks. Certainly do it may help.

[jimeka]

Hi David. Did your doctor not offer you injections. Our doctor gives then every 3 months so you get them free but I don't know the dosage. Thanks for info. Cheers Jimeka

[harbinson4567 in reply to jimeka]

Hi Jimeka. No, my first option was the supplements and to be honest I'm just happy that it works. I may consider the injections in the future.

[beady3]

What a nice letter David glad you are getting on ok with vit B 12 are you on Tramodol as well or are you just taking the vit tabs ,don't we all wish for a cure x

[harbinson4567 in reply to beady3]

I have taken tramodol as well, but I don't at the minute. I found tramodol to be affective but the side affects were I wouldn't really be sleeping it just numbed the discomfort. I take mirapexin with B12. If you haven't taken B12 do try it. You will just have to try and work out the dosage.

[beady3 in reply to harbinson4567]

Harbinson thanks for telling me what you are doing,well today I bought mag spray and B 12 vit I am going to start the vit tabs which it says take 1 a day with meal and I do have mag bath so tonight I am trying 1 Tramodol and put spray on later if need be Well this tieredness is driving me mad BUT if it doesn't work it will be 2 tram tomorrow ,sometimes I feel such a mess as I keep reading up things about rls ,always just hoping to learn about the pesky thing that attacks me at night x

[beady3 in reply to harbinson4567]

Well Harbinson I had a rubbishy night,so am back to taking 2 Tramodol tonight,can you tell me how many B.12 tabs you take because it says take 1 a day I am 5 ft 6 tall and 10 stone and when did you decide to cut tabs down and just take less mirapexin with B 12 thanks for help

[harbinson4567 in reply to beady3]

It does take time and in terms of dosage you can see from my previous posts I am taking more than one tablet. What dosage of tablet did u get?

[beady3 in reply to harbinson4567]

The tabs areB12 1000 think it's yg after it says 1 a day Do you get good nights now , thanks

[harbinson4567 in reply to beady3]

I would take 4 5000ug tablets twice a day. I still take mirapexin and yes I do get a good nights sleep. It took at least 10 days before it made a difference. I would say that 1 a day will not help at all. If you are concerned about the dosage speak to your doctor.

[Shon48]

Think I'll give that a try too . I use the Goodnight Magnesium spray on my legs before getting into bed and I've found it helps. Ive also used surgical stockings which also help but make me very hot. Like you I'll try anything . Cheers David

Shona

[beady3 in reply to Shon48]

Shona I was going to get mag spray today but what do you think are you going to try the vit b12 I am on TRamodol but they make me so tiered ,will you let me know, I think we are all clutching to any straw for help without the side affects thanks x

[Shon48]

Hi there, I use the magnesium spray most nights . Sometimes it doesn't help but if I have a really bad night I'll use it along with the surgical stockings. Yes, I'm going to try the B12 and ordered it from Amazon this morning . Like everybody else we just try what we can to hopefully stop the legs moving . It's such a strange problem. Mine only started when I was going through Chemotherapy and just hasn't left .

I'm sure it will take time to get through the system but really worth a try . G.P. Isn't much good and most medication I've tried doesnt work for me . Doctor keeps just saying to exercise more but forgets I have neuropathy in my feet again due to the chem. so I'm just trying every alternative I can find . I'll let you know in a few weeks if it has helped . As for you I would certainly get the magnesium spray ( purple bottle) and give it a try , it has worked for a few people I've recommended it to .

Good luck

Shona

[Windwalker]

David,

glad you found relief. I took all the remedies anyone suggested. Nothing ever lessened my RLS but dopamine agonist and opiates. I am currently taking time rel requip and asmall amount of codine (5mg daily at bed time.

I would smear animal feces onto myself if it would help me,,,,,, well maybe not but I'd do most anything. My RLS is the kind they call primary, meaning it is genetic and genes don't care they just do what they do and you can't stop it with half measures.

[SuperMNew]

David, you're sleeping like a baby, but what about your RLS? I identify with your story totally! It sounds like mine. Since my RLS starts when the sun goes down (8-9 p.m.) and does not stop until the sun comes up, my doctor told me it is the cycling of dopamine in the brain that is causing my problem. So, I am now using Mucuna Pruriens (Zandopa) and it is working pretty well for me. I DO NOT like prescription meds because it solves nothing--just binds you to higher and higher dosages until finally nothing works to stop the RLS any more. Do some research on Mucuna. You'll find some good studies that are done with Parkinson's disease, which is caused by the same lack of dopamine production in the brain. I don't have Parkinson's, but I've suffered with RLS for 40 years.

God bless!

SuperMNew

[Hidden]

Just for the record, we RLSers dont lack dopamine, its that ours doesnt work the way it should do.

[Pete-1]

Sorry if I have the name of vitamin mixed up, but I am fairly certain that B12 is the one relevant to this thread.

I was told by someone that the B12 supplements should not work because the problem of B12 shortage is caused by a shortage of whatever it is that body uses to allow absorption of B12 in the gut. But if the B12 is injected directly into the the blood stream then the problem is circumvented.

I guess that if supplements are found to be effective, at least to some degree then that may be due to just a partial failure of the natural B12 absorption mechanism..