Results of 6 month personal recording of RLS

[Wendy1]

Hi All

I told you that I was keeping a chart of RLS incidences and possible causes.

Since starting to take Magnesium Citrate (2x200mg daily) my RLS has definitely decreased to a more manageable level. I 'top up' with Iron Bisglycinate 20 mg daily when I am told I have a low level (which has occurred throughout my life since I was young)

I now take Ropinirole 1mg at night time (I wish I could decrease this)

For me (I know it is different for everyone) the MAIN aggravators are:

*Wine (I think it may be the sulphites)

*Sitting for 2 hours or more (which I sometimes need to do)

*Using my laptop on my lap

*Nights when I cannot sleep AT ALL (normally I have about 3-4 hours sleep if I'm lucky)

Secondary aggravators are:

*Eating sweet foods after 8 p.m. - it does have an effect

*Exercise can make my RLS WORSE and walking for some distance does not help either, though exercise is supposed to help RLS.

Other alcoholic drinks (though I hasten to say I do not drink a lot!) do not seem to affect my RLS.

It may not help many of you to have these details but if they help just one person to escape the misery the RLS causes, then I will be glad.

[Hidden]

This is great, Wendy! Thanks! I’m glad you found this out about yourself.

[Nannarls]

Thnx Wendy1. All those things affect me too and Ive been thinking about starting an RLS diary, including foods indicating times ingested and emotional triggers. For a fact emotional things cause me to sleep badly on top of the RLS so I would like to find out if the RLS triggers the bad sleep or the bad sleep triggers the RLS. I did such a diary 36 years ago because my baby who was generally a great sleeper would have bouts of night screaming. After about 3 weeks I realized it was every Friday and Saturday night when we ate garlic bread with our night meal. It was being passed on through the breast milk and that was the end of garlic bread and the night screaming. My point being, sometimes its best to note everything down and when a pattern emerges be willing to modify the behaviour. Like you, Wendy1, I too hope that if only 1 person gets relief from this torment, I will be glad of that.

[Graham3196 in reply to Nannarls]

I agree that a diary is very important to identifying triggers to your RLS.

There are a couple of points to note. Perhaps half of RLS victims don't seem to be helped by diet or food triggers. A very complete diary might help identify other triggers and could still be a help.

In my case there is a delay in the reaction to triggers. I understand this is common with food intolerances. There is a threshold of the trigger For example Lactose. If I avoid lactose for two weeks then I drop the level of lactose in my body way below the threshhold at which it causes RLS. If I drink a cup of milk then the body lactose level goes up a bit but (in my case) not enough to trigger RLS. Next day another cup but the lactose level is still not enough. After three days I drink a half cup and bingo there is RLS again because it crossed the threshhold. Now if I was not aware of the concept of a threshold then I might have decided after two days that lactose was not a problem and gone on to the next test - say apples. So I eat one apple and bingo I have bad RLS that night so I blame apples. Its necessary to ensure that the test is over a long enough period to be sure of the result before you start the next test.From the milk test above you might run some more tests and conclude that you can take a half cup of milk everyday without getting above the thresh-hold.

A slow process but otherwise the test results will be a mess of interactions which are more likely to confuse you than clarify the problem.

Cheers

Graham

[Hidden in reply to Graham3196]

Interesting post, Graham! I have discovered that I can only ingest so many sugary things over the course of a few days before I reach my threshold. I had a coke at about 6pm last night and made it through the night, but that now limits what I can take in over the few days.

[Nannarls in reply to Graham3196]

thank you, Graham3196, It is indeed very complex and I will try to contain my impatience with the slowness of my diary. Last night I did everything right that I know of (for me) yet I still had the rls symptoms til 1.00am.

[LoisTonya in reply to Nannarls]

Hi Nannaris, I too am keeping a diary of medication, supplements and distance walked as well as anything I think might have effect. Yesterday, a neighbour upset me with unjustified accusations and my rls was particularly bad during afternoon and evening but it settled down and I slept well. I had never associated rls with emotion before.

[Nannarls in reply to LoisTonya]

Im glad you settled and slept well after that incident. Learning to let go quickly helps a lot of issues. I wish u well in ur quest.

[LoisTonya]

Hi Wendy,

You sound similar to me. Large quantities of magnesium and gentle iron have made a huge difference and I take 1 mg Ropinerole at about 8.30.( this is reduced from 1.25) Initially the Ropinerole seems to trigger rls but when it dies down I go to bed and am sleeping very well. As for walking - All professioals advise lots of walking but I find long walks trigger rls. Best for me is alternating short walks with sitting and pottering around.

[Nannarls in reply to LoisTonya]

LoisTonya: I agree with the short walks too. In the past over-exercising has brought on ALL night serious RLS. I dont take meds for the RLS but I take Tramol and Lyrica for more recent injuries to my knee, back and hips...the RLS didnt get worse with the meds...for that I am very thankful. I hope you soon find all your triggers and get permanent relief.

[CindyPatt]

Yes Wendy most of those things trigger my RLS too! Long car or plane trips are torture!!! Ropinorile used to work for me until I augmented on it and had to wean off.

[Hidden]

Hi there, A glass of wine actually helps me to go to sleep which again shows we are all different. HOWEVER, definitely finding an improvement now that I have been on MAGNESIUM for 3 months.

[Eryl]

Congratulations on yous success. A demonstration of the effort that goes into finding triggers.

You say that eating sweets after 8pm gives you RLS, but have you considered that cutting them out altogether and weaning yourself off sweetened foods, and avoiding other triggers, might mean that you don't need to take any meds?

[MumofSam]

For me, stress is definitely the major trigger factor in RLS. I’m not saying I had a bad childhood, cos I didn’t, but I remember going to stay with a French family for 21 days and my RLS symptoms disappeared completely, whereas prior to that they were daily in those days. I believe that was down to a change in stress levels as I did feel quite stressed at home.

Also exercise makes RLS worse for me too, particularly when it’s made my legs hurt or feel like jelly.

Not sure about diet as I’ve never noticed any triggers.

[John_naylor]

We discussed exercise at a workshop at the RLS UK AGM and were advised that 5-7pm is the time to exercise as our body clock is part of our RLS problem and this was the optimum time to help. It was also suggested that anaerobic is best for us, it is important to maintain muscle mass as we age as it is a Dopamine generator if I understood correctly. Aerobic exercise is less helpful to us. I found it very interesting but can’t say I have had much improvement as I haven’t stuck to a regime and other factors have taken over (sweet foods, eating late, glass of wine....)!

[Nannarls in reply to John_naylor]

This is all very interesting info for me. My body clock has been nuts since childhood due to frequent and unexpected beatings by my father and the terror of night sleeping.....But thats over now and I get on my exercise bike randomly throughout the day as my hip injury makes the seat too painful to stay on for long BUT now I will aim my limited income to getting a better seat so I can follow this idea. Thanks for sharing.

[Memmy]

I agree with you completely. Im now on pregabalin 300mg which has just started to work. I take magnesium and occasionally iron but my ferritin level is 110 which is good. Wine is a nono unfortunately because I love a glass or two. Its now 5 in the morning and my left leg started but I took 5 drops of CBD oil under the tongue and it has settled down. So lets hope the pregabalin keeps doing its thing. Before today I had to take a 50mg tramadol which I wanted to stop.

[janland]

Hi Wendy..I was interested to read your article about keeping a chart of rls triggers..Since writing... have you got any better..?

I'm trying not to take any medication that isn't natural... because of augmentation...I would prefer to get to root cause..

Perhaps endocrinologist or neurologist could help me..?

Best wishes

[Wendy1 in reply to janland]

Hi. I regularly take Holland and Barrett Gentle Iron and Magnesium supplements which have both helped lessen, but not stop, my RLS. I did go to a neurologist (UK) but I was only ever given medication so researched it myself. I think that once you suffer from it, it's almost impossible to get rid of. Mine is also linked to extreme sleeplessness which is a frequent symptom. I do find that wine sets my RLS going and I believe (through trying various foods etc) that the sulphites in wine set it off, so I no longer drink wine. Strangely spirits do not aggravate it. Every person reacts differently - there is no 'rhyme nor reason' to it - but I am grateful that my symptoms are less due to the results of my 'research' chart. I sincerely wish you luck in lessening your RLS.

[janland]

Hi Wendy... thank you for your comments and reply....Like yourself I've been researching for years and during lockdown have been going through all my old notes...to see if I'd missed anything..

I did find something...it's all about inflammation if the body.. including the brain caused by our modern and sometimes junk food diet.. especially as we get older..

I'll send you the link..

It basically says that if we keep inflammation down...we can be rid of rls.

I also believe it's something to do with our gut health.... and brain neurotransmitters which is connected to the gut... apparently.

Anyway...it's more or less a list of good supplements and herbs that brings down inflammation of the body.

I also believe too that eating too late before bed and the wrong foods such as sugar or saturated fatty foods could cause rls ...

I'm getting it worse and worse lately despite eating good food and exercising..

So here's the link...

Perhaps you would like to share it with others on this site you may connect with..

We can all have hope...!!

rlcure.com/daily intake for an absolute cure for restless legs syndrome.

Best wishes

[Wendy1 in reply to janland]

Thank you. I will take a look, though I eat very healthily and not late e.t.c. Sometimes there appears to be no reason sadly. Good luck!