Restless Leg Syndrome RLS  long-term use ... - Cure Parkinson's

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Restless Leg Syndrome RLS  long-term use dopamine agonists results in much worse RLS than before treatment,referred to as RLS augmentation.

Little_apple profile image
16 Replies

I believe RASAGALINE Azilect has given me restless leg syndrome.

Has anyone else had this experience?

What I have read from various sources is that dopamine agonists are a short term fix for RLS but can make it much worse long term.

RLS is associated with low iron and iron supplementation is therefore recommended for RLS but excess iron is neurotoxic and associated with PD.

Advice and sharing of experience is appreciated.

ncbi.nlm.nih.gov/pmc/articl...

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Little_apple
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16 Replies
chartist profile image
chartist

It seems like it wouldn't work, but many people report that a bar of soap in bed can relieve RLS. I don't have RLS so I can't test the idea, but it seems like a potential remedy that is very inexpensive to try :

verywellhealth.com/how-to-u...

peoplespharmacy.com/article...

livescience.com/22461-will-...

Another remedy that works for some people is Magnesium Chloride Oil or mag oil , which is also very useful for rapidly alleviating muscle cramps and mild to moderate joint pain.

You can read customer reviews of mag oil for RLS here if you follow the link and then click on the "restless legs" tab and the "leg syndrome" tab :

amazon.com/Magnesium-Oil-Sp...

Not scientific at all, but if you are one of the lucky ones that it works for, you'll be glad you tried it!

Art

marcet profile image
marcet in reply to chartist

i tried the bar of soap but doesn’t work at all for me

Snoopy07 profile image
Snoopy07 in reply to marcet

I am told it must be pure lavender soap.I am trying bicarbonate of sofa at present with good results ,so .All of a week.?

M-o-ggy profile image
M-o-ggy in reply to chartist

Hi there. How does one use the bar of soap ?

chartist profile image
chartist in reply to M-o-ggy

This is a direct quote from the first link I posted in my original reply :

' How Soap Is Used

Some say you should place the bar of soap at the foot of the bed. Others say it must be close to the location of the cramps. Under the sheet and inside a sock are two other suggestions. It isn't clear how soap in such different locations could have the same effect on the legs. '

Art

House2 profile image
House2

Try jujube extract

Little_apple profile image
Little_apple in reply to House2

Thank you.

It is said to be calming. But It is said to decrease gastric acid which I think might disrupt or slow digestion but offer temporary relief.

My sleep has improved since taking Ku Shen.

rhyspeace12 profile image
rhyspeace12

Are you sure it is restless leg syndrome and not REM sleep disorder?

Moonwalker1967 profile image
Moonwalker1967

A bar of soap didn't do nothing for me.

Deforel_Ch profile image
Deforel_Ch

Same for me with selegiline. When taking 5 days a week RLS disappears.

Little_apple profile image
Little_apple

ncbi.nlm.nih.gov/pmc/articl...

Higher incidence of RLS in those treated for PD. Not receiving PD meds but diagnosed with PD has lower incidence of RLS.

Twenty-four investigations looked into PD populations of 2 types: de novo or treated PD, with some investigating mixed cohorts. The frequency of RLS varied substantially across countries and studies. In patients with de novo, untreated PD, the prevalence of RLS was not significantly different from controls in population-based studies from Norway (15.3% vs 9.6%)11 and Italy (lifetime prevalence of RLS in PD 5.5%, controls 4.3%12), with prevalence of 16% RLS in untreated Korean patients with PD.48For patients with treated PD, RLS prevalence is generally higher than expected. The prevalence of RLS in Thailand was reported to range between 0.98% and 1.2% for consecutive patients with PD (untreated and treated) and 3% in Singapore vs 0.5% in ethnically matched controls. In contrast, in India, a study found 7.9% RLS in consecutive patients with PD vs 0.8% in controls,49 and 12% in patients with treated PD vs 3% in controls in Japan.e24 In a cross-sectional study from Canada, patients with treated PD showed a significantly higher prevalence for RLS (21%) compared to controls with pain 4.1%.e25 Similar increases (up to 16%) found in Korean patients with treated PD correlated with the duration but not the dosage of dopaminergic treatment.e23 This is of note as another study found an inverse correlation between the dopaminergic dosages for PD with RLS.e26 In European and US studies, the percentage of RLS in treated PD varied between 11%e27 and 24%.e26 When applying the 3 epidemiologic questions reflecting roughly the 4 essential criteria of RLS, one large studye28 found a 4-fold increased risk for PD in patients with RLS in a US male population, but only for the first 4 years after assessment.

Little_apple profile image
Little_apple

Random article but references studies I want to look up

wellnessmama.com/health/res...

hercules957 profile image
hercules957

I have a mild RLS occasionally (not every night). I am speculating that RLS can be minimized with exercise 30 min before bedtime or if the exercise was extensive during the day. I also experimented with massaging the soles of my feet using a rubber prickle ball, a ball that looks like a virus in soft rubber. At first gentle pressure and later I try to stand on them which massage the feet, is a form of exercise and works on balance. Of course this is anecdotal.

Daisies22 profile image
Daisies22

Hello, I have found this peer-reviewed paper quite informativencbi.nlm.nih.gov/pmc/articl...

Little_apple profile image
Little_apple in reply to Daisies22

“Approximately 20% of DA-treated RLS patients were prescribed doses above the approved and guideline daily maximum. Pramipexole, Neurology as specialty, and patient age were independently associated with HIGH/VERY HIGH DA dosing. Increased education is warranted regarding risks of high-dose DA exposure in RLS.”

Thank you for this link. After reading this elsewhere, I realized my sudden onset of extreme RLS is likely due to my taking Azilect , the DA agonist. Now I’m not sure what to do.

Daisies22 profile image
Daisies22 in reply to Little_apple

The attached screenshot is from an interview with the author of the paper. You could also try to contact him - he is the corresponding author but I really don't know how helpful this would be.My Neurologist never told me about the downside of the DA. I am trying to discontinue Rotigotine and it is a living hell. You have my sympathy.

Good luck.

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