relief for restless leg syndrome

[CAMACA]

any advice to provide relief for my 83 yr old mother with HF condition, she finds it difficult to sleep/relax/sit still because her legs are so restless.

Any ideas will be most welcome, thank you!

camaca

[Celtic]

RLS can be caused by a magnesium deficiency. Perhaps ask the Dr for a blood test to check for deficiency and whether a supplement might help. I find eating a magnesium- rich diet can help - a small handful of dried apricots is a go-to for me.

[CAMACA in reply to Celtic]

THANK YOU so much for your prompt reply

[Kristin1812 Heart Star in reply to CAMACA]

it’s a horrid affliction! Changing statin (to Resouvaststin) has helped a bit, but it hasn’t gone completely. Might be worth a try?

[CAMACA in reply to Kristin1812]

Thank you I will speak to GP

[Parminter]

I strongly suggest you join the RLS group on Health Unlocked. You will find a great deal of useful information there.

What meds does your mother take? Many common meds worsen RLS, including almost all anti-depressants, almost all anti-histamines and almost all OTC sleep meds.

Also, what is your Mum's ferritin level? Low brain iron is central to RLS.

First-line meds for RLS include gabapentin and dopamine agonists, but getting iron levels up is the first move if they are low, and adding magnesium as a daily supplement will help a bit.

She must also learn stretching exercises for the legs, to be done several times per day - it helps in acute situations.

Now back to suggestion number one - join the RLS group.

[CAMACA in reply to Parminter]

thank you for kind advice, Mum is on Ramipril, Pravastatin, Paracetemol, Frusomide & Warfarin.

We do daily leg massage & she walks as much as possible & frequently around home but her mobility is compromised due to fluid build up & fatigue.

I'm not sure on ferritin level, I did discuss Gabapentin with GP, but not possible.

I will join RLS group, thank you.

[Parminter in reply to CAMACA]

A very good site to look at is rlshelp.org - this is the outreach portal for The Southern California RLS Group, associated with Stanford University.

On the site there is a way to send an e-mail to Doctor Mark Buchfuhrer of Stanford. He is one of the few outstanding experts in this awful condition - most doctors do not have a clue, frankly, and often do more harm than good. He answers every query he gets. Do not be afraid of writing to him, after you have read all the literature on the site - which you can trust completely.

Those of us who have severe RLS have come to understand that it is a 'DIY' disease, and we have to become very knowledgeable. Doctors can resent this, so you may have to tread quite delicately.

It is, by the way, a neurological condition, not a 'leg' condition.

Just anecdotally, I have seen a number of patients reporting what they think is a link between worsening symptoms and statins, but I have not seen it in the medical literature.

It is a complex condition, and every patient is a bit different, so it is worth trying different things.

Your Mum will probably get a dopamine agonist such as Pramipexole suggested by the doctor. Read about 'augmentation' before you go that way. It works very well, but there may be problems ahead, so be forearmed.

The doctor may consider an opioid in a very low dose. (But the NHS seems very opioid-averse). Opioids work extremely well.

Another site that is outstanding is the Restless Legs Foundation of the USA. To get access to all the information you need to be a member (the best money I ever spent), but you can read quite a lot without membership . It is at rls.org

Nobody can live with this horror without support, it is just awful. Your Mum is lucky to have you.

Good luck.

[CAMACA in reply to Parminter]

Thank you so much for taking the time to reply so comprehensively

I will explore the ‘sites’ you have mentioned

Her GP is reluctant to prescribe any medication directed related to RLS

I’m aware it’s neurological; is it also due to poor circulation?

Thank you Parminter

[Parminter in reply to CAMACA]

No, poor circulation will not help, but is not the cause. The cause is an inability to store iron in a part of the brain called the substantial nigra. Thus the necessity for a ferritin test, which is a fairly accurate way to gauge how much iron there is in the brain.

So we can have 'iron deficiency without anaemia', meaning that the usual tests do not show a deficiency.

If ferritin is below 70 to 100, (for the RLS population, not the general population), then supplementation is necessary. It does not always work, in which case IV iron is called for.

Iron levels MUST be attended to, and for a lucky 30% sufficient iron will resolve it completely. Another 30% will get some relief.

About 65% of RLS is inherited. But many women have RLS during late pregnancy, and some of them continue to suffer it afterwards.

Did your grandmother have it? If so, expect to appear in the next generation.

[CAMACA in reply to Parminter]

Thanks

my mum has always had iron deficiency, I remember her having iron injections during pregnancy ( albeit it 55 years ago)

I will get her ferritin level checked

Kind regards

[Parminter in reply to CAMACA]

That may be a factor, indeed. If she is unable to absorb iron, then IV iron infusion will be easier to obtain. Read about iron on the websites I suggested.

It is very difficult to get iron into the brain - the rest of the body gobbles it up first. Brain last, which is odd.

So, after an infusion, it may takeup to three months before the brain gets what it needs.

[Tillymint1971]

My doctor prescribed pramipexole - I was skeptical but it has worked a treat. Highly recommend.

[CAMACA in reply to Tillymint1971]

thanks very much

[MichaelJH Heart Star]

Hello and welcome to the forum! Someone I worked with years ago - lot older than me- took very early retirement (50). About 20 years later he developed RLS. After trying various treatments Gabapentin proved successful but may be contradicted by your mother's other medication. I am convinced stress played a part. After retiring he brought a property overseas but never rented either out. He also never worked again despite some good offers so ended up in financial difficulties!

[CAMACA in reply to MichaelJH]

thank you

[scotsrish]

Restless leg, jump leg is horrible. For me i found the more i exercised or hiked the worse it would get. It would start way before i went to bed and then like an antsy jig all night. Antihistamine, advil and sometimes tylenol could also trigger it plus some foods. First off is an old wives cure which really helped. Put a new natural bar of soap between top and bottom sheet and change every couple of months i did not believe this at all and was pleasantly surprised. Take 250 mg magnesium at night before bed. I live in Canada and swear by CanPrev brand. Hope this helps.

[CAMACA in reply to scotsrish]

Thank you for your help

[CAMACA]

Thank you so much for your reply

[CAMACA]

one ... very large!