Advice for a newby?

[Anfisa]

Hello. I had a heredity predisposition for RLS. It kicked in with a minor stroke last year (was 71). Then RLS was present but only in a minor way. Then disappeared. But came back very strongly coinciding with the start of Lockdown for Covid-19 (perhaps a link there)? It's now suddenly severe at nights. No chance of any sleep. Suddenly I feel in a seriously bad place with the Exit doors locked.

[Hidden]

Hello Anfisa. I am sorry to hear both about your stroke and about your current situation.

Just to clarify things, I wonder if you had RLS symptoms before your stroke. I ask this because you say you have an inherited predisposition and if this case, it seems unusual that you could reach the age of 71 without having any symptoms.

Also, I wonder what symptoms you're actually experiencing.

I ask these because I always think it worthwhile to confirm that someone really does have RLS rather than some other condition that might appear to be RLS. In your case, as a consequence of a stroke. This is one of the diagnostic criteria for RLS i.e. that symptoms have no other explanation.

Here's a link to the diagnostic criteria. If your symptoms match the criteria, then the probability is that you do have RLS.

irlssg.org/diagnostic-criteria

Assuming you do have idiopathic (inherited) RLS, then you are correct in thinking that it can be "triggered" by something.

I guess that there is a slight possibility it may have been triggered by your stroke. It's also possible, if the onset of covid 19 is causing you great anxiety, that this has triggered your symptoms. Stress can trigger RLS.

It's more possible perhaps, that there is some other trigger and the covid 19 is coincidental.

It's good if a trigger can be found, because it may determine how to deal with the symptoms. i.e. by temoving the trigger.

A possibility is that there is quite a long list of medications that are known to trigger RLS. I wonder then if you were started on any new medication following your stroke or shortly before covid 19. These may have directly or indirectly triggered RLS.

RLS can also be the result of other medical conditions, I am particularly thinking of anaemia, in your case, but also circulatory issues in your legs, neuropathy, diabetes, thyroid dysfunction or kidney failure.

It is important that you consult a doctor. I realise this isn't easy at this time, but there are some blood tests that can be carried out which would be informative. These could include not only tests for anaemia and diabetes but a "ferritin" test. A ferritin test is significant for RLS as one of the factors in RLS is iron deficiency in the brain, (NOT just the blood). For folks with RLS it can help to have higher ferritin levels than "normal". Normal is anything over 12ug/L. For RLS it's better if it's over 100ug/L.

You can if you like, start on taking an oral iron supplement. This won't unfortunately be immediately effective, it could take months to work. The best way to take an iron supplement is to buy a "gentle" iron and take it in the evening on an empty stomach, every OTHER day. Also to take it with a glass of orange. This minimises the side effects of taking the iron and maximises its absorption.

You may also find taking vitamin B12, vitamin D and magnesium helpful. Magnesium can also be used in the form of tablets, a skin cream.or oil or as bath (epsom) salts.

Celery juice can help. (tablets).

Avoiding alcohol can particularly help, as well as avoiding refined sugar and you could try avoiding caffeine.

Other non-pharmaceutical remedies that may help are leg stretches, hot baths and for some people, compression stockings. The latter I'd say, might not be a good idea if you've had a stroke.

You may get suggestions for other non pharmaceutical remedies from other members of this forum which you could try.

I would warn that some of them may not be that well informed so should be viewed with a healthy scepticism.

The issue with non pharmaceutical remedies for me is that they often either only help to a limited degree, take a long time to be effective or don't help at all.

I'm now assuming that you haven't taken any medication for RLS before. If you have please say what, what dose and for how long you've been taking it. This medication may be actually what's causing your current problem.

If you want a more immediately effective remedy, I'm afraid you may have to resort to medication. Unfirtunately, although there are medicines which can be effective, all have risks and side effects. Once you start on a medicine you become dependent on it.

Finding a medication that works for you isn't simple. It partly depends on the level of expertise the prescribing doctor has. Primary care doctors (GPs), tend to lack a good knowledge of RLS and this is also true of many specialist neurologists. (RLS is usually classed as a neurological condition).

If you're not sleeping some doctors may suggest sleep medication. This can either be a benzodiazepine (e.g. clonazepam) or a "Z" drug. These aren't a great idea, they might be of some use in the short term and don't really relieve symptoms. Z drugs aren't a great idea for older folks. Melatonin should also be avoided if you are older.

Some doctors will still be describing a class of medicines known as "dopamine agonists" (DAs), as the first treatment for RLS, pramipexole, ropinirole or rotigotine. (These go under various brand names). Although these can be immediately very effective for RLS - in the short term, they are no longer recommended as a first treatment, because they can end up making RLS worse, in the long term. They also cause insomnia. They have other side effects.

The current generally recommended first medicines for RLS are a class known as alpha 2 delta ligands, gabapentin or pregabalin ( again various brand names). These are not as immediately effective as the DAs, but can be effective after a few weeks. They don't have the same longer term problems as DAs and can relieve anxiety and promote sleep. They have some side effects however such as drowsiness. dizziness and stumbling when walking. These can wear off after a while, but some people find they persist. Some people put on weight and they can affect your vision to varying degrees.

I always say that you have to weigh up the benefits of a medicine aginst its risks and side effects.

The other medicines that are useful for RLS are opiates. These aren't easy to get a prescription for because of their risks.

In the short term codeine can help relieve RLS. It's not the best opiate for RLS, but in the short term (only) may help. Codeine can be obtained in over the counter paracetamol and codeine (various brand names). Follow the instructions!

There is a lot of other stuff I could write, but that's probably enough for now.

If you live in the UK, I could give you more relevant information.

In the mesntime here's a link to an article you may find helpful.

uptodate.com/contents/treat...

[Anfisa in reply to Hidden]

Hello Manerva

Thank you for your very comprehensive reply. I appreciate this.

It is a case of feeling my way through this.

Step by step.

I had, in fact, experienced restless legs (without a diagnosis) when I was young, but only very rarely.

I understand it can run in families, and when I tell my daughter about it, she understands because she also has these experiences too - rarely.

My restless legs experience last year immediately preceded the stroke.

Was woken up with very lively restless legs (both legs); and then the actual stroke followed.

After being discharged from hospital (only in one night) the restless leg continued (right leg - the side of body affected by the stroke).

This calmed down over a matter of months (and was not severe) and then disappeared.

To return again co-incidentally (or not) with Lockdown.

With Lockdown I have also (co-incidentally or not) experienced for the first time what I think is what's called (in USA literature) Functional Heartburn. This can be brought on by stress. This has now eased off significantly, and is not even a bother to me now.

So. My gut reaction is that the restless legs I'm now experiencing is resulting from stress of the whole Covid situation. I haven't been aware of stress, really haven't, but I think it has "turned in" on me and is expressing it through my body (I am a dancer, so my body is very much my instrument).

To help myself I am enhancing those things which I reckon help. Fundamental to this is refraining from doing what I was doing - reading too much about the pandemic on social media, and overmuch trying to support friends and family - to the extent that restless legs were triggered.

I'll add that my body is very intolerant of medications. This has proved a big issue with post-stroke medication. I've needed to take the route of herbal medication (under the direction of an experienced herbalist), acupuncture (again an experienced practitioner) and Yoga.

That is where I am now.

With very best wishes

[LotteM]

Hi 👋🏻 and welcome. Sorry to hear of the RLS flare up with this current Covid-19 lockdown. Your story brought to mind what happend to me in my early 30s. I changed work, country and - most importantly - mode of transport. Previously I had travelled almost exclusively by bike, daily to work (1/2h) and back and to sports and friends appointments in the evenings and weekends. Then I had to switch to going almost everywhere by car. And I started to wake up every night several time, having to move my legs, thus doing excercises etc for 10-30min before I could go back to bed again. Never knew it was RLS at that time; didn't know until some 20years later.

So - has your movement pattern changed a lot since the lockdown? If so, first thing is to find exercises to help you mimic your pre-lockdown activity pattern. Youtube is full of free workouts, try to go for at least one good daily walk and/or consider buying what we here in NL call a 'home trainer' (exercise bike?).