Hi, I am a new member to the group so just working out how things go so apologies if this message has been sent already. I have suffered from restless legs syndrome for many years and was recently referred to neurology and was started on baclofen taking it before going to bed. I work as a support worker looking after children with disabilities which involves working days and nights, sometimes I get both days and nights in the same week which can be difficult to deal with especially if my sleep has been disturbed inbetween my day shifts! I was wondering whether it is advisable to work night shifts when suffering from restless legs syndrome as it is difficult to get into a good night time routine if your swapping between days and nights and whether, if anything, can be done about it?
Any advice would be appreciated.
Thanks
Written by
Linedancer41
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Hello and welcome to the forum, I hope you find it helpful.
Sorry to hear you suffer from RLS. You may discover from reading other posts in the forum, that generally it's quite a common experience that doctors aren't very knowledgeable about RLS, (even neurologists), and unfortunately people suffer as a consequence.
If baclofen is the first medicine you've been prescribed, this is both a good and a bad thing.
It's good because it means you haven't been prescribed a dopamine agonist which many neurologists still do. out of ignorance.
It's bad because it's not usually prescribed for RLS basically because it's not very effective. In which case, unless there's some special reason for prescribing baclofen then the neurologist is either experimenting on you or just totally ignorant of how to treat RLS.
I'm sorry, that's probably not what you want to hear.
Te current medicines that are known to be effective are a dopamine agonist (DA), an alpha 2 delta ligand (A2D) or an opiate.
Sometimes, particularly if somebody isn't sleeping well a doctor may prescribe a benzodiazepine which has some muscle relaxant properties, but this is usually at the same time as a DA or A2D.
Baclofen is just a muscle relaxant and not recognised as suitable for RLS. So if you find it works, I am quite surprised. It may be a placebo effect.
The first meds specifically used for RLS were the DAs. These are very effective for RLS and usually eliminate symptoms the first time one is taken. However, using a DA can lead to severe complications after a while. in most cases this may be a few years, in some only months. When they have to be stopped, it is very difficult to withdraw from.one. Fir some people, impossible.
The A2Ds have more recently been found to relieve RLS and don't have the complications that DAs have. It's also easier to withdraw from one. It's not generally got round to all doctors yet, but overall it's better to try an A2D first rather than a DA.
Opiates can be effective for RLS and are usually reserved for severe RLS when the DAs and A2Ds have failed. Very few specialists will prescribe an opiate as a first treatment for RLD and bery few will prescribe one anyway. This is partly because of the "opiate crisis".
I'm afraid the second thing you may mot want to hear is that NO it.isn't a good idea to work night shifts if you have RLS.
Part 2
RLS is classifued as a sleep-movement disorder which means it's related to our circadian rhythms. Apologies if you already know this but there are various things taking place in us that vary, usually in a 24 hour cycle, hence circadian.
This includes rises and falls in various hormones and neurotransmitters, brain chemicals and also various processes. This 24 hour cycle is regulated particularly by exposure to light. This become apparent when we travel.across time zones and suffer "jet lag". Jet lag is where our circadian rhythms are out of sync with the local night-day cycle. It can take a couple of days to re-sync.
Generally speaking changes in hormones and neurotransmitters should enable is to sleep at night and be awake in the day. With the advent of electric lighting it is possible for us to modify these circadian rhythms which in some ways is good, but it has led to an awful lot of people suffering insomnia.
If someone always works night shifts, this isn't good, but it's possible to avoid light during the day (when sleeping) and to use electruc lights at night (when awake). It's possible to re-sync from days to nights and vice versa, but it does take days to re-sync. If you change from days to nights and back again, basically, and putting it crudely, you're screwed! That is, even if you don't have RLS. Disrupted curcadian rhythms can cause chronic physiological stress and health probllems, even reduced immunity and cancer.
I assume that actually when you're working nights you are allowed to sleep, but I'm not so sure that any sleep you get will not necessarily be good quality. I also.imagine your circadian rhythms will at best be confused.
In RLS this is particularly important because one of the factors.in RLS is a dopamine dysfunction (a neurotransmitter). As a consequence of this dysfunction whenever and for whatever reason dopamine levels fall, then we experience RLS symptoms at their worst. Naturally, one of our circadian rhythms is that dopamine levels drop at night. Hence,.that is why one of the diagnostic criteria for the diagnosis of RLS is that it's worse at night and that's also why RLS medicines are taken at night.
If constantly changing shift patterns is constantly changing your circadian rhythms, especially dopamine levels, then it's difficult to predict when is the best time to take a RLS medicine, (even if it wad thevright one).
It just depends how severe your RLS symptoms are and how much they restrict what you can do and psrticulsrly how it affects your sleep as to what your options are.
Ideally, it would be best for you to never do night shifts and to take an (effective) RLS medication at the same time every day, i.e. 2 - 3 hours before bedtime.
I appreciate that puts you in a difficult position, I'm really sorry.
What else can you do?
It might help if you were prescribed a medication that's known to be effective for RLS rather than one that isn't.
It would still be best to take it the same exact time every day. This is crucial, some people set an alarm on their smartphone. I've been doing that for years.
There are reasons, in your case,that a DA may be better than an A2D, because they're dopaminergic. However their horrendous complications means I can't recommend one. Assuming you woukd be unable to get a prescription for an opiate, this leaves an A2D as the only realistic option. Not ideal as they make you drowsy, which is great if you're allowed to sleep, but if you have to wake up, it could be very difficult.
There is a possibility that innyour cade, althougj normslly an A2D for RLS is only taken at night, you coukd split the dose, morning-night. It may he a matter of trial error in gettingbthevdose and timings right. A slow rekease version is another option if one's available.
THE GOOD NEWS is, there are other options for managing RLS.
An option that is more fundsmental.in RLS is to correct iron deficiency.. This is a major factor in RLS which I'm guessing the neurologist didn't mention.
It isvfound that levels of iron in the BRAIN is lower in people with RLS.than for people with no RLS. This Brain Iron Deficiency ((BID) isn't necessarily related to.iron deficiency anaemia. Anaemia can cause RLS, but BID in primary RLS can exist even when there is no sign of anaemia.
It's good therefore to have bloodvtests for serummiron, transferrin, gerritin snd hsrmoglobin.
Ferritin is the significant result. In order for someone with RLS to have the same brain iron level as somebody without RLS ferritin needs to be about 200ug/L. Yours won't be!
In practice 50% of people with RLS benefit from raising their ferritin to at leadt 100ug/L. If your ferritin is below 75ug/L then it can be raised by taking an oral iron spplement. If your ferritin is akreafy over 100, then raising it higher 2oo or even 300 may work.
Taking oral iron may take at least 3 months to raise ferritin to 100. However if it's alresdy over 75, which is unlikely ( " normal" can be as low as 15), then you'd need IV iron infusions. Tgese cannrelieve RLS without medication for up to 24 weeks for 60% of people. Unfortunately not so easy to get one.
Deficiencies in magnesium, vitamin B12 and vitamin D if corrected( using supplements) can relieve RLS too.. Msgnesium applied locally i.e. as a gel or oil can relieve RLS symptoms when they occur, temporarily.
The other major thing you can do for RLS is to look at triggers or aggravating factors, but i'm going to have stopnwriting now - fatigue - more and more and more typing errors.
Thanks for your reply, I will look into the options you mentioned, my gp and the neurologist mentioned iron levels which I already knew was a contributing factor in RLS, my results came back normal. Can the gp/neurologist write something for my employer to explain about my condition and that working nights is not beneficial?
As regards your iron level. Quite often doctors tell people their iron level is "normal".
Unfortunately this just tends to demonstrate their ignorance. What they usually do is look at your results and compare these to a table of "normal" values. When your result fits in the range of what's " normal", then they think, that's OK then, it's normal.
For example I have been constantly told for years that my level of a particular antigen is "normal". The reason they say that is that the level is quite low i.e. greater than zero, but within the "normal" range. The problem is, the tissue that produces this allergen was supposed to have been totally surgically removed. Thus, my level of the allergen should be ZERO. It isn't! It used to be every time they said it's normal, I'd have to ask, "Yes, but what is it?* They'd say it's only X. Then I'd say, " That's not good, it should be zero. "
The level of iron in the brains of people with RLS is lower than it in people who don't have RLS. That's the problem, i.e. brain iron deficiency, (BID).
There is no blood test for BID. However there is a blood test for "ferritin". It's known that the level of ferritin in the blood correlates with the level of iron in the brain.
A blood ferritin level of 15ug/L (fifteen) or more is "normal". For someone who does not have RLS then, with a ferritin level of 15 their brain iron level will be OK.
However, for somebody with RLS to have the same brain iron level as someone who doesn't has to have a ferritin level of at least 200ug/L. (TWO HUNDRED).
Hence, you can see that "normal" is meaningless. You have to say "Yes, but what is it?" If they say it's any number between 1 5 (fifteen) and 100ug/L (One hundred), then you probably have BID. In which case raising your ferritin level at keast to 100 will give a 50% chance of relieving your RLS. Better still getting it higher 200 - 300 would be even better.
Hopefully you can see that being told it's "normal" is not at all helpful and might just demonstrate their ignorance.
Unfortunately, RLS isn't recognised as something which creates "special needs*, so there's no legal requirement for any employer to make "reasonable adjustments".
You could ask a neurologist to write to your employer and hopefully your employer will consider it. They can refuse however.
You might also find some literature about circadian rhythms and RLS as a circadian disorder and show your employer, this might help.
E.g. this is a link to the entry in the International Classification of Diseases (version 11) for Restless Legs Syndrome, you can see it's coded as a "sleep related movement Disorder".
I had no RLS sleeping during day after nightshifts until my RLS became much worse. Others report when able to sleep in late that they do so without symptoms during the day.
This would be due to less deep sleep, and associated melatonin and dopamine levels.
Anyway, shift work is bad for you, and as I have done it most of my life I don't expect a long lifespan. It is what it is.
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