hi i'm howard and i make stuff for bbc
real
for a long time now can't quite remember
when it first started my legs and arms
seem to have been gaining minds of their
own
you know i'm not talking about learning
algebra or reciting nietzsche
i mean they seem hell bent on making me
want to go and run a marathon in the
middle of the night
or go and play tennis when i'd rather be
in bed
surely not i hear you cry that's
impossible cut down on the caffeine and
the sugar
well it's actually a condition of the
nervous system called restless leg
syndrome or rls
aka willis ekbond disease it can affect
around 10 of people globally
there's actually a bit more to rls than
its name suggests i also get it in my
arms and normally only in the evening
and at night
it can be unbearable and overwhelming
thankfully mine is quite mild but it can
last for hours it can lead to very
little sleep and become pretty
debilitating especially for those who
suffer from it very badly
the causes could point towards some
genetic factors at play
professor claudia trenkwelder is a
pioneer in rls research
she suggests that those who develop it
may already carry some genetic traits
that may make symptoms more likely to
develop for developing restless leg
syndrome i think you need
two factors you need a genetic
background and there are up to
23 genes variants known now
you need at least one or maybe two or an
interplay between some of these variants
but then
there is also the need for an
environmental factor julian spinks is a
general practice doctor in england and
the chair of the charity rls uk he also
suffers from rls himself
there are two main variants of restless
leg syndrome
the first is a standalone condition
where people tend to develop it
most severely in middle life and onwards
but about a third of people say that
they developed it before the age of 20.
so it can be a lifelong condition the
second
variant of it is secondary restless leg
syndrome and that's where there's
another condition which tends to cause
it and the most common ones of those are
iron deficiency
chronic kidney disease and unfortunately
some women develop it during pregnancy
and it only goes away when the pregnancy
is finished
i got in touch with another sufferer of
rls julie gould to compare our
experiences
while not a medical professional julie
is what's called a patient expert and
recently had an article published in the
lancet calling for better training in
rls symptoms for uk healthcare
professionals
imagine i was a wire cog being wound up
wound up wound up as tightly as tightly
as can be
and
then
no release that's
the nearest i can equate it to someone
winding my body up so tightly
that the only thing you can do is let
the energy release
but it just didn't release so it was
unbearable and an internal feeling of
just wanting to my whole body wanting to
scream
and the only release from that tension
was to physically harm myself
because the pain
was preferable to that unbearable
tense wound up creepy crawly
sensation
it's impossible to describe
now there are a host of treatments
available depending on severity first of
all sleep hygiene and a good night's
sleep is vital some people also find
things like hot baths or showers or even
cold showers can make a difference so we
will start with that because we want to
try and reserve the medication for later
amongst the medications uh the one
that's been used the most are called
dopamine agonists and these are a group
of drugs including primary pixel
repinerole and a patch called
when i was first diagnosed i was put on
diazepam for about six weeks and it
worked very well
then it stopped working and my ms
neurologist at the time said there was a
wonderful new drug available called
ropinarol
and that he would prescribe that
sure enough it was miraculous first
night i took it it stopped all those
horrible unbearable sensations which i
was been getting every night and i could
sleep fantastic
fast forward
14 15 years and augmentation of symptoms
set in
the doctors just shook their heads
didn't know what i was talking about
and i said it's got worse it's become so
intense it's unbearable i can't sit
still in the day
ropinarole is from a group of drugs
called dopamine agonists
now this kind of drug can help reduce
rls symptoms in the short term
but has been found to cause augmentation
the worsening of symptoms in the longer
term
julie went on to explain that after
being prescribed further drugs for her
condition her symptoms only got worse
the only thing you can do is to slowly
reduce the medication and you'll
probably need opioids to help
augmentation and withdrawal from
dopamine agonists
it was the most
horrendous experience of my life
i nearly did not make it through i
seriously considered suicide i'm a very
logical
person i'm a lawyer i've never been
depressed in my life never suffered
anxiety
but it was so utterly unbearable that
you literally get non-stop
rls symptoms in every part of your body
24 7. my symptoms are miraculously zero
because i've done all my research and
i've got on the buprenorphine which has
been absolutely miraculous unfortunately
when you look at the guidance of the uk
it's still pushing people towards
dopamine agonists and
the latest international guidelines from
the mayo clinic are moving away from
that and using the pre-gabilans and the
gabapentins as well
it all paints a rather confusing picture
because rls is still a poorly understood
condition awareness can vary
maybe depending on which country you
live in or even who your doctor is
here's julian again to describe what the
situation is like for general practice
doctors gps here in the uk
unfortunately restless leg syndrome
doesn't appear on the curriculum
at medical school and in the
postgraduate training so it's very much
depending on what you've met what
interests you do most gpa are aware of
the condition and how to diagnose it the
problem comes with treatment
particularly when patients are running
into difficulties
because they will be looking at guidance
which actually is slightly out of date
unless they know about the new
international guidance
so what could diagnosis for rls look
like in the future
i think diagnosis should always consider
the
the entire human being
all
comorbidities and and all medical
history if you
diagnose rls for the first time
and then you should consider what should
i do maybe with the knee surgery it's
just then
it's a problem that
that may start for some weeks until you
your knee is fine again you are better
giving no medication
and just just waiting or or give some
sleeping pills for two weeks and
and and don't do anything not to induce
the
dopaminergic path here and to start with
the problems of augmentation
well i found this whole journey utterly
fascinating and eye-opening
it seems awareness and research into rls
is slowly changing the landscape
but not nearly fast enough considering
how common this condition seems to be
here's dr julian spinks with a final few
words for anyone who thinks they might
be suffering from rls symptoms
uh i find that people will delay going
and seeking help
often until their restless leg syndrome
is really quite severe and i think it's
because often they may not have heard
about it
or they may have previously seen a
doctor who actually misdiagnosed it what
i would say is that you know if it's
getting to a point where it's really
interfering with your life do go and
seek help i'd also recommend having a
website including the rls uk website
which will give you information that you
can take to your doctor to perhaps
convince them this is the condition
but don't suffer in silence it is
something that it's worthwhile seeking
helpful
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