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Newsletter
54 April 2008
EKBOM SUPPORT GROUP
Dear Friends,
Allow me to introduce myself, my name is Beverley Finn. In October I was
approached by Prof. Chaudhuri and Eileen Gill, the founder and co-ordinator of
Ekbom Support Group (ESG), as to whether I would consider taking on the role
following the retirement of Eileen. I was happy and honoured to do so.
As you can imagine there have been many changes made since Eileen retired and
the possible delay of the April Newsletter was inevitable as Prof. Chaudhuri is
now very busy being involved in many more lectures and meetings now that he has
attained his Professorship. So, for this Newsletter it will be a joint effort.
Prof. Chaudhuri will have his input with his medical expertise and myself,
talking about how we are hoping the ESG will continue to grow and expand in the
future.
As we start a new journey together let us lift our hopes up high for a new
medication that may rid us of this emotional and physically draining condition.
For some of us the drugs available are adequate to relieve our symptoms of RLS.
At the same time some of us have it so severe that the drugs we take only
slightly dull the effects of RLS. We still need research and results in order
for us all to be rid of this condition. Saying that, can we now imagine life
without the drugs we do have available to us?
RLS still continues to be unrecognised by a large proportion of the
medical profession. What do we have to do to make these doctors realise that we
are in pain and are sleep and rest deprived. When will they realise how this
affects our lives, our relationships and our work?
My life has taken on a new purpose since becoming the coordinator for the
Ekbom Support Group. No sooner had I taken on the role of running the group than
I was invited to go to Brussels to join representatives of a number of European
countries who are looking to form a
European Alliance Group for Restless Legs Syndrome. We are in the process
of forming the group and intend to take our case to the European Parliament to
get this condition more recognised and to encourage more research. In order for
me to carry on my role of representing the UK branch for RLS I now intend
forming a small steering group to help me run the ESG. Eileen ran this for 20
years solely by herself, and she does deserve recognition for that, but in order
for ESG to move on we must now become a registered charity so that we may have
the benefits that the European countries have. These benefits would include
being able to accept any monetary help from Pharmaceutical companies perhaps
without the worry of possible repercussions. We have our first meeting in May in
London and I will keep you posted on progress in the next newsletter. I have
chosen five people beside myself who I know from our membership who have the
same interest in seeing the ESG move
forwards. Eileen has given me her blessing on this and I shall keep her informed
on every detail as we progress. I still work very closely with Eileen who has
been my constant source of support with her wealth of knowledge gained over many
years. I would also like to mention Paul, our webmaster, who works very hard for
us all on keeping our website running smoothly and keeping it up to date.
For many years I myself have suffered
with this condition and have the passion and drive to help all new and existing
members. In the past I have been invited by Prof. Chaudhuri to give
presentations at meetings and have been invited by pharmaceutical companies to
give presentations on what life is like living with RLS. I have also been
involved in the making of medical training videos for this condition.
There is a new product to be licensed later this year, but I will leave Prof.
Chaudhuri to write about the details of this.
Finally I have had a telephone line installed at my home for help and advice.
This line will only operate on MONDAY and THURSDAY MORNINGS between 9am and
11am.
Please adhere to these times as there are insufficient available funds to cover
the cost of calling people back who leave a message. Should you need to leave a
message please DO NOT use a mobile telephone as we cannot cover the cost.
And the telephone number is 01634
260483
I would also like to thank you for
the kind donations and stamps we receive.
It may be necessary to draw your
attention to the next Newsletter. Please send me a new self-seal A4 SAE and put
your reference number in the TOP LEFT HAND corner and the number of the
newsletter you want in the BOTTOM LEFT HAND corner, tucking in the flap so that
it does not get stuck down in the post. All enquiries must be accompanied by a
SAE and overseas members should send 3 international reply coupons instead of
stamps.
I will say goodbye for now and leave
Prof. Chaudhuri to cover his part of this Newsletter.
With Best Wishes
, Beverly Finn.
Professor
Ray Chaudhuri’s Column: Hello,
for those of you who do not know me, I am a
neurologist at Kings College and Lewisham Hospitals and founded the academic
research and educational group called RLS:UK
in 2001 with the remarkable Eileen Gill. It was very sad when she stood down
from her ceaseless, tireless and unflinchingly unselfish role as the
co-ordinator for the ESG but I am delighted that we have found Beverley to take
up this essential and crucial task. RLS remains
poorly portrayed, often trivialised and often mis-diagnosed and mis-treated in
the UK and as such Beverley will play a crucial role bridging the information
gap between yourselves and the medical community in particular.
The
newsletter format, as you have noticed has changed a bit. It will have a column
from Beverley as well as me to bridge information and science. As the cause of
RLS remains unclear there are hundreds of information sites in the internet,
there are hundreds of individual accounts of “cure”, there are many many
claims to remedies. I am afraid, many of these claims and information are
unfounded, non-scientific and at times could be dangerous to health. I will
therefore, aim to provide a scientific account of the “news” related to RLS.
Feedback from you will be very important too.
So
what is exciting and new in the world of RLS? There have many scientific
meetings in 2007-2008 which dealt with RLS and the associated disorder of PLM
(periodic leg movement: a condition when the leg jerks either as you are about
to doze of or when you are asleep). The most exciting discovery is that there
appears to be more pointers towards a genetic basis to this condition with the
independent discovery of three genes that may be related to RLS. It must be
emphasised however, that as yet there are NO specific genetic tests that are
available for RLS. These discoveries suggest potential genes that may be
responsible for development of RLS in some and much work is needed in future.
Firstly Winkelmann
and colleagues described a gene called MEIS1 (on chromosome 2) associated
with RLS and this gene tends to be involved in development of limbs. Thereafter,
Stefansson
and colleagues described another gene called BTBD9 (on chromosome 6).
Finally, Winkelmann
and colleagues also described another gene involved in the action of an
enzyme nNOS. Potential implications of these discoveries are huge and in future
this may open up new ways of identifying and treating RLS.
From
the treatment point of view, in the last years, two
drugs were licensed specifically for treatment of RLS and these are pramipexole
and ropinirole (marketed specifically for RLS as Adartrel). Both are useful
but not all patients respond to these. In future we expect
that Rotigotine, a skin patch that works by being
applied once a day would also be licensed for RLS. Like the other two, this is
also a dopamine agonist drug and also is used primarily in Parkinson’s
disease. IT IS WORTH NOTING HOWEVER, THAT USING THESE DRUGS IN RLS DOES NOT MEAN
THAT THERE IS ANY RISK OF DEVELOPING PARKINSON’S DISEASE.
It
is always worth having your iron levels
checked in particular a test called “ferritin” level
which is a protein that binds iron in the blood. Low ferrtin levels need to be
treated with iron tablets and may help symptoms of RLS.
There
have been some concerns related to the use of dopamine agonists particularly
older ones such as cabergoline. Cabergoline is an excellent dopamine agonist and
clinical data suggest that it has a huge effect in alleviating symptoms of RLS
but in some cases (in Parkinson’s disease) the use of this drug has been associated with thickening of heart valves
(valvular fibrosis). It must be emphasised that this is rare and not everybody
on cabergoline has this and that for many cabergoline is an effective treatment
that needs to be continued although the doctor should monitor the status of
heart valve regularly (six monthly or yearly by using ultrasound
(echocardiography). Also in a small minority of patients taking dopamine agonist
a pattern of behavior resembling
addiction may emerge. This may be in the form of excessive shopping, gambling,
sexual activity etc. This is rarely a problem but if you or your partner feels
this is worrisome then it is best to discuss it with
your doctor. Once again this is a rare problem.
In
some cases RLS may need treatment with non dopamine
drugs and commonly used ones are gabapentin and pain killers such as tramadol.
Magnesium may help some people. In some additional medication for sleep may also
be required. Clinical trials are under way addressing new formulations of these
drugs as we speak.
And
that is all I have for you this time. Summer is almost here and the nights will
be shorter. I hope the symptoms of RLS are less or shorter
for you too. Ray
Chaudhuri
Newsletter
53 October 2007
EKBOM SUPPORT GROUP
Dear Friends, After a lovely September, it is feeling very autumnal now.
The shorter days make us feel the need to draw
the curtains, put on the heating and sit down much earlier than before,
which is not so easy to do for some of us with RLS. Thankfully, with the advent
of the two drugs, licensed for RLS, many more members are enjoying a more
restful time than previously, and hopefully, the long dark days of winter will
not seem so unbearable. There are one or more trials of drugs for the
relief of RLS ongoing at this moment and we hope it will not be too long
before they are licensed.
I would like to thank you for your continuing support
of the ESG with your letters and generous donations. This has enabled us to
get some repairs done and replacements of some necessary equipment. Some
members have yet to get to grips with the new stamps system and are not
putting on the right amount for the size of their SAE. This means we have to pay
the excess and causes delays in the post for returns, not to mention people
who still do not enclose a SAE with their enquiries. Please make sure you
do enclose a SAE with all your correspondence that needs a reply. Thank you.
The third meeting of the RLS: UK in conjunction with
the Sleep Medicine Section of The Royal of Medicine was held in London on
Thursday, 31". May, 2007. Sadly, it was not so well attended as we had
hoped because many GPs that we had invited did not appear. This seems to
prove the theory that RLS does not rank high on their
agenda and still seems to be unimportant in the medical profession
compared to other problems. However, the people who did attend found it a
very interesting meeting, Professor Chaudhuri gave an address to the attendees
who all gave us a warm welcome. He spoke on the Cause and Effect of RLS and
how to diagnose it. Dr. Williams from St.Thomas' Hospital, London, spoke
about how RLS and other sleep related disorders, such as insomnia, are
dealt with in the clinical laboratory. Dr.Spinks from Kent discussed RLS and the
effect on the Quality of Life. This aspect of the condition is often missed
by our GPs and not considered as seriously as it should be.
As some members of the medical profession still believe RLS is a
"made-up" disease, Dr. Stillman, from Leapfrog Medical
Communications Ltd., a General Practitioner from West Sussex, gave us a
Doctor's view and I gave the Patient's view of RLS. Mrs. Gillian
Young, the first member to join the ESG, gave her version of how RLS affects her
and how she deals with it using an exercise method devised by Dr. Peters.
Afterwards, the panel of speakers had a general discussion and concluded, in
spite of the low attendance, the meeting was very interesting and
successful in bringing the subject of RLS to the attention of the audience.
The next meeting is expected to take place in the
spring but the date and venue will be announced later. Details will be put
on our website on the Internet and will appear in the
next newsletter, if possible.
At this year's American Academy of Neurology 59" annual
meeting, one of the presentations included the subject of Sleep Disorders,
including Restless Legs. According to Dr. John Winkleman, data from the Sleep
Heart Health Study suggested that RLS is also associated with
cardiovascular problems as well as sleep disruption or sleep deprivation. He
suggested that periodic limb movements of sleep were increased 7 times in those
with RLS and are associated with increases in blood pressure.
A recent study from the University of Montreal discovered the
that during periodic limb movements, blood pressure can be raised considerably
and this could lead to heart damage or even stroke,
especially in the elderly." It remains to be demonstrated whether treatment
of RLS can reduce coronary vascular disease," said Dr. Winkleman.
At the same meeting, after a study of 29 adults with
ADHD, (Attention Deficiency Hyperactivity Disorder) it was revealed that 20.68%
had Restless Legs Syndrome. All subjects had mild RLS based on the International
RLS scale and The Quality of Life Questionnaire and apparently, this was higher
than expected, according to Dr. Rochelle Zak, who recommended that doctors be
alert to the possibility of RLS in adults.
I know there is a general opinion that only children
suffer from suspected ADHD, and I have had many enquiries from parents who
suspected that their children might have RLS too. Now, it seems this may be
applied to some adults too. Further studies of the possible connection of sleep
disorders with other medical conditions is likely to improve our
understanding of such conditions as Restless Legs Syndrome.
Because RLS is not a life-threatening condition, people
are not getting proper treatment. Some people take inappropriate medicines to
try to relieve their symptoms, such as over-the-counter herbal treatments,
painkillers and anti-depressants prescribed by their doctors. Sufferers often
find it difficult to describe their symptoms, as these may seem to be rather
bizarre. Mild cases can be relieved by lifestyle changes as suggested in our own
list of remedies. These include avoiding caffeine and alcohol, taking regular,
daily exercise, (not near bed-time), establish a regular sleeping pattern, if
possible and having a blood test to rule out anaemia. More awareness of this
condition and its treatment is required.
One piece of good news is that an international team of
researchers have identified the first gene associated with RLS. The work was led
by scientists at Emory University and deCODE Genetics, Inc., in Reykjavic,
Iceland. This discovery provides strong evidence that RLS is a real condition, a
fact that has been the subject of recent debate, such
as at our own meeting in London. "We now have concrete evidence that RLS is
an authentic disorder with recognisable features," said Dr. Rye, professor
of neurology at the Emroy University of Medicine. "We have known for quite
some time that the majority of RLS patients have a close family member with the
disorder and now we have found a gene which is clearly linked to RLS," he
said. Some of us are already aware of this discovery and are helping Professor
Chaudhuri and his associates with a similar study in London and elsewhere. Let
us hope it will not be too long before the study is complete and the results can
be published to convince the sceptics that the condition that Dr. Ekbom
described in 1945, really does exist.
In 1987,when first I
realised I was suffering from the same condition as my mother and that my eldest
son was showing signs of it too, I wrote to an "agony aunt" who had a
page in a magazine, asking if she would put my letter in her column to see if
any other person had the same symptoms as I had. She did and also referred me to
"Share-a-Care", an organisation for people with "unusual
conditions", to whom I also wrote, hoping to hear from some one else like
myself. Unfortunately, "Share a Care" had not been contacted by any
other RLS sufferer but advised me to keep in touch.
My letter was put on the page of the magazine's
"agony aunt" who suggested I started a support group for the people
who replied and had a similar condition. So began "The Ekbom Support
Group". Letters flooded in and soon I realised this condition was more
common than I thought. I spent hours in libraries, researching everything
I could find about leg conditions, until one day I came across a condition
called "anxietas tibiarum" which sounded like my symptoms. (In the
1940s Karl A Ekbom redefined it as RLS.) As it is also known as Ekbom's
Syndrome that is the name we use for our support group.
Armed with this information, I went to London to see a
consultant who was very sympathetic to me, although he didn't know much about
the condition. He wrote to my GP to see if he could prescribe something for me,
which he did. As the ESG grew bigger, my dream was that every sufferer from RLS
could eventually benefit by this or a similar drug. We are hoping it will not be
too long before a cure is found.
( Webmaster note - some of the information in the next paragraph
have been altered for the sake of clarity so check here
and here for the latest
information if you want to make contact).
Now, 20 years and 20,000 enquiries later, I feel I have achieved
my dream and can hand over to the professionals for them to carry on and find
the cause of this condition, and, if possible, a cure. So, after this
newsletter, we shall have a new co-ordinator,
one of our members, Mrs. Beverley Finn, who will answer your letters.
Professor Chaudhuri will write the newsletters in future and Suse Tluk, RLS
nurse will send them out. Suse will take your phone calls too.
Paul Kelly, our Webmaster, will continue to run the website and edit the
Topica discussion site. Send all your letters to the Ekbom Support Group,
c/o Mrs. Beverley Finn, 42, Nursery Road, Rainham, Gillingham, Kent, ME8 OBE.
E-mail: bev.finn@yahoo.co.uk
Try to send NEW SAEs that are self-seal and make sure they
are large enough to take the literature you have requested and that you have put
on the necessary postage. Please make out cheques to "The Ekbom Support
Group". Do not send cash but stamps are very
acceptable. All phone calls to: Suse Tluk: 0208-333-3030 Extension 8060.(At
present, this number is used also for The Parkinson's Advice Line until a
separate line can be set up.) Webmaster: e-mail: ekbom@mcb.net
Now, I would like to thank all those who have helped and
supported me for the last 20 years. These include Professor Chaudhuri and
members of the RLS/UK, Suse Tluk RLS nurse, his private secretary, Jill
Faal, Paul Kelly, our Webmaster, Pearl Sugden, my part-time secretary and all
our members who have helped create the Ekbom Support Group and supported me over
the last 20 years. Also, grateful thanks to Carol Coles and the "crew from
Clew" for their help to create the ESG database
In case you are wondering what I shall do with all my
"spare time", I shall be trying to revive my sadly neglected garden,
aiming to improve my piano-playing technique, visiting my family more, trying to
trace my ancestors via the Internet and supporting Beverly while she is getting
to grips with the Ekbom Support Group. So, I have in mind plenty to do and I
expect there will be even more waiting for me that I will discover as time goes
on. I shall still retain an interest in the ESG and the RLS: UK and try to make
my own contributions to the discussion group from time to time.
Now, all that remains is for me to say, thanks to
everyone and goodbye.
I wish you all a very Happy Christmas and peaceful New
Year.
Best Wishes to you all.
Eileen.
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Newsletter
April 2007 Number 52
EKBOM
SUPPORT GROUP
Dear Friends, Thank you for all your letters, donations and stamps.
I hope you all had a nice Christmas and Happy New Year. It seems so long
ago now, especially with the good weather we have had recently that makes us
think it is time to start saving for next Christmas already! Here, we have
had an unusually dry, mild winter again and the garden looks more like summer
than spring. I am sure we shall pay for it before too long.
If you wonder what we do with your completed questionnaires, we do not just file
them away and forget them. If the members have given their
permission, the forms are used for research and analysed by professionals in
RLS.
We do appreciate sufferers who return the questionnaire sent to them and we have
just completed a survey of 500, which shows that RLS is poorly recognised in the
UK with delays to referral for treatment exceeding 10 years. This is not
acceptable and must be remedied by educating the medical profession even more
than we all are at present.
Of the 500 patients analysed, 332 were definitely confirmed to have RLS
based on the 4 criteria used to test for the condition. 76% had symptoms at
night, while 5.1% had daytime RLS. Types of attacks included both legs in
63% of cases: one leg only 4.5%: both arms and legs 15.5%:
legs and whole body 3.8%. Of the patients who had consulted their GPs
regarding treatment, among the treatments offered were, quinine,
antidepressants, analgesics, benzodiazepines, levadopa and dopamine agonists.
Complimentary therapy, including acupuncture, homeopathy and herbal treatment
were used by some and in some cases specific exercise and hot showers were
helpful.
In the UK, many RLS patients remain undiagnosed and many reported they had not
consulted their doctor. Among those that had, quite a few reported that their
doctor was not interested. As I have said before, you can always ask for a
second opinion. Ask your GP to write a letter of referral and phone your
local hospital for an appointment to see a Consultant Neurologist or ring
0208-333-3379 to see our Dr. Chaudhuri privately.
Thank you to the members who replied to the question about drinking alcohol
while taking ropinirole. There were many people who wrote to say they had
the same problem and that drink made the RLS worse. Also a few who said it
didn't affect them at all. We do recommend that you do not consume alcohol when
you are on any drug, especially dopamine agonists and the solution seems to be
that one remains teetotal or put up with the consequences.
Then there is the question of Compulsive Gambling which has also been discussed
on our Forum and also in the Press, where it was noted that younger patients
whose personal or family history includes alcohol abuse may be more likely to
develop pathological gambling as a side effect of medications used to treat
their condition. In studies examining the relationship between dopamine agonists
and compulsive gambling, the likelihood of gambling problems was unrelated to
the medication dosage. This suggests that an underlying trait may
interact with the drugs and make an individual more vulnerable to this adverse
effect.
There is the problem of augmentation, when RLS starts earlier in the day than
previously, increases in severity and often spreads to the upper limbs. This
problem can occur from long-term use of dopamine drugs. One answer may be to ask
your GP if you can try a different medication, but you may be asked to see a
Consultant Neurologist first to rule out any other problem that may be causing
it.
Many of you have asked me about peripheral neuropathy (P/N) again. Speaking from
experience, I know how painful and distressing this can be. Some drugs
prescribed for RLS can exacerbate it rather than cause it, especially if taken
over a long period. P/N causes a painful burning sensation in the feet, usually
starting at the ankles and travelling down to the toes, which can feel cold all
the time or alternatively tend to feel as if they are hot and be described by
sufferers as burning all the time. Walking is made difficult because
sometimes one cannot feel the ground underneath them, and there is a fear of
falling over ever present. Up until now, this condition has proved
difficult to treat, as it can vary from one person to another. Some
members are trying out the drug Gabapentin, which is often used to treat painful
RLS as well as P/N. Pregabiline, similar to gabapentin, can prove helpful
in some cases too. Try keeping the feet warm in winter, even if you have
to wear bed socks! In warm weather, try sitting with the feet in a bowl of
cool water, followed by massage. The foot spa has been recommended or a
professional masseuse will give you a session for about £10 per half hour.
Rotigotine, another drug on trial for RLS, is in its second trial phase now and
showing positive results, with a significant reduction of symptoms of RLS.
It is used as a skin patch and the most common side effects seem to be
application slight reactions. Schwarz Pharma AG the manufacturer said:
"We have seen another promising set of results underlying the efficacy and
safety of rotigotine in RLS". Of course, because ropinirole and
pramipexole (Adartrel and Mirapex) are the only drugs licensed for the treatment
of RLS, it appears that they are the most commonly prescribed, but there are
many drugs useful for the condition and maybe eventually, doctors will prescribe
a mixture of them to be used in rotation. It may also be the answer for
augmentation, which can be caused by over use of one drug used continuously.
I am constantly being asked if I know of a remedy for a good night's sleep,
especially in connection with RLS. I would like to be able to say I do,
but unfortunately no one person will benefit from the same remedy, even if I did
know of one. However, there are many things that can help, including the ones we
suggest in our own patient information sheet. Having said that, if your GP
agrees, he may send you to a sleep clinic of which there are several in the UK.
For those who are not on the Internet and may like to know where they are, here
are the names and addresses of some.
Papworth Hospital, Papworth Everard, Cambridge CB3 8RE.
Respiratory Dept., Bristol Royal Infirmary, Bristol.
Southern General Hosp, 1345,Govan Road, Glasgow.G51 4TF.
Dept of Medicine, Charing Cross Hospital, London. W6 8RF.
Lane-Fox Respiratory Unit, St. Thomas's Hospital. SE1 7 EH.
Sleep Assessment and Advisory Unit, Lisburn, Ireland.
Sleep Disorders Centre, St. Thomas's Hospital, London.
For a full list or to find out if there is one near you, please send a SAE to
us.
One
Lady member says she finds Tea Infusion Ginger Root has given her such relief
after trying numerous other remedies.
Some complementary tips sent in are; Tarantula 6C: £10.45 for 10 ampoules, from
The Nutri Centre. Tel: 0207 436 5122.
Agaricus 6C: £7.15 for 10 ampoules. Available from the above.
Acupuncture
has proved to be useful to many people who have written to us.
We
recommend you to have a cool shower, go for a walk, take some gentle exercise,
massage, cut down on caffeine, stop smoking, if you do. Keep the bedroom cool
and bed linen light and if possible, all cotton. Keep the room airy and
use a quiet fan in summer.
Do not resort to sleeping tablets as they can be addictive and eventually will
cause more problems such as augmentation. When you become dependent on sleeping
pills, they become addictive and habit forming. When stopped, you may get
withdrawal symptoms, which can exacerbate RLS. Taken over a long period, they
may not work unless the dose is increased and eventually you could find you
cannot sleep without them. Our advice is not to start them at all.
Stress can cause insomnia as well as RLS. Try to create a calm atmosphere
by listening to some light music instead of watching a TV horror film!
Try not to have late night telephone conversations so that your head is buzzing
over what was said or problems caused by the caller. If you go to work,
don't bring the problems home with you. Leave them there and let someone
else deal with them if possible.
There has been some controversy about the Magnetic leg wraps. It has been
discussed on our Topica mailing list forum. But I must say I have
had as many letters praising the product as I have had from people who did not
find it useful. I have used it myself and so has another member of my
family. Also, a friend who is trained in Homeopathy uses it herself and
has found great relief. Incidentally, the gentleman with the drink
with ropinirole problem, now uses the leg wraps and reports them to be
"fantastic and worth every penny!"
We
are having terrible trouble with the Post Offices' pricing in proportion (POP)
and are having to pay extra on quite a few items which are being delivered to
us. In the UK, posting to the UK, for a letter you can use a C5 envelope
to post four sheets of folded A4 paper or up to 100 grams weight (envelope size
not to exceed: 240mm x 165mm and no thicker than 5mm) The present cost
(April 2007) is 34p for first class post (and 24p for second class). For
anything else please consult the Post Office web sites - perhaps start
here on the Internet. (For our very first note about this please
our see our news item here).
Spring is here again and the nice light evenings. Let us all get out and
enjoy it while it lasts.
Until
October, Best wishes to you all.
Eileen
Gill
Eileen
Gill. (Co-ordinator for the Ekbom Support Group).
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October 2006
Number 51
EKBOM
SUPPORT GROUP
Dear Friends,
Thank you for all your
interesting letters and kind donations to us. The last six months
have been very busy one way and another, and we were fortunate to have another
lovely summer here but still not enough rain. It has been very windy too,
which has dried up the poor plants as soon as I have watered them.
However, as I sit here at my desk I can still see lots of colour around and a
lovely green lawn that was looking very scorched not so long ago.
By now, most of our members will know that Mirapex (pramipexole) and Adartrel
(ropinirole) have been licensed for the treatment of RLS. I am sorry that
the news came just too late to be included in the last newsletter, but for
people with access to the
Internet, the word quickly spread. Many people have been in touch to let
us know that they have obtained one of the drugs and found swift relief.
Unfortunately, the news does not seem to have got through to many GPs yet and
they have been in touch with the ESG for advice on the dosage etc.
A follow-up study on pramipexole in the treatment of RLS showed it had major
effects on RLS symptoms without severe side effects. Also, clinical trials
have assessed the benefit of ropinirole in improving RLS symptoms and found it
significantly improved sleep disturbance and adequacy. Both these drugs
are dopamine agonists and are now considered the treatment of choice for
RLS.
If you would like a list of all treatments for RLS, including the above, log on
to:-
http://www.remedyfind.com/HealthConditions/101/?All=1
and there you will find them all in alphabetical order.
As a result of publicity in Woman's Weekly and That's Life magazines, some
members have sent in their own tips for the relief of RLS. One lady
suggests a hot wheat bag, which can be put in the microwave and heated for 2 ½
minutes. For this go to
sales@thenaturalwheatbag.co.uk
Tony from London
suggests The Electric Body Activating Vehicle from The House of Bath. It costs
about £70 and he uses it for 15 minutes at a time.
Sally says she has tried all the usual remedies and none of them made any
difference to her RLS but recently she tried the water remedy. When she
gets disturbed at night, she gets up and drinks a whole tumbler of water, not
sipping it but gulping it down. Going back to bed her RLS has gone!
So she pleads, to anyone who is not on medication, please try this remedy
and you never know, it may work for you.
One gentleman who was using the Magnopulse Leg wrap to help him get over keyhole
surgery on his knee has discovered it has stopped his RLS. Other members
have reported good results from this product too. I have used the magnetic
back wrap for years and have recommended it to many back sufferers. So I
was pleased to read a recent survey on the effect of the Magnopulse Leg Wrap on
RLS and that, out of 460 people who tried it, 88% had benefits from the
device. Greater than 50% had a marked reduction in their symptoms
too. Needless to say there is more to this magnetic treatment than
was first thought. If you want to know more about it, phone: 0117 9710 710
or go to http://www.magnopulse.com
Members not on the Internet who would like more information about this product,
please send me a SAE marked M/I.
John has found something that totally stops RLS for him. He puts a tubular
elastic support bandage just below his knee over the affected area.
Result: almost immediate relief (less than a couple of minutes), cessation
of all symptoms and a return to a good night's sleep. It never fails, he
says.
Joseph has recently been using Balmosa Cream from his local pharmacy but it can
be obtained from Forest Laboratories UK Ltd., Bexley. DA5 1NX. He says it
is worth a try.
Clinical Trials are
currently in progress to study the drug Istradefylline for the treatment of RLS,
sponsored by Kyowa Pharmaceutical. The primary purpose of this study is to
evaluate the efficacy, safety and tolerability of 40mg per day of this drug in
patients with RLS. The study was started in July 2006 and is expected to
be completed in November 2006. We await the results with interest.
A gentleman from London writes to say that RLS is no laughing matter, but during
one of his sleepless nights, whilst listening to Gilbert and Sullivan's
"H.M.S. Pinafore", he changed two of the verses. If you know the
music and don't think he is being too flippant about a serious matter, we
thought you might like to read it.
Never mind the why or wherefore, Restless Legs I do not care for,
You will damn the fates that curse you.
As it ruins all your sleep and none is near to nurse you
As spent from your bed you creep.
How on earth you'll ever make it. Breakfast you will never take it,
As to work you'll have to fake it. It makes you want to weep.
Never mind the why or wherefore. My twitching lower legs are bare for
Both my calves need some kneading when I suffer RLS.
Could the Gods but heed my pleading life would be much less a mess.
Will I function in the morning? Look another day is dawning
I'm so afraid I can't stop yawning. Well it's back to bed I guess.
The RLS: UK meeting was held on Friday, 8th. September 2006 at Kings College
Hospital, London. Only six members were able to attend, owing to previous
engagements. I was disappointed that this meeting was the first one I had
missed, as I always find it very interesting getting news and views from other
members, but it was unavoidable this time. I hope to be able attend the
next one in May 2007.
Dr. Chaudhuri, Dr.Williams, Dr.Spink, Dr. Macmahon, Dr. Stillman, and Susanne
Tluk attended and various subjects were discussed. Due to recent
publicity, there appears to be some confusion about sponsorship to the RLS: UK
for research and education given, by industry. Although the ESG
works closely with the RLS: UK, we are here for support and to raise awareness
of RLS, while the research is left to the academic group, which includes
professionals such as neurologists, sleep specialists, haematologists and many
others. A statement to this effect will be posted on the RLS: UK web site
shortly.
Expenses were discussed,
for printing of the booklets and posters, as were travelling expenses to
meetings, various studies, and the appointment of a part-time coordinator for
Dr. Chaudhuri, together with the two days a month his RLS nurse helps the ESG.
Later next year, possibly June 2007, a half-day patient meeting will be held,
when subjects such as the views of pharmacists, GPs, psychologists and others
will be discussed. The date for this meeting will be confirmed later and
hopefully put in the next
newsletter.
Much has been written in the press and other sources, about RLS and
"disease mongering", insinuating that RLS is not a real disease, not
very common, exaggerated and even invented by pharmaceutical companies for the
sake of their profits. This has angered sufferers and the medical profession, causing them to write to these
ignorant people who have written these articles, expressing their contempt for
their insulting remarks. They are people obviously, who do not suffer from
RLS themselves or have to live with someone who does, or they have not even
bothered to speak to people with RLS.
While we all probably
know of someone who fidgets a lot, has disturbed sleep and complains of symptoms
similar to RLS, we know that RLS is a very real neurological disease, often
under diagnosed, but can be distinguished from other similar disorders by a
clinical diagnosis, including a blood test and sometimes sleep studies in
specialised centres. Then there are four essential diagnostic criteria for RLS
that are all necessary for a complete diagnosis. I wonder how many of
these journalists have bothered to do some research before making these unkind
remarks about us. Perhaps we should invite them to our next patient
meeting. When they hear the testimonies of sufferers who have many members
of their family affected by this distressing condition, how many have not had a
decent night's sleep for many years, how some have been so desperate, they have
had to
give up their jobs because they can't concentrate, how many have been forced to
live separate lives from their partners and how some have been driven almost to
suicide, I wonder if they would change their attitude towards us
"malingerers"!
After all the years of research into RLS, I am naturally very pleased that the
two drugs have now been licensed, but am rather disappointed to hear from
patients that, although their doctors have agreed to prescribe them, some have
little knowledge of the dosage and times they should be taken. Obviously,
your GP knows you better than we do, but every one can suffer at different times
and some more severely than others. I suggest you make it clear to your
doctor when your need is greatest, for instance evenings and nights, so that if
he suggests you take your medication three times a day, ask if it is ok for you
to
take it afternoon, evening and at bedtime. There is no point in taking a
tablet at breakfast time only to find you have none left by bedtime and you
spend the night tossing and turning because you are afraid to go against
doctor's instructions. Likewise, if you find, in spite of three tablets a
day, you are disturbed in the early hours of the morning, don't suffer in
silence, ask if you can have an extra or stronger dose at bedtime. Don't
expect miracles and complain if it doesn't work straight away, but give it a
chance and after a reasonable time, say a week, ask for further
instructions. Whatever you do, always consult your doctor first.
I apologise for any delay in answering your letters and phone calls last month
but hope we are all up to date now. The office hours are still Monday,
Wednesday and Friday from 10am to 2 pm but the answer phone is permanently
there. If your message is not urgent, would you please write in to
us? Leaving your phone number means returning your calls, which is adding
to our already hefty phone bill. Also, if you do write in for extra
information than normal, please make sure the postage is sufficient.
If you want the next newsletter, please try to send a new envelope that does not
need sealing down with extra adhesive tape. This takes us time and with
dozens to cope with, can be very frustrating. If you require back numbers
of the newsletters, please enclose £1.00 for four.
One reminder for new members:
Don't forget to make a
note of your membership number, before you return your questionnaire to us.
I do hope you all have a happy Christmas and a restful New Year and that the
winter is a lot warmer and shorter than last year.
Best wishes,
,
Eileen Gill
Eileen Gill. (Co-ordinator for the Ekbom Support Group).
top
April 2006 Number 50
EKBOM
SUPPORT GROUP
Dear Friends,
Here we are into April. It has been a long cold winter for most of us and it seems as if
spring will never come. Unfortunately, in this part of the country, we do not want it too
warm too soon, because of the chronic water shortage, but I know some of you have had
too much rain and snow and a glimpse of the sun would be very welcome.
Many thanks to everyone for your letters, cards, stamps and donations. Also, thank you to
the members who send e-mails to us from time to time. Those of you who do not have
access to the Internet will not miss out on information, because most of the news is
repeated in our newsletters, although it may be a little bit later getting to you.
The membership of the ESG grows daily, with many people offering to help with our
research. We are very grateful to people who have answered our requests for volunteers
and have been contacted through the ESG to assist medical research projects. Also, we
have been using some of the information gathered from your returned questionnaires, to
find out if there has been any advance in the treatment you have been offered by your
doctors. Some of you who attended the October 2005 meeting in London will remember
I said how disappointed I was not to see a big improvement in the way GPs were treating
RLS patients, after all the hard work we have been doing to inform them and other
members of the medical profession about our problems. So now we are hoping to prepare a large analysis of hundreds of your
replies and put together a paper that can be
presented to the doctors at the next RLS meeting, later in the year. I would emphasise
that we will use only the questionnaires from members who gave their permission to us
for them to be used for research and under no circumstances will any names or addresses
be given.
There are several companies involved in research to find a drug to improve the life of RLS
sufferers and I am hoping to have some news of their success shortly. I know you are
eagerly awaiting the good news and that some of you are absolutely desperate to get a
good night's sleep. I am pleased to tell you that, so far, we have heard that the drugs
ropinirole and pramipexole have been approved to treat moderate to severe Restless Legs
Syndrome in Europe. Now we are waiting for our turn and hope it will not be too long.
I must say I was very concerned to read in our daily newspapers, that certain drug
companies are accused of "inventing diseases to boost their
profits" and turning healthy
people into patients. One newspaper referred to RLS as "a newly identified, relatively
rare condition, exaggerated by the media". RLS is not newly identified, as we all know.
Although it is currently called RLS in common with all the other countries that have
researched it, we at the ESG have always known it as Ekbom's Syndrome. Thomas Willis
described RLS in 1672; Dr.Karl A. Ekbom identified it in 1946. and we have referred to it
as such since the ESG was formed in 1988. As for it being a rare condition, I would not
call 5%-10% of the population rare! Not one single day goes by without we get a call for
help from someone with RLS. In fact, I have also read letters in these newspapers'
medical columns, from desperate sufferers!
Dr. Graham Archard, vice - chairman of the Royal College of General Practitioners, was
reported as saying," It was inevitable that drug companies benefited from campaigns" (to
promote their drug) "and want to market it in the best way they can and if they can
increase awareness of a condition that may or may not exist, then a person may well
believe they have this condition and look for treatment. There is a limited amount of
cash in the NHS and if people are spending limited resources on areas that aren't terribly
important, that will detract from areas of greater importance." That is an insult to all of us
who have spent so many years researching this chronic devastating disease, to help
thousands of sufferers and their families to get relief from this torture. Dr. Archard would not make such cynical remarks if he suffered from RLS himself, and I would remind
journalists that we are not prescribed these drugs because we think we have RLS, but
firstly we must fulfil the four criteria for diagnosing
RLS, formulated by The International
Restless Legs Syndrome Study Group in 2002, and it has to be confirmed by a consultant
neurologist before treatment can be considered.
I shall be very interested to hear what our own RLS: UK group of health specialists have to
say about these newspaper reports, at the next meeting. Unfortunately, due to work
commitments, none of the group has found time to fit in a meeting so far this year, but it
is proposed to meet again for this year's AGM in London in the Autumn. However, it is not
finalised yet so I cannot provide the date or venue, but the details will be posted on the
Internet as soon as we hear. If you do not have this facility, you can go to your public
library and get information from there. They will either find it for you or let you use their
computer, which is usually free for the first hour or so.
You may have noticed that our ESG web site has been completely revamped by Paul, our
hard working Webmaster. He has obviously spent many hours slaving over his "hot
computer", chopping and changing articles to get it just right and up and running.
Therefore, I do hope you are all making good use of your computers and dipping into the
ESG site, to read all the latest news and even having your say on the forum. There you can
seek or give advice from other members, or if you have had an experience with your RLS
that you feel would be interesting to others, just send it to us by e-mail
or direct to the
forum ekbomsupportgroupuk
topica.com
. If you don't feel competent to write it yourself, just sent us the story and Paul will set it up on the site for you. You can send in a story even if you do not have a computer.
If you send in a story by "snail mail" to me and intend it for the web site, just remember to
give your permission for it to be published. Also, if you need a reply, don't forget to give
your full e-mail address or enclose a SAE. If you have found anything that has changed
your life (and RLS) , please let us know, so we can share the good news and maybe help
other sufferers. So don't put it off any longer, please.
One lady from Holland has written a humorous account of her efforts to convince her
GP that she was a RLS sufferer and needed medication. Most times she visited him, she had a
shower, put on her make-up, had her hair done, wore her 'Sunday Best' and when asked
how she felt, would begin by saying "Fine", but she got no satisfaction, So after she had
not slept for five nights, she made an effort to stay awake long enough for him to notice
how haggard she looked. He saw her greasy hair; breakfast spilled down her front
because she could not coordinate her movements and had missed her mouth, and told
him she felt like hell. She said there must be a moral in this because her doctor now
treats her with consideration.
It seems we all try to look our best when we go to see our doctor, but it does not mean
we will get treated any better than if we look like a tramp. What is important is to put over
the message as clearly and concisely as possible in the short time allocated to us and not
to hesitate at telling the doctor all the facts about our condition.
Another lady has written to say her husband has suffered for years, like his father did
before him, and spent every night walking about the house. After being advised by a
nurse, he started to eat a banana every day. She cannot believe the difference it has
made to her husband. He now sleeps all night and never has to get up as he used to do.
So she thought she would share her good news with us.
A gentleman from Bournemouth tells us that he wears bed socks all year round. He says
he has far less problem with RLS now. Personally, I am just the opposite and can't wear
anything on my feet, day or night unless I have to go out, because I would get overheated.
I know most of us with RLS feel the same, but this gent is happy and we are happy for him
too.
Many of you will have discovered that All Calm is suggested over and over again when you make a search on the Internet for restless legs
remedies. It can be obtained by post from All Calm, 23, Main Street, Antigonish, Nova Scotia, Canada. B2G-2B3.
Or bought via the Internet from http://allcalm.com/.
No doubt that many of you are suspicious of its frequent appearance in sponsored
search results or are suspicious of similar sounding products in the shops. But one of our members has recommended it
and you may want to try it. You may also want to read the material here.
All Calm seems to comes well recommended by our member and also has a money-back
guarantee.
Margery from Kenya emailed us to say that, after trial and error over the years, she has
proved, beyond a shadow of a doubt, that her RLS is caused entirely by what she had to
eat and drink on the days she had her symptoms. She knows she cannot eat anything
highly acid, which means citrus fruits, most raw foods, all wines and most drinks which
contain food preservatives and colouring. She says it narrows down her diet a bit but is
worth it for a good night's sleep, without those awful " kicking legs" as her family calls
RLS. She urges other sufferers to "listen to their body" and find out what disagrees with it.
I couldn't agree more.
This tip came from two members, so must be worth a try! From Bryher in Holland and
from Eve in Scotland, both suggest trying a product called a Chillow. It is a cooling pillow
and putting it under your head actually relaxes you. It costs £25. including delivery. You
can order it on the Internet at www.southsoft.co.uk or it can be bought from
BUPA Shops.
(I understand it is quite heavy, so you could not take it on holiday with you!)
Posted from the Daily Record newsroom is a new method to relieve RLS. It is called
"Virasana, the Hero Posture." ( Vira means hero or warrior.) Sitting on the floor with the
knees together and the feet apart, achieve the posture. The buttocks are on the floor
between the heels. You may find sitting in this pose something of a challenge at first, but
the use of a blanket under your shins may help. It is supposed to relieve tiredness and
fatigue for people suffering from RLS. Unlike many yoga postures, this one can be done
immediately after a meal with a full stomach. This sounds like it could be useful for
people who prefer not to take any medication. Why not try it?
Geoff who, optimistically signs himself Geoff (RLS no more) sent an e-mail to say he was
planning a body massage one rainy day, and was advised to try N.O.T (Neural
Organisation Technique) for his RLS. He was very sceptical at first but tried it and his
condition vastly improved. (More
information here). No more pain or jerking. It returned in a milder form a year
later but he found another person practicing N.O.T. and after 3 or 4 more sessions, to
date he still has no symptoms of RLS. He does not say where he got his information on
N.O.T. (maybe on the 'net) but would like to know if this helps anyone else. Please let
me know so I can pass on the good news.
For those of you (ladies) who cannot wear anything made from synthetic materials, like
myself, there is a pair of tights available made from
93% organic cotton with flat linked
toe seams, so they do not rub or irritate your skin. (Ideal if you also suffer from skin
problems such as eczema.) The manufacturers can also supply underwear and nightwear.
For more information ring: 01524-730-093.
Some of you have recommended using wheat bags that you heat up in the microwave. I
know what good relief can be obtained from these, especially if you suffer with backache
or similar afflictions because I had two bought for me at Christmas. Just recently I learned
that you should not spend too much time near or using a microwave if you have had a
pacemaker fitted. If not sure about yours, please consult your GP.
These are just a few suggestions that are sent in from time to time. Please let us know if
you try any of them and if you feel any benefit from it. Also, send in any tip that has
helped you, which you think is worth passing on. We do reiterate what we have always
asked you to do and that is to check with your GP that it is ok for you to take certain
preparations that may or may not be compatible with medications that you already take. If
you want to check on medications yourself, you can go to www.medicines.org.uk
. This site offers up-to-date information on medicines and changes in patient drug information
leaflets. The British National Formulary at www.bnf.org, (the Doctor's bible) has information on medicines and new
drugs available. If you are not on the Internet, you can
look at a copy at your library.
There is a new version of the Patient Information Leaflet on the ESG web site. Anyone
who cannot get it from there and would like a copy, please let us know and we will send
you a photocopy providing you send us a large SAE and 1st class stamp.
On the subject of SAE's I would ask you, if you were sending one in for any information leaflets or the next
newsletter, please send a new one, A4 or A5 if possible, and not one that has been used before, as we have to re-seal them with
sellotape or self-adhesive labels. This takes time and is expensive. Remember, we send
out hundreds and together with the paper and ink, printing and photocopying, not to
mention the upkeep of our equipment, if we have to buy stationery for members too, it
would mean we would have to charge a fee like some other support groups do, which is something we have not done before and do not want to do in the future. Please remember
to tuck in the flap, as it will get stuck down in the post. You can still have back numbers
of newsletters you may have missed, 25p each or four for £1. The next newsletter will be
sent out at the end of October 2006.
We will answer phone calls Monday, Wednesday or Friday, from 10 am to 2 pm.
Otherwise you will get a recorded message. Please leave a brief message and your phone
number for us to call you back.
I do hope you all have a lovely summer this year: we certainly need it!
All my best wishes,
Eileen Gill
Eileen Gill. (Co-ordinator for the Ekbom Support Group).
October 2005 Number 49
Dear Friends,
I cannot believe that another year has almost gone by and all
the shops are displaying their winter stock. We have been so fortunate to have
had another good summer, very warm at times and not enough rain, as usual, but
the gardens are still ablaze with colour. Now that the daylight hours are
getting less and there is not the time to work outside, I shall be taking the
opportunity to look up some of my ancestors (on the Internet) and hopefully
getting in touch with long lost friends. Sadly, I have lost the incentive to
take my daily walk in the park since I have had to part with my beloved Golden
Retriever, Faith, due to her having developed leukaemia. She was such a happy
dog and knew every word I said. I miss her very much and know her friends in the
park miss her too, but am grateful that we had been able to have ten happy years
together.
I would like to thank you all for your letters and donations:
also thanks to those who sent us holiday postcards, (to make us envious!) and
for your experiences, advice and tips on living with RLS. For people with access
to the Internet, there are more experiences to be read on our web
site.
We were all deeply saddened to hear that one of our early
members, David Blake, had died on the 24th. June 2005. David was an
active member of the ESG: always willing to help where possible, volunteering
for trials, etc. He suffered severely with his RLS and he and I were two of the
first members to try Ropinirole, in 1997. We are glad to know that, at last he
is at rest after his years of suffering. Flowers were sent on behalf of the ESG
and we gratefully acknowledge receipt of a donation to us from his daughter,
Sarah.
I am pleased to say the RLS: UK meeting at the BMA House in
London this month was very well attended. Over 80 people registered and most of
them came on the day including many GPs. Members of the RLS: UK spoke on
their specialist subjects relating to RLS. Beverley Finn and myself presented
the patients’ viewpoint.
Dr. Richard Allen, PhD, Assistant Professor of Neurology at
the John Hopkins University, Baltimore, Maryland, USA was the keynote speaker.
His lecture was on the role of iron in RLS. He noted that secondary causes of
RLS involve problems with iron balance and brain iron insufficiency may be one
major cause of RLS. Dr. Allen hopes that further understanding of the causes of
RLS may eventually lead to better treatments or even to the prevention of the
disorder. Research is continuing in the RLS brain studies. Although 700 people
are now registered to become brain donors, still more are needed. Last year 210
people enrolled in the program and so far this year, 43 people have registered.
The RLS Foundation urges people to participate in this program, as it will
provide hope of a cure for millions of RLS Sufferers. For details, write to RLS
Foundation, 819, Second St. SW, Rochester, MN 55902, USA.
As many of our members know, when they first approach us for
information on RLS, we advise them to ask their GP for a blood test, if they
had not had one since they became aware of their RLS. This is because iron
deficiency is an important contributor to the development of RLS, especially in
elderly patients. They can often be treated with iron supplements and this can
produce a significant reduction of symptoms. Of course, one must not begin any
kind of therapy without first consulting their doctor as this could cause
serious problems.
It was a pleasure to meet some members of the ESG who, until
the meeting, were only known to us by name. Some people had travelled great
distances to get to London and I hope they were pleased with the program we had
for them. A new speaker, Dr. Jane Speight from Uxbridge, gave an interesting
talk on The Quality of Life in RLS. This is something that we are continually
striving to improve and with the advent of the new drugs, hopefully soon to
become available, we shall be able to address this problem.
Some members were pleased to tell me that their own GP was
attending the meeting but unfortunately there wasn’t time for me to speak to
all the participants. However, it is gratifying to know that GPs are taking
RLS more seriously now as, until fairly recently, although very common, it was
relatively unknown and under diagnosed. It can range from being "just a
nuisance" to being severe enough to warrant medical treatment and Doctors
will not be able to diagnose it unless given all the facts. So it is essential
that it is not trivialised but taken seriously like so many other medical
conditions, and only then can the correct treatment be offered.
The impact on the life of the sufferer must be stressed, and
one important fact is the lack of sleep. Sleep deprivation has a very serious
effect on our daily lives and can lead to many problems such as inability to
hold down a job. One may be unable to drive a car, even look after the family,
enjoy social activities or travel, and these can eventually lead to depression
and other problems which can be debilitating and very distressing. So don’t
suffer in silence for fear of being refused a sympathetic ear, go to your GP and take with you our information sheets and insist he/she reads all about it
and, if necessary, refers you to a consultant.
Whatever degree of RLS symptoms you may have, it is very
important for you to talk to your doctor. He may prescribe medicine or just
recommend a change in lifestyle, but he can certainly help you to lead a better
and more restful life.
There are now several drugs that are used for RLS but, as
yet, none are licensed for it here. I am constantly being asked what they are
and when they will be available. Firstly, it is up to your GP or consultant,
which drugs he will prescribe, and it may be more than one. Some are more in use
than others but it does not mean they are any better or more effective. Also,
some have more than one name, (such as in the USA) and that can cause confusion.
I know many members are now able to have Ropinirole, but it
is only licensed in Germany and the USA at present. Also, different
pharmaceutical companies may give the drugs different names that are not
familiar to us here but there is always a leaflet inside the packet for you to
read which will explain the content of the drug, how to use it, side effects if
any, etc. and you must read it.
Secondly, you can always ask your Doctor what he is
prescribing and what you can expect from it and providing you have given him
all the facts, you will be given something, which he thinks is suitable and
available. If you tell him only that you have cramp at night and cannot sleep,
for example, you may not get what you expect for RLS. He is not a thought-reader
and possibly may not know much about RLS. It is up to you to give him as much
information as you can.
There seems to be some confusion about some of the conditions
that may be present with RLS so I thought I would try and explain some of them.
Restless Legs Syndrome or Ekbom’s Syndrome is a common
movement disorder, that we all know about, and is diagnosed by four essential
criteria:
1) A need to move the legs, accompanied by unpleasant
sensations.
2) Exclusively present or gets worse during periods of rest
or inactivity.
3) Partially or totally relieved by movement, such as
walking.
4) The sensations or need to move is generally worse or
exclusively at night.
PLMS (Periodic Limb Movement in Sleep) is experienced by most
patients with RLS and consists of jerking movements, such as flexion of the
ankle, knee and hip, accompanied by brief awakenings, resulting in sleep
disturbance and subsequent daytime sleepiness.
PLMD (Periodic Limb Movement Disorder) is diagnosed when the
patient has had a sleep study, (polysomnographic) and met the specific
criteria for PLMS or complained of fatigue.
Many conditions may mimic RLS, such as peripheral neuropathy
(which has symptoms usually felt only during the day and not relieved by
movement): intermittent claudication, made worse by leg movement and relieved by
rest: Akathisia which is an inner sense of restlessness accompanied by a desire
to move: Nocturnal leg cramps which are painful spasms of the calf or foot,
which may occur in pregnancy, in the elderly, in diabetics or after exercise:
and sometimes in children suffering from attention deficit hyperactivity
disorder.
Different conditions usually require different treatment, but
if you are prescribed a drug that has more than one use, don’t presume you
have the other condition or will develop another condition as well. I emphasise
this because I have had many worried members asking me if they will develop
Parkinson’s disease because their GP has given them a drug used for Parkinson's Disease.
Due to publicity in several magazines recently, some readers
have been keen to send in their remedies for the relief of RLS.
One reader sent in a tip her daughter found for her on the
Internet. It was New Rebuilder 2405 System. If anyone has tried it, I
should be pleased to hear from him or her as I have not even heard of it but
there is a link here.
Another writer sent in her self-help remedy, which is to not
to eat anything highly acid, which means, she says, all citrus fruits, most raw
foods, all wines, and most drinks out of a bottle which contain food
preservatives and colouring.
A gentleman recommends Antistax,
a cooling leg gel, another
mentions again the benefit of taking Magnesium
at night.
An early morning phone call brought news of a drug called Primidone,
used to treat Epilepsy, but recommended by a GP for RLS.
If any members have to attend hospital for a MRI scan and
have a long history of RLS, they may worry if they will be able to control their
legs during the procedure. News comes from the Department of Anaesthesia and
Perioperative Medicine in Carolina that if other drugs do not alleviate leg
movements, a drug named Physostigmine can be administered which can eradicate
all extraneous leg movements.
This year, Dr. Richard Allen presented Sheila Connolly with
The EKBOM Award in recognition of her leadership and achievement as an RLS
advocate.
Sheila has been involved with RLS research since 1990 and
started the Boston Support Group in 1992. She was chairman of the RLS Foundation
from 1996-1999 and served on the board of directors for 9 years. We send our
congratulations to Sheila.
I have been informed that Allen O’Bryan has left the RLSF
in Rochester and our new contact is Beth Osowski, Director of Public Relations
and Communications.
The RLS Foundation celebrated the 2005 RLS Awareness Day on
Friday, 23rd. September, and their 2005 RLS awareness week 19th
- 25th September.
Their National Patient Meeting will be held on Friday, 11th.
and Saturday 12th. November in Orlando, Florida. The meeting
offers leading experts the opportunity to speak about the latest advances in RLS
research and treatment. It will also give patients and families a chance to
exchange ideas.
I hope to be able to report on the meetings in a later
newsletter.
Please Note: Don’t forget to send your SAE for the next newsletter. If
you require back numbers, please enclose £1.00 for up to 4 copies.
When phoning, at anytime, please please leave a contact number for a reply.
I hope you all have a happy Christmas and a peaceful New
Year.
Best wishes,
Eileen Gill
(Co- ordinator Ekbom Support Group)
April 2005 NEWSLETTER: No. 48