"It would be expected that any doctor who is a generalist dealing with patients with RLS would inform themslves sufficiently to provide or coordinate the appropriate care for that individual and involve specialist services when required."
The RCGP have supplied me with some extracts from the GP core curriculum.
In relation to "managing complex and long term care" these include
a) Managing the uncertainties around treatment options
b) Using the patient's own experience to optimise their clinical management.
c) Caring for the whole person.
d) Practising holistically
Although there appears to be no specific mention of RLS in the GP curriculum, there is this approach to chronic conditions incoporated into the curriculum.
The above then is what you should expect of your GP.
In addition it supports my view that the management of RLS is not simply biomedical treatment.
I sympathise with the sentiment of what you write.
I suspect however that it may not be quite like that. In the GP core curriculum there are some principles of practice which are then applied specifically.
So the above principles should be applied to any complex long term conditions, e.g. diabetes, MS, osteoarthritis etc.
So if a particular GP has a patient with RLS, then you can not expect them to be knowledgeable about RLS. BUT, you would expect them to acknowledge that and hence "inform themselves sufficiently".
It's not as If they haven't been educated to do that, they have. So if that's not what happens then why doesn't it happen?
Is this going to be entirely a matter of simple ignorance?
Interestingly what the RCGP also imply, in what they wrote, is that if a GP wishes to have some guidance on the management of RLS then they can go to this website
Fascinating really that the RCGP should think that GPs should learn from a webpage provided for patients and seem unaware of the NICE series, in particular
I can say from my situation here in Australia and over 28 years with severe RSL I have had GP's look at me like I'm from Mars (or is it Venus?).
I took me years to find a doctor who specialises in sleep to understand my RSL...what helped is that the doctor has RLS too and has been on this journey with me and I am much better - but in sayiing that last night I can only describe the RL pain in arms and legs as violent 😥so I'm not 100%.
Hi, I have been searching for a dr that understands rls, so far no luck.Are you in Melbourne? If so are able to pm me the drs name….I’m desperate for help. Thanks
I desperately need to find a doctor in Melbourne too.My Neurologist is very clinical and uncaring.He just tells me “It’s hard to treat!”..We know that already!!!!
Just keeps prescribing dopamine agonists (sifrol) and gabapenton .
He won’t prescribe any codeine to help me wean off sifrol.
Prescribed Meletonin to help me sleep which I know makes the condition worse!
My symptoms start around 3am and last all day. My only relief is at 8pm, two hours after I take my .250 mg sifrol.
Some days I feel so exhausted I worry I might collapse.
It’s difficult enough living with COVID lockdowns but constant restless leg syndrome as well is really making me feel depressed.
I can’t even take any antidepressants as they make the condition worse.
I can't help you with the doctor, but your main problem is the Sifrol. I'm afraid there's no easy way of getting off this. The least severe way, but the longest. is to reduce it in small steps. The smaller the better.
You could try reducing in steps of half a 0.125mg tablet every two weeks. No more often.
As the dose gets lower, after withdrawals settle, your augmentation should decrease.
This is really the ONLY way forward. A good doctor will tell you that.
If you're taking gabapentin at the same time, it won't work while you're suffering augmentation or help much with withdrawals. Keep taking it though, it may start working as the augmentation decreases.
It would be good if you can get codeine prescribed, but if not then over the counter paracetamol and codeine may help a little.
If you can get a prescription a "Z" drug or a benzodiazepine may help with sleep.
It is very IMPORTANT that you get your iron levels checked and start iron therapy appropriately.
The blood tests should be for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.
If the tests are "normal" and particularly your TSAT less than 45%, then if your ferritin is less than 75 start taking an oral iron supplement.
Thos is often neglected by doctors (and RLS sufferers) but iron deficiency is the main cause of RLS.
There may be things exacerbating your RLS. As you know antidepressants can make it worse but there are other drugs too. Diet is a factor in RLS too.
Depression is and insomnia are major problems.
Hopefully as your augmentation settles your depression may lessen. If it doesn't then if it's severe, buproprion is a good antidepressant for RLS.
If there are coping strategies you have for dealing with depression utilise those, otherwise look up some self help behavioural measures. If depression persists after withfrawing from sufrol, get some professional help, e.g. some form of CBT.
Athough not entirely successful, look up "sleep hygiene" measures and use that. it will make some difference which you mght not notice at first.
At some time it may be worth checking that you don't have some sleep disorder. people with RLS often have sleep apnoea as well. If you have a sleep partner then ask if they observe you snoring a lot and especially if you stop breathing. That is, when you do sleep.
If you had sleep problems before you had RLS, you may have primary chronic insomnia. This is something I have suffered from off and on, since childhood.
It would be good if you attend to all these things, but your main task is to get off the sifrol. above all else it's the sifrol that is causing your current situation.
I recently weaned myself off 800mg Gabapentin very slowly over 6 weeks without any side effects so don’t want to start taking it again.Unfortunately Paracetamol and Codeine are no longer available over the counter in Australia so I will keep trying to find a sympathetic doctor.What dosage do you think I will need to help withdrawal symptoms from sifrol?
My recent iron study results were Ferriton...153
Iron...20 and Transferrin....2.6
10mg Temazepam helps me get about 4-5 hours sleep but I only take it once a week as I don’t want to get addicted to this too!
I do not have sleep apnoea as I had a sleep study about 2 years ago.
I will also try to get the antidepressant you mentioned as it could really help me sleep which would be wonderful!
Thank you so much for reaching out to help me and my fellow RLS sufferers...you give us hope that there is light at the end of the tunnel!
If you weaned off gabapentin and you're now weaning off sifrol then you will be taking no RLS medications at all.
What was your reason for stopping gabapentin?
Your ferritin sounds OK, but be aware that if you have any inflammationn this may be artificially raised.
If a doctor wil prescribe codeine phosphate that would help, The dose is up to the doctor. It's a good idea to start at the lowesrt dose and increase only if necessary.
I came off Gabapentin because neurologist said “If 800mg isn’t helping then a higher dose probably wouldn’t be effective”!Do you think I should resume taking it again before I start weaning off sifrol?Current blood tests indicate no inflammation.
CRP...1. ESR....2
I was hoping when I stop sifrol my symptoms won’t be as distressing .Maybe I am being unrealistic-would like to know your thoughts..
At present I have symptoms through my whole body.
I take magnesium,iron,folic acid,vitB,curcumin and Lipoic acid .
Vitamjn D is known to help if you have a deficiency of it. Vitamin B12 is also.
Ooops, 900mg gabapentin is considered to be the minimum effective dose. Some say between 1200 and 1800mg. The maximum recommended is 2700mg.
The starting dose is 300mg and you then raise the dose in steps of 300mg, until it works. So if you got to 800mg and it wasn't working, then keep raising it.
Another option for people who find they need mote than 1200mg is to switch to pregabalin as this is better absorbed whilst gabapentin isn't at higher doses.
Unfortunately, gabapentin doesn't work very well of you're suffering augmentation, which you obviously are.
You will find that as you reduce the Sifrol you should find that the augmebtation faded, e.g. all over body symptoms recede.
As haven't had a proper trial with gabapentin I'd suggest you re-start the gabapentin at least 4 weeks before you finally stop taking sifrol. It can take that long to start working. You can start it earlier, it's OK to take both together.
This is recommended in the paper to which I give a link to elow.
I suggest you take at least 900mg. If all goes well once you've witgdrawn from sifrol, you could try reducing it a bit. However if 900mg isn't working then try raising it.
Of course you'll have to discuss this with a doctor.
Here's a link to some evidence to support what I suggest.
He sounds like my gp, unsure how to treat rls. He should at least give you the codeine, I have that which is sometimes the last resort to settle things.I will pm you
Thank you for responding.. I will keep trying to get codeine so I can start my long journey of weaning off horrible sifrol.Did Aussierestlesslegs pm u name of doctor in Melbourne?
I sometimes write "RLS sufferers", or "people with RLS". I once wrote "RLS-ers". Another variation could be "people who have RLS"
What you call yourself I believe is quite important and can influence how you think about yourself, affecting your self esteem.
I know some people with particular conditions have a name for themselves which is more positive. I believe people with Aspergers call themselves "Aspies". I used to think of getting a tee shirt saying, "I'm an Aspie: keep your distance". The pandemic made that unnecessary.
Calling yourself a person "with" or " having" RLS suggest that you're not just a person but you have something extra like an alien presence, a disease, nasty!
Calling yourself a "sufferer" makes it automatic that should be suffering.
I'd be interested for somebody to come up with an "affectionate" and "self rewarding" name for us. I'd get a tee shirt saying "I'm a ( fill in the blank) and I'm proud of it.
This might be flippantly written, but I believe I am making a good point.
I don’t think most people would have made it to this forum if they weren’t suffering in some way. Loss of sleep, discomfort and disruption are not pleasant as far as I can see. Personally I have a positive outlook on the rest of my life and the many things I can do and I’m thankful the RLS isn’t worse, but I’m not sure I want to identify myself by my RLS or cultivate a positive attitude. However there’s a meditation saying that what you resist persists, so I don’t fight it either and try to accept it and find the best way to minimise impact on my life. So … maybe sufferer sounds a bit passive and like it’s taken over your life and there could be better terms but I suspect for some people it is pretty accurate.
I don't think my GP read the manual. I was told I was being over analytical and trying to be a doctor/nurse when I tried to have a decent conversation with my GP. That may be the way GPs are trained these days but certainly not in the past.
Thanks. I was offended. Maybe as LotteM says this approach wasn't in the curriculum back in the day when he was being trained. He's just coming up to retirement.
This doesn't excuse your doctors conduct. Even if they weren't trained in a holistic approach, they have been supposedly trained in good patient communication for at least two decades to my knowledge.
In addition training or no training no doctor has the right to be disrespectful.
I assume this is in the current curriculum. But most gps will have been trained 5-10-20+ years ago. I wouldn't be surprised if these aspects were NOT in the curriculum at that time. There has been quite a change, not only in pure medical knowledge but particularly, and more recently, in attitude towards patients.
I feel bad having a go at GPs, who I realise are under a lot of pressure nowadays, but there are some blood-curdling accounts of RLS treatment and criminal exacerbation of existing suffering out there so here goes: I presume practicing GPs are required to engage in CPD (continuing professional development) in common with almost all professions nowadays so I'm not sure that being in practice for a long period of time is a sufficient justification for not following these rather basic guidelines. Even if you could get off the floor-level justification that this is fundamental common sense.
Having read other comments from people who know more about GP training than myself, some aspects of current GP training go back further than I'd imagined e.g. treating the person, not just the condition.
So if you're not getting that, then you can't excuse it as a lack of training.
There may be others reasons, but if so then it would be good if the doctor explained this.
If it isn't made obvious why a doctor is apparently behaving in what you'd like from them then I can understand anyone having a go at them.
Similarly, it seems to be a doctors perception of a patient being dissatisfied is that the patient isn't given them the treatment they want. According to the BMJ this is the perception of some doctors
bmj.com/content/328/7442/72...
This view could be seen as "patient bashing" .
There are other reasons for people being dissatisfied with a particular doctor.
A radical suggestion, perhaps patients should treat their doctor as a person and not just a prescriber of medicines.
There may be good reasons for having a go at some specific doctors. It may not be helpful to have a go at ALL doctors, but that's no reason for challenging a doctor when it's justifiable.
I am at the moment pursuing compalints against three doctors for misconduct. One of them has recognised her errors, has apologised for them and submitted herself to investigation. The other two have been reported to the General Medical Council.
You are quite right, this may not have been in previous curricula.
It would be interesting to see how recent the new curriculum is.
I see my neromovemt specialist in November 6. The Brain and Neurological St Michaels Group hired I floored him with an hour last time. He is limiting me to 1/2 hour this time. I will let you know. I t is still some time off,
My impression from being a part of this forum is that in general doctors in the UK are substantially less well-informed about and less sympathetic to RLS than doctors in the two locations with which I am familiar, rural Iowa and New Zealand. My visits to GPs and neurologists in very small towns in economically-depressed southeast Iowa were immediately helpful and satisfactory. They knew all about the condition and latest treatment modalities as soon as I mentioned it. Then after years of very helpful treatment there, I returned to New Zealand 20 months ago, and found the same thing.
I applaud all your efforts to raise awareness amongst the medical profession in the UK and wish you Godspeed. Or, to put it in language more representative of the irreverent culture of the two locations I have mentioned, “You kick them quack asses“.
I am very pleased to hear that you've had such good experiences in both locations.
Unfortunately, kicking quack asses isn't the only thing that needs to be done.
Doctors in the UK are largely ignorant about RLS because it's not included in pre-registration medical education and also not in GP education.
I can appreciate the reasons for this. Both curricula are absolutely packed and hence less prevalent or lower priority conditions may not be covered.
I find it reassuring that the core curricum inludes some general core strategies for managing any chronic condition the GP comes across. It also appears that GPs are duty bound to inform themselves about condutions there not familiar with. That is, if ignorant about RLS, they should admit that and do something about it.
However, if you read through comments about GPs in this forum, it appears, (at least for forum members) this often doesn't happen.
You could say that older GPs didn't have the same training, but this is no excuse for the conduct of some doctors. The worst scenario is where they apparently fail to regard their patients as real people.
This, I believe, to some extent a cultural issue. Medical education can be quite brutal and there is a "survival culyure", an expectation that a "good" doctor can survive brutality. This doesn't promote compassion and care.
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