My doctor doesn't recognise PLMS but does recognise RLS however she cannot prescribe medications for either condition as a prescription can only be done by a specialist in neurology. We dont have any private overnight sleep clinics in the North of the UK (theres an odd one or 2 clinics in London). The waiting list to go to an NHS overnight sleep clinic is extremely long and all they seem to want to do is check for sleep apnea. Has anyone on here had a successful diagnosis of PLMS from a UK general practitioner and if so have you got any tips on the best way for me to approach my GP?
Thanks
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Speedbuggy
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RLS and PLMD are not taught in the UK, but what your GP is saying is totally incorrect and the opposite of what the RCGPs have advised RLS UK members when we campaigned to get it taught in 2021. The RCGPs said that all GPs would follow NHS and NICE guidance.
Seems like your GP is even further behind with her knowledge than most.
Take this opportunity to educate her and ask her to read the NHS,NICE guidance and the most up to date international treatment. NHS and NICE guidance are both outdated but both refer to treatment with iron and pregabalin and opioids.
GPs can prescribe iron and pregabalin for RLS and PLMD and in most areas they can also prescribe low dose opioids.
Just ask her to do her job properly and if you have problems, complain to the RCGPs and the local PALS.
Do NOT let her prescribe dopamine agonists like Ropinirole, Pramipexole or Rotigitone as they cause severe worsening of RLS for most.
Here are the links. Ask your GP to read them. NICE puts pregabalin as first line treatment alongside dopamine agonists, and NHS puts dopamine agonists as first line treatment. The Mayo algorithm, written by the world's top experts, relegates DAs because of the high rates of drug-induced worsening (augmentation)..
So, ask your GP to follow UK guidance and carry out full panel, fasting, morning blood tests, review and replace trigger meds and if that fails, prescribe pregabalin as per RLS-UK website dosing.
Looking at your bio, you are on so many medications that actually cause or worsen PLMD. Both NHS and NICE suggest reviewing & replacing these meds.
What meds are you currently taking?
Amitryptiline, PPI gastric meds and statins are all trigger meds.
My gp was trying to prescribe ropinorole, this is what she wrote in my notes: ?unable to trial meds for ropinorole as saying its specialist initiated
refer to sleep clinic
She has referred me back to the sleep clinic (I've already had a home study = mild osa) but because the gp doesn't explain things correctly to the sleep clinic they just keep testing for that and nothing else is checked. I need a polysomography test done but I just don't seem to be able to get this test done in West Yorkshire
I videoed myself and I move 400+ times a night which is why I'm fatigued the next day. I just can't get the doctors to listen. I'm so frustrated with them
Hi Speedbuggy. Just a personal note here. I found I was getting nowhere with my GP, and now I am much further down the line. I looked up the local Consultant specialist, and saw he (assumed - apols) had a private clinic. I paid £300.00 privately for basically an hour. It was money well spent, i'm now back on the NHS per his instruction. I imagine my GP wasn't happy with me jumping over him but it was money well spent. Look for the neuro consultant for your local hospital, theres usually a team there. He may also operate under Nuffield. I do accept that some can't afford it, but I do get the impression GP's are slowing down the onward referrals, so NHS figures appear better.
Dr Jose Thomas at the Gwent Sleep Clinic in Gwent is one of the few knowledgeable UK doctors. He treats Sleep apnoea first and says it resolves the majority of RLS and PLMD. If you can afford to pay for a private sleep clinic, then do so. It's outrageous that we have to consider paying privately for health care , but for this disease, we often have to because so few doctors know anything about it.
I'm actually really pleased that in your health authority, the doctors cannot prescribe dopamine agonists without specialist consultation. It will stop thousands suffering unnecessarily with severe drug-induced worsening.
I understand about the heart, high blood pressure and acid reflux.First get your PLMD under control. Once it's controlled and you're sleeping properly, other health conditions improve. Several people find their blood pressure reduces significantly once they're sleeping well. Tell your GP that if she controls your PLMD properly, your other health problems will improve.
Amitriptyline is a no no for RLS/PLMD so replace that first by taking a safe anti depressant like Bupropion or trazodone.
Statins & the other meds can be reviewed once you've controlled the PLMD
1. Demand full panel fasting, morning bloods to include serum ferritin. Raise serum ferritin above 100, preferably 20p via pills/iv iron infusions. If GP refuses to refer for iron infusion if pills don't work within 3 months, send results to the Iron Clinic in Harley Street. They'll do an infusion for around £800.
2. Review all trigger meds and see if you can safely replace. Amitriptyline should be the first. Statins possibly once PLMD is controlled. Try Symprove for your acid reflux.
3. If 1 & 2 don't resolve PLMD, start pregabalin or gabapentin as per RLS-UK website dosing schedule.
4. If 3 doesn't work after 3 months, switch.to a long half, low dose opioid like Buprenorphine or methadone.
Read, read, read and research.
Start with the Mayo Clinic Algorithm. And RLS-UK website.
Your GP will know zero as she will never have studied RLS.
So, learn and print off the info and ask her to read.
There is nothing in local NHS areas that states RLS/PLMD cannot be treated by a GP. The waiting lists for sleep clinics and neurologists makes it even more ridiculous to expect you to wait to be treated properly.
If your GP refuses blood tests or to read the info, change surgery and complain to the RCGPs.
You have already had the best of advice from this site but i thought i would add my experience for your help.
My GP knew very little about RLS but compared to yours he is an expert! When I went to him from a different surgery which had prescribed dopamine agonists (DAs) which resulted in augmentation (which was severe and made normal life impossible) I was faced with trying to battle my way around the NICE/NHS guidelines. It took visits to consultants (neurologist and cardiologist) to get through to where i am now. i currently have low dose opioids and pregabalin prescribed on NHS. I have been allowed on a trial basis by the cardiologist to stop Atorvastatin and have myself stopped Omeprazole.
Good luck with the needed education programme and your progress
I went through a couple of years of different DAs (eg ropinirole, and rotigotine) before I augmented on 4mg rotigotine patches mid 2023. Since then I have tried pregabalin and oxycodone (slow release) before finally in early December I started on Buprenorphine patches with some success. However"control" of patches is difficult because you cannot reliably tell when they run out and so I have, only last week changed to Buprenorphine tablets. i am trying to reduce/stop pregabalin as these tablets even as low at 150mg/day cause me balance issues.
Not a problem for you to ask. I went to see a neurologist privately because augmentation was ruining my life and NHS waiting list was very long. The neurologist initially prescribed pregabalin at an increased dose but that did not stop my RLS and left me at risk of falling because of balance side effect. The neurologist then recommended low dose opioid and the GP prescribed them on NHS.
i hope this clarifies the matter for you but please come back to me if you need further detail or support because that is what the forum is for.
PLMS is treated the same way as RLS. For your polysomography test, you will probably have to travel to get it.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) as Joolsg said. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. If your doctor won't do it ask for a referral to a neurologist. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Hi SueMy Ferritin was 65 ng/ml but in the UK its classed as ok if its between 12 and 233 or 0 to 296 depending on which laboratory the nhs uses. I told the doctor it should be over 100 and I'm awaiting her response
If you take blood thinners like Clopidogrel which you are taking, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after although the ones you are taking besides the gaviscon shouldn't be taken at all. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Some further comments about your medicines:
Bisoprolol which treats high blood increases PLMS symptoms.
Clopidogrel, a blood thinner, may or may not make RLS worse.
Losartan which treats high blood pressure by blocking a substance in the body that causes blood vessels to tighten can worsen RLS although there are other reports that it doesn't.
If you end up taking gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL
Metoclopramide is a dopamine antagonist which blocks the dopamine receptors in the brain and makes RLS worse. It is on the RLS.org Medical Alert Card.
Than you Sue. I can't change my medications but I will tell the doctor all what you've said. She is ringing me on 1st March. I'm not taking Metoclopramide at the min but all the others I still take. Its a lot to take in with all the times before and after meds. I'm also on gabapentin at 300mg a day so I think the doctor will increase that on the 1st as well so that should help...
On to your medicines: Anything I say RLS, for applies equally to PLMD.
Statins make PLMD worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and you list this on your profile and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Omeprazole , lansoprazole and ranitidine are all PPIs. RLS-UK says most PPIs will make RLS worse and several people on the forum have said it made their RLS worse. A safe antacid is Gaviscon Extra Strength Tablets and Liquids which you are apparently already taking. You don't need all of them.
Famotidine is another antacid that makes RLS worse.
Bisoprolol treats high blood pressure. Some medicines that are safe for high blood pressure are propranolol (Inderal which you list on your profile, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which can actually help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Clopidogrel is a blood thinner which according to effindoe an expert who used to be on this site is known to make RLS worse. There a two safe substitutes that can actually help RLS. One is clonidine and the other is s dipyridamole. You might want to discuss this with your doctor. Dipyridamole has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Ticagrelor is also a blood thinner. I don't know whether it is safe for RLS and PLMD. I would need to do more research.
Thank you Sue. I will need to have a good read of the medicines I take and discuss with my gp to see if they will/can change some of them to try and help while I wait for a NHS sleep clinic appointment (could be 12 months or more) there is nowhere private in the UK sadly other than a couple of places in London and they seem only interested in sleep apnea.
I will also mention the drug ropinirole is not a good drug and suggest gabapentin or pregabalin instead
My GP asked me to speak with a neurologist I am currently under for something else to see if he will allow my gp to do a prescription for me. He is ringing me in a week or 2
I've not had a ferritin test done (no tests actually) as I've said before my GP has never heard of PLMD
Hi, Jools and Sue have given you excellent advice.
One thing i will note is that in some cases, people can take some of the non-recommended medications without it triggering their RLS / PLMD. For example, i have PLMD (with mild RLS) and i didn't find that esomaprezole (a PPI) exacerbated my symptoms. In an ideal scenario, you'd try one medication at a time and see how you go with it but i realise that's not always possible. And the impact on medications / diet etc on PLMD isn't as easy to establish as impact on RLS (because PLMs typically happen when asleep).
I'm in Norfolk UK and after weaning myself off of Ropinerole I insisted on Gabapentin. My plm ceased as soon as I started the Gabapentin. You may have a fight on your hands but do insist. Write to the head clinician of your practice explaining your problem and don't give up!
My legs started to feel tense and sort of nervous and would drastically spoil my sleep and also spoil times when I had to sit still ie Theatre or eating a meal out. I would also ‘kick out’ at night when asleep…. When I eventually got to sleep !!!
My top front of my legs would also seem to get cold. I could almost draw a line around the area affected.
I eventually found out the I had RLS and also the kicking in bed was Involuntary Leg Movements (ILM). My wife would be black and blue !!!!!!
Good news is that I knew what I had but how could I stop this….
I started a contract in Kuwait and the food I ate was mainly all processed and without knowing I was consuming more salt than I should..
My RLS was very, very bad and my sleep was affecting my work and my mental health.. well… I just felt tired and not ‘sharp’ in work. I was getting desperate….
I googled RLS and came across someone in the States saying they had the solution and for $19.99 I received an e book with ‘The fix’.
It only really needed to be an e mail back because across the second page in massive letters was the word SALT and the message was Reduce or Cut out totally.
The book advised to go ‘cold turkey’ with no salt for five days so I ate eggs and chicken breast cooked without salt… WOW I felt alive and active and slept better than I had for ages. I never thought that salt would make so much difference to me.
I would advise this cold turkey method as it will show you how drastic it is and you should feel better. The taste buds in your mouth will also start to ‘come alive’ as salt is actually harming them.. I think.
Apparently, although we have a daily intact amount of salt we never should add salt only get the salt from natural means. Some food has salt naturally. Salt was introduced into our diet due to the fact it preserved meats etc…..so it’s a man made introduction.
So I now to try to prevent RLS
1.Stay away (or try) salt in foods or eat foods with reduced salt
2.Reduce my caffeine intake … never after 16.00 (this includes tea also)
3.Reduce Chocolate and never (if I can help it) in the afternoon
If I have not been so careful or could not help it and start to get RLS I
1.Heat a bean bag in the microwave to quite hot and place it on my legs or in between my legs. It’s got to be hot enough that you certainly know that you’ve had heat there.
2.I use my fists (knuckles) to bang on my legs in the area that I have found to be cold and its strange, but I can feel when I hit the spot, so I am quite hard on the area and that seems to move the circulation of …. I don’t know.. Blood or nerves but it seems to free up the anxiety in my legs.
3.Sometimes if away from home and the hot bean bag, I run a hot shower and concentrate the hot jets on my legs.
Now. The above is what I think, experienced and what I am doing. It works for me and now I know I feel I am in control but not fully as sometimes I’ll eat something with salt in which I can not help but then I will probably end up using the ‘hitting’ method of relief.
Thanks for that. I do eat chocolate so I could try stopping that. I don't have salt or cafine. I'm so glad you found things to help your RLS Happy new year
I was referred to a sleep clinic, they were very negative because of back log, and I didn’t really fancy going there anyway because of lockdown, but a year later one of the consultants gave me a call, surprisingly. He was quite the jerk and unknowledgeable but said ‘well the least we can do is offer an in home test’. I had to go and pick it up which stressed me to no end and prevented me from sleeping the following night during the recording, and the doctors read it all wrong, as though I’d been asleep all night through. It was a joke. BUT they did say there was evidence of RLS and PLMD and so it was of some help. See if you could request an in home test, it’s called NOX. I then went back to my GP of 13 years and explained I was being poorly treated and said I have a right to treatment just like everyone else, and he agreed to try me on Buprenorphine.
Yes, they did, and i think it was for SA to begin with, but covid put a twist on everything. Either way, the sleep clinic was extremely unconvincing. I have gotten help but I have lots of issues with the remedy so not sure where to go from here. Hope you’ll find help!
My gp in the UK has finally put me on Gabapentin however I was reading the updated algorithm on restless leg mayo clinic and noticed it says we should be taking Gabapentin Enacarbil which is a slow release and therefore different to Gabapentin. Does anyone know anything about this? And can it be prescribed in the UK?
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