I have suffered with restless legs for many years but didn’t know it was a condition until about a year or so ago then the Gp handed me a prescription for Ropinarole which at first worked but then needed increase dose.
anyway I weened off them but my legs are still restless and I take magnesium glycinate along with magnesium lotion.
I have not so good nights and awful nights and affects my sleep and I’m a carer for my son so I don’t work but I don’t think I’d cope working with no sleep.
has anyone found an alternative way to help your legs?
I’m due at the Gp next week and I’m going to talk about helping my legs as it’s really getting me down and I weened if sertraline that they gave me too but I felt they made them worse.
I try to walk daily but don’t know if it’s helping or making it worse.
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Suzi88
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Dopamine agonists such as pramipexole, ropinirole and rotigotine are no longer recommended by experts for first line treatment of RLS precisely because they lead to augmentation. Unfortunately a lot of GPs are still unaware of this:
Which country are you in? You haven't completed your profile and this can be important in advising on availability of resources etc.
There are other better medications for RLS, but before getting into these, get your iron levels checked. Magnesium helps some of us, including me, but your doctor's first step should be to give you a fasting full panel iron test to include serum ferritin and transferrin saturation. This should be given in the morning, after fasting overnight, no heavy meal the night before, no iron supplements or multivitamins containing iron for at least 48 hours prior. Make sure that you get the actual numbers, not just a 'normal' comment: most doctors know little about RLS and don't know that we typically need higher levels. Post the numbers back here for advice on iron supplementation/infusion. Improving iron levels helps the majority of RLS sufferers.
Hi, my first post about my severe, chronic, resistant RLS. I've had a low blood count for years but with normal indices such as B12, folate, ferritin,.
It wasn't until I had a ferritin saturation test (14 compared with average of 25) that my low iron stores were picked up and I had a single iron infusion 3 weeks ago.
Trying to encourage my GP to repeat the test in a week or so, and if low, then to refer me for a 2nd infusion.
My psychiatrist is hopeless re RLS. She has made no effort to research possible treatments and says I need to see a neurologist. Long waiting list on the NHS. Her predecessor was fine though Ropinirole, then Pramipexole gave me augmentation, so weaned myself off.
In desperation I've booked to see a private neurologist, with a particular interest in RLS.
You don't want to rush too much for another test because if done too quickly you can get an inflated ferritin number (and then turned down for another infusion).
I can't quickly find a definitive rule on this - NICE does appear to suggest re-testing after 2-4 weeks, although that's usually for haemoglobin; the Mayo Algorithm says "clinical response to treatment is rarely immediate and may be delayed for 4 to 6 weeks or longer".
One of our most prolific and reliable advisors on here, SueJohnson , posted: "Have your ferritin and other iron indices checked 8 weeks after the infusion and not any sooner since they won't be accurate".
Welcome to the forum. You will find lots of help, support and understanding here.
Ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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). As Chris said 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 at Https://mayoclinicproceedings.org/a...
You indicate depression on your profile. Most antidepressants make RLS worse. The onlt safe ones are Wellbutrin and trazodone.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
UK GPs and specialists alike aren't taught about RLS, and NICE/NHS guidelines are largely out of date. There are a few neurologists who know more: who are you seeing?As you've realised, you don't want to be put back on a dopamine agonist - pramipexole, ropinirole or rotigotine. If your neurologist suggests this they may be 'interested' in RLS but they are not knowledgeable.
Here's hoping that they know about augmentation and ICDs on DAs, about prescribing gabapentin/pregabalin for RLS (and don't just refer to NICE guidance which doesn't understand titration for RLS), and about low dose opioids.
If you haven't already done so, read the Mayo Algorithm and make notes before your appointment:
Hi Suzi, Congratulations on weaning off Ropinerole. Getting off DA's is the best first step anyone can take. Magnesium can and does help a small number of people even though the clinical data suggests that it doesn't. I've never had any benefit myself from it but do take it for cramps.
Can I suggest that you complete your bio with the country you live in and all/any other medications you are on, including OTC ones that you take. It will help people with their replies. I'm in Australia, which with Britain is well behind the US in it's research and knowledge. However, the people on the forum are full of knowledge and information and will be able to help you. Sue will no doubt reply with a wonderful and in depth message to get you started.
In terms of exercise; too little and too much will aggravate your RLS. However, it will be up to you and trial and error to work out how much, and what kind of exercise makes your legs worse. Another aspect of getting to understand RLS for YOU is to work out if your legs are triggered by any food or drinks. Many find alcohol aggravates their legs, others coffee, sugar, sweeteners and salt to name a few. I don't drink but find sugar a huge trigger, as well as cheese and high glutamate foods. You can find lots of posts about food and drink triggers and it will help to read widely and learn from others who suffer from the syndrome, Educating yourself is your best defence, then finding a good doctor. If you can educate your own doctor, that's great. I was able to do that and he's brilliant. Some doctors refuse to learn though. Depending where you are, there are some excellent doctors that we can point you in the direction of.
Hang on there for the answers from the most knowledgeable in the team, Joolsg, Sue, Madlegs, Chris Columbus and others and they will put you on the right track.
A lot of prescription and over the counter meds make RLS worse, including as you've discovered sertraline. This list of Medications To Avoid is extracted from rls-uk.org/ where you'll find a lot of useful information and I'd encourage you to join either that or - if you're in the US - rls.org/
"A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.
In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.
Cold and Flu remedies and Anti-Histamines:
Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed.
Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.
Anti-depressants:
Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.
Anti-psychotics: Most anti psychotics worsen RLS.
Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):
Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.
Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide, will trigger RLS during and after surgery. Safe alternatives include odansetron (Zofran), domperidone or granisetron hydrochloride."
As restlessstoz writes, there can also be various dietary triggers, but these can take time to work out: some people don't seem to have any dietary triggers, others have a lot! Too much sugar particularly later in the day, is fairly common; too much caffeine, particularly again later in the day, can be a trigger - but conversely it also helps some; msg is a factor mentioned by some; I and some others find artificial sweeteners, particularly in my case aspartame, a major trigger. It's very variable: some people have tried various strict diets to no effect.
But look at your iron levels and at any other possible medication triggers first. And do come back here for more advice from experts on here like Joolsg, SueJohnson, Madlegs1, LotteM etc who have all experienced what you have and found ways to get better.
I am on 1mg of ropinirole for some time. Worked at first but not now. Have to take it earlier in the evening. Last time I spoke with GP I told her it didn't work and she told me to stop taking it, without offering me an alternative. I still take it until I can find something that works without me education. Don't think people realise what a horrible thing it is.
But first, get blood tests to ensure serum ferritin is above 100ųg, preferably 200ųg.
You will need to start pregabalin or gabapentin about 4 weeks before the last dose. Read my reply to Suzi88 and refer your GP to the RLS-UK website, especially the useful resources which sets out how to withdraw from dopamine agonists.
There are many videos on YouTube that show the horrors. I suspect she was following Johns Hopkins protocol. They suggest a 3 week withdrawal on the basis it will be brutal whichever way you do it. I would only suggest a fast withdrawal to someone who is under 55, and otherwise fit and healthy.
Yes, yes, yes the sertraline will make RLS worse.It's basic RLS teaching knowledge.
All anti depressants make RLS worse.
Sadly, RLS isn't taught in the UK at medical school, or during GP or neurological training.
Dopamine agonists , like Ropinirole, are no longer prescribed by experts because they all cause drug-induced worsening.
Many medications also trigger/worsen RLS.
So, show your GP the RLS-UK website.
In useful resources, there are printable helpsheets and a list of medications that worsen RLS. Anti depressants, sedating anti histamines, statins, beta blockers and gastric PPIs all worsen RLS.
The first step in treating RLS is to take full iron panel, morning, fasting blood tests and raise serum ferritin above 100ųg/L, preferably 200ųg/L. Raising serum ferritin can resolve the majority of RLS cases and should be tried before medications.
If raising serum ferritin above these levels doesn't improve RLS, then first line meds are pregabalin or gabapentin. If they don't work, then low dose, long half life opioids are very effective for refractory ( difficult to treat) RLS.
I attach the link to RLS-UK. The dosage and timings are set out.
Suggest to your GP that they learn about the disease by reading the website.
Suzi I had RLS extremely bad for 15 years as bad as it can get. It attacked my body every eight seconds. I have used an over the counter all natural medication now for two months and RLS is gone. It’s called Seratame by pure biogenetic out of Carlsbad California. I take two pills with of Seratame 1 b6 tablet and magnesium citrate. It took me 15 days to start working , and like I said 2months in and it is gone.
FYI - the article on the Seratame website is very good, with references to significant studies. That said, you can mirror the ingredients with separate supplements. The probiotic LP299v is a key ingredient and you can purchase it from Jarrow (Ideal Bowel Support, 10 billion CFU, compared to 1b in Seratame). The B6 should probably be the reduced form of B6 (P-5-P). seratame.com/seratame/
To add to what others have said (and repeat some of them).
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. You can have a heavy meal the night before, just not a heavy meat meal.
Ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
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