Anybody have any advice, guidance at all on restless legs and how to cope with this condition
Restless legs syndrome: Anybody have... - Restless Legs Syn...
Restless legs syndrome
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Beekeeper24
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That is a very general question. All posts and replies deals with this. Hence I suggest you do some good reading through the various posts. Also, rls-uk.org (UK) and rls.org (USA) are great sources.
If you have a more specific question, we will share our experiences and knowledge.
Welcome to the forum.
Unfortunately very few UK doctors or neurologists know anything much about RLS: they aren't taught it, and they rely on outdated info from NICE/NHS.
Forget quinine: if a doctor is still recommending that - run away!
Having augmented on pramipexole the last thing to have been moved to is ropinirole (just another Dopamine Agonist - DA - which are no longer first line treatments for RLS used by experts). And neither pregabalin nor gabapentin will be effective until you've been fully off DAs for several weeks, having weaned off very slowly.
Exactly as Lotte says: start by reading up on RLS-UK, including Augmentation, Medications to Avoid, Non-Medical and Medical Treatments etc etc and then come back with questions:
My doctor if I tried tablets they would not help much, so I never tried them and just have to put up with my legs not staying still.
RLS can be tackled successfully by non-medical and medical treatments: I now very rarely have RLS symptoms after years of suffering.
Check out these RLS-UK pages (if you haven't already done so):
rls-uk.org/non-medical-trea...
Thank you, I shall read through these and I'm really happy that you've found relief, it's nice to know your ok now.It's been a long, painful journey and now with all this wonderful information, I can't tell you how received I am that it can improve. I just thought this hell would be life.
The other thing I would like guidance on if possible is being on citalopram. Without antidepressants for moderate to quite severe depression and aweful anxiety (some days) I get irritable and low patience levels, I don't know how to live without antidepressants. Some triggers I can't remove myself it's not an option ie living circumstances . I do believe when some of these triggers are removed I will find more peace. Until that changes my anxiety isn't good
Have mentioned this book before on this forum & have had great positive responses from those who have read it so please try 'Navigating Life with Restless Legs Syndrome' as it really is so informative & an easy read-Good Luck !
That's brilliant thank you, il go onto amazon
As you'll see in the RLS-UKvmedications to avoid section, most antidepressants - including citalopram - exacerbate RLS for most. Trazodone and Bupropion are both generally considered RLS safe alternatives, but can be difficult to get prescribed here.
Thankyou I read all the pages, I have an under active thyroid and take levothyroxine, I also take statins. So it looks like I can not do much about it. I do not want more drugs.
Statins make RLS 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, however don't take it if you have diabetes and then there is Triglide which seems safe. Berberine may help if it is mildly elevated. 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.
Sure you can do something if you don't want to suffer.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). Conditions associated with hypothyroidism (high TSH) can make RLS worse so definitely want to bring it up.
You don't want to take DAs as DAs like pramipexole and ropinirole inhibit TSH secretion so brings down thyroid hormones.
However you can take gabapentin or pregabalin. ask your doctor to prescribe gabapentin or pregabalin. 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 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, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Your bio mentions Ropinirole and meds for depression.If you list ALL current meds and doses and your full iron panel blood test results, we can guide you.
Most people come on here because they're on Ropinirole or Pramipexole and trigger meds, like anti depressants.
As a result, they have severe, uncontrolled RLS.
And look at RLS-UK website.
UK doctors aren't taught anything about RLS or the dangers of dopamine agonists, so we have to do our own research.
Hi, I currently take ropinarol 2mg each evening, ferrous sulphate200mg each morning, citalopram 40mg each morning, codeine phosphate 30mg when required. I can't remember off hand what my ferritin levels were and iron but the results did show as low, below what they should be.Id need to find the letter. I'm supposed to see the neurologist consultant again in about 2months time.
I just feel so lost, the Dr's don't seem to know what to do or care to much and the consultant said it's pretty much trial and error. So iv been reading self help books etc and specifically books about this condition. Being in a car can be hell, having to get out on the journey to walk about, flying is horrendous and so is things like cinemas and theatres. It can be absolutely torture.
Who is the consultant?The top US expert, Dr Buchfuhrer, says that 95 -98% of patients can be symptom free with the RIGHT doctor using the RIGHT tools.
You have the WRONG doctor using the WRONG tools.
So first, change neurologist.
Your neurologist should have told you that Citalopram triggers/worsens RLS. He should have worked with you to safely replace it with trazodone or wellbutrin.
Professor Guy Leschziner at Guys hospital has written the section in NICE guidance on replacing trigger meds. He refers his RLS patients to a psychiatrist who is able to prescribe wellbutrin.
Then, the neurologist should realise you suffered augmentation on Pramipexole so you will quickly suffer it again on Ropinirole. And, of course you have.
Look at RLS-UK website. Go to 'useful resources". There is an iron therapy page and a withdrawal schedule for Ropinirole.
Ask your GP for full iron panel blood tests and raise your serum ferritin above 200ųg/L via pills or iron infusion.
Then your GP /new neurologist should review and safely replace citalopram.
And straight away-you should start slowly reducing Ropinirole in accordance with the RLSUK website.
You should ask the GP/new neurologist to prescribe a low dose opioid, like codeine, to help you through the severe RLS at each dose reduction of Ropinirole.
When you reach 0.5mg Ropinirole, then you start gabapentin or pregabalin, at night only, as set out on RLS-UK website.
And you're right about UK doctors.
There are only a handful who know about it.
Thank you so so much, I had no idea people can find ease, I just thought that's it for life with this aweful thing. Dr Salim I'm under at Stafford county hospital.
He will be added to our 'bad doctors list'.
Many people can find complete relief.Many do well after iron infusions. Many find gabapentin or pregabalin resolves their symptoms.
However, for many, after years on dopamine agonists, iron infusions and gabapentinoids do not work. Experts in the USA believe it's because dopamine agonists cause permanent damage.
The RLS is then 'refractory' and low dose opioids are needed.
I take 0.4mg Buprenorphine and have zero RLS.
ObviouslyI know what you're going through because I was on Ropinirole for nearly 10 years.
Nearly everyone comes on this forum when they're suffering augmentation on Ropinirole/Pramipexole and their neurologists and doctors don't know what to do.
Dr Johnathan Partridge, a neurologist at Stoke is informed about RLS and willing to listen and learn per HilsK. You can message her about her experience.
Thank you, do I need to refer to him through the GP?
Use the chat button at the top page to message her
I answered the wrong question. It would be best if you can get your GP to refer him but I don't know if that is necessary.
Welcome to the forum. You will find lots of help, support and understanding here.
I am going to give you my usual answer which will repeat most of what has already been said.
Since you are asking for help it is obvious the ropinirole is not controlling your symptoms. I suspect you are suffering from augmentation.
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you need to come off it.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole ) although it won't be fully effective until you are off it for several weeks. 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 1-2 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 divide the doses on 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 of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Since it apparently has been while ask your doctor for a new 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. Let us know the results
While you wait for an infusion or if you can't get one 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. Also take Lactobacillus plantarum 299v as it also 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. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric 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 8 weeks if you get an infusion or after 3 months if you don't..
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 or s/he would never have prescribed a dopamine agonist 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, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
Wellbutrin and trazodone are both safe for RLS. Trazodone also helps anxiety and insomnia.
Thank you so so much, its a massive relief knowing there are people who understand and have deep knowledge of this area .
I didn't read your other post first so I didn't know you tried pregabalin. As others have said it wouldn't help while you were on ropinirole or pramipexole. Also how much did you take?
On your iron. If your ferritin is lower than 50 take take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate.
To find out what your ferritin was on your last test call your doctors office as they will have kept the result.
Thank you so so much, it's a huge relief to find people who understand and are knowledgeable on the area. Its a massive relief to know there are people who can offer the correct information.
I've recently been experimenting with making sure I'm fully hydrated (increased from 1.5L to 2L water a day) and that I refrain from eating after 6pm, and cutting back on refined sugars as recommended in Sue's welcoming email. I find it helps a bit. Any improvement is welcome. And no side effects! And presumably, no withdrawal symptoms!
After a rotten experience with Pregabilin (50mg) I now take no meds for RLS.
I think it's probably healthier to experiment first with lifestyle changes before going down the meds route. You don't know where that'll take you.
Also, I work on developing my resilience. That has a nice side effect (a nice side-effect? Who'd have thought? 😀) of benefitting all aspects of one's life. As I saw on a T-shirt once, "Yea, though I walk through the valley of death, I shall fear no evil. Coz I'm the toughest son of a bitch in the valley!" 😃
Luck
I’m in a similar position, tried pregabalin for neuropathic pain but didn’t like it, so I take nothing and live with the waking at night which I try to manage by a healthy lifestyle with mixed success. Like you I’ve learned to not get too wound up about the effects although I’d call it acceptance as there’s a phrase “what you resist, persists “ so I let it go, rather than fight it. The drugs will be there should I need them one day. I note you mention a transplant in your bio, can I recommend you read the RLS-uk.org website, especially the sections about operations and anti-nausea drugs. Zofran is one of the few which doesn’t make RLS worse
"What you resist, persists". You might be onto something there. I'm more of the Dylan Thomas school: "Do not go gentle into that good night. Rage, rage, against the dying of the light". Though I reckon your "Acceptance" makes more sense in not adding petrol to the flames. It's certainly kinder on oneself.
I shall, indeed, check out that website re. "operations n anti-nausea drugs". Zofran I shall read up on.
Thanks a lot. Very useful.
My laugh for the day - Coz I'm the toughest son of a bitch in the valley! 🤣🤣🤣
Before and I'll say it again this is not for everybody but I'll find THC I wonder drug
I have tried gabapentin which I was prescribed for severe nerve pain and it worked! Not sure if GPs willl prescribe it on a regular basis though?
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