hi, I am new to this sight. I live in Scotland but at present I am in Australia visiting my daughter. My RLS is totally out of control and have not slept for nights on end. The Doctors in my area seem to know little about RLS and even less about what to prescribe. I have been on many different meds over the years but nothing seems to work. I am presently taking pramipexole which seemed to work for about 2 weeks then has not worked at all since. I really don’t know where to turn to next. I have had this for more than twenty years but it is now so bad I can’t see a way forward. I have been waiting over four years to see a neurologist but since covid nothing seems to be happening with hospitals and have heard that doctors surgery have stopped answering their phones since I have been away. Heading back to Scotland soon. Would be very grateful for any tips on non medication ways of relieving the RLS.
RLS out of control: hi, I am new to... - Restless Legs Syn...
RLS out of control
Hi Lolly, can you get your hands on some iron tablets? Preferably ferrous bisglycinate (take 25mg to 50mg), but at this point any iron, even ferrous sulfate (65mg), will do. Try to take some vitamin c with it if it’s ferrous sulfate. Basically, ask the pharmacist for the most “bioavailable” iron in the store. You must take it on an empty stomach (no matter what kind of iron) at least one hour before bed. Iron taken this way stops my RLS in one hour, for one night, as well as several other members on here. You can take the iron along side the DA, but put at least an hour in-between the two. The iron will work better with the DA than without.
If you manage to scale back the RLS, but not all the way, try laying on your stomach. That seems to be the best sleeping position for RLS. Another desperate position you can try is to go on your knees (pillow under each knee) on the floor then plop your upper body on an ottoman or couch or bed if low enough. I have fallen asleep this way waiting for the iron to kick in. Whenever your brain senses instability it releases dopamine and that dopamine is what quiets our limbs. Dopamine is released when we stand to balance us and when we walk to coordinate movement. That’s why people pace around when they have RLS. Standing on one foot will probably release even more dopamine than walking around. Being on all fours actually requires a lot of coordination, but you can’t sleep that way, hence the modification with the ottoman.
Some other satisfied customers:
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The other important thing to know is certain medications will make your RLS go crazy, like SSRIs, HRT, statins, melatonin, Benedryl, Zantac, maybe PPIs, maybe calcium channel blockers. The list is pretty long, but in most cases it’s either a SSRI or HRT, that is the culprit. Also, don’t eat a big dinner and stop all food after 7pm.
Below is a post about Kratom which I just read is illegal in Australia. Maybe Hirsuta then which is in the Kratom family? Many people get instant relief from these two substances, but not worth going to jail over. No matter what, it might be worth looking into when you return home to Scotland. Here’s the post:
“TeddiJNewmom5673 days agoI hear you-that is how I found this stuff-on this site out of sheer desperation. first, try some red vein kratom powder from mitragaia.com. you can try small sample amounts. you can also buy capsules, which take a bit longer to work. powder works in minutes. start with 1 to 1/2 of a teaspoon only, then add more after 30 minutes, if you need it. it is truly disgusting-like drinkinging dirt- but i just use a small amount of water and gag it down. It's worth it as almost immediately (for me) the rls is gone. I keep a teaspoon, a cup, and water next to my bed. I also combine the capsules with the powder sometimes to sleep longer. you can keep capsules in your pocket, too. hirsuta is another option from teatimebotanicals. supposedly it is not addictive; kratom is for some people, but it works so well for so many issues and for so many people. let me know!”
thankyou for info. I will study them tomorrow
you will probably have to order it as tea from the netherlands: kraatje.eu has worked great for other UK members on here.
Iron may help you as Salem writes, and it's always worth trying; it didn't help me, but Magnesium Citrate did. Changes in diet and medications can also be transformative (as well as Salem's advice see SueJohnson 's and Joolsg 's Replies in particular).
Kratom helps some, although others warn against it: it is also illegal in the UK although it can be sourced from the Netherlands.
Most doctors - and most neurologists - know next to nothing about RLS: it's not taught in the UK. You'll get better advice in this forum about RLS treatments than you'll get from most doctors.
BTW while it can be difficult to get appointments with NHS doctors and hospitals it's by no means impossible. Some surgeries and NHS trusts are much better than others. I've had at least 50 consultations, scans and treatment sessions over the last 2 years and have two more scheduled over the next two weeks.
thanks for info. It’s late at night here and my legs are giving me hell but will study all replys tomorrow. Getting to see Doctor in my postcode is nigh on impossible. I have not seen one for about four years. I have had meds prescribed and changed by phone aPpointments. I am T2 diabetic and did not see anybody for almost three years until I went into surgery and had a stand off with receptionists
Hmm, and this is supposed to be a *National* health service, not a post code lottery. I've heard complaints of not being able to get through on the phone, and of not being able to get an appointment for 2+ weeks, but that sounds shocking. 🤨 The 'easy' solution is to change surgery, but if that was an option you'd have done it. And unfortunately going private does not guarantee that you'll get any better RLS advice, although it could possibly help with other needs...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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.
thanks for info Sue. It’s past 2am and my legs are going mental. Will study all info tomorrow
Magnesium Citrate is fine, but magnesium glycinate is the one most recommended as it has the fewest side effects. As far as iron, you really need to have your ferritin checked to see if you really need it. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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, fast after midnight and have your test in the morning. 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 advice. As far as taking iron now, as Salem Lake mentioned, take it with 100 mg of vitamin C at night. Be sure to take it at the same time, since you want it to be at least 24 hours apart as taking it closer limits the absorption. Take it 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 or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours.
Since the pramipexole is no longer working, you are suffering from augmentation and need to come off it. To come off pramipexole, reduce by .125 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. Others will recommend kratom as mentioned above. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. You mentioned that you have tried every medicine. Have you tried gabapentin or pregabalin and what was your experience with them? 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 atHttps://mayoclinicproceedings.org/a...
You say you've been on Pramipexole for 2 weeks and it's not working. Were you on Ropinirole before that? If so, I suspect you will have suffered augmentation ( a severe, drug induced worsening of RLS).
Sadly, RLS isn't taught in the UK so the majority of GPs AND neurologists know nothing. They do not realise that Ropinirole and Pramipexole actually feed the disease, like gasoline on a fire.
If you tell us all the medications you're taking now, including OTC meds and the meds you were taking for RLS before Pramipexole, we can guide you towards help.
We can tell you what to print off to show your GP and what to ask for to help you get RLS under control.
You're correct that the NHS crisis has made things worse, but most in the UK have to navigate their way alone due to the complete lack of training and education in the medical profession.
So many on this site have been in your situation, and many are now in a much better position, with their RLS controlled with better medication and/ or iron infusions to raise their serum ferritin above 100.
Sue recommends Magnesium (bis) (di) Glycinate rather than Citrate which is fair enough, in that Glycinate won't cause diarrhoea - which Citrate can if taken in too large a dose - and Glycinate can also aid sleep.
However you are much more likely to find Mg Citrate than Glycinate OTC when you're back in the UK (as well as Oxide, which is only worth taking for constipation relief).
Holland & Barrett for example, despite recommending Glycinate, currently offer 42 magnesium products, of which six list Citrate with zero Glycinate based products.
Glycinate seems easier to find in the US where Sue is based. I don't know the position in Oz, but as you're coming back to the UK soon....
Anyway, you should try iron supplementation first (unless you know that your serum Ferritin figure is well over 100), with magnesium as a backup if iron doesn't work. See my Post on magnesium if you want to pursue this
Opiates like Codeine or Tramadol really help when the rls is out of control. If you can get some they may help until you get back to Scotland. And scale back the Pramipexole slowly as others advised.
hi, how did it go on you flight over to Oz? I live in Perth WA, and will be travelling to the States next month, I’m dreading it 🥴
Book your flight for early in the day and book an aisle seat so you can get up and walk around and preferably an emergency exit or bulkhead. Pack activities that serve as distractions. If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. You can join for $40 even if you don't live in the US and it is well worth it. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot. RLS-UK also has a medical alert card available to members for things like flights.
I have had more than one doctor tell me that the problem is that iron is not being transferred from the blood to the brain in sufficient quantities. If you are iron deficient, taking an iron supplement may be helpful, but if you have sufficient iron in your blood you need something to transport the iron from the blood to the brain. The Parkinson's drugs such as pramipexole (Mirapex) have been successful in treating RLS because they take care of that problem. Over time they become less effective (augmentation) and have to be replaced with something else. A magnesium supplement seems to be helpful, but for me, magnesium by itself didn't work.
Ferritin is a good indicator of the iron in the brain and that is why it is used. Parkinson's drugs don't have anything to do with transporting iron to the brain.
Although I haven''t personally done any research into the mechanism by which Parkinson's drugs are effective in relieving the symptoms of RLS, it is pretty well established that in the case of Parkinson's disease, drugs such as Pramipexole transport dopamine to the brain. I suppose the reasoning is that since RLS is present when there is a deficiency of iron in the brain and drugs like Pramipexole relieve the RLS symptoms, it must work in the same way: dopamine for Parkinson's and iron for RLS. Opposed to what my doctors told me, you say "Parkinson's drugs don't have anything to do with transporting iron to the brain." Then what do the Parkinson's drugs do? How do they relieve RLS symptoms?
The medicines are converted to dopamine to the brain. That is what relieves RLS symptoms.
The reason that your rls is out of control is probably because your diet is diffrerent to your normal diet, Are you drinking more alcohol os eating more high carb foods? eating more fast foods or processed food? more food fried in refined seed oils? All these foods contribute to systemic inflammation which makes your nerves hypersensitive which leads to rls.
I’m so sorry to hear this and sorry too that I’m unable to suggest any effective medications. I suffer with restless legs too, so would love to hear if anyone has an effective recommendation? Meanwhile, I wish you a safe and comfortable homeward journey home.
Hi Lolllydogs, where in Aus are you ? I’m in Perth, maybe you could see a Neurologist here? I have been seeing one for several years, let me know if your here in WA.
Have had rls for over 25 years. Was on ropinirole for years until augmentation kicked in. Now on 1200 of gabapentin, which as I understand, is one of the first options recommended by specialists. It was ok as I was getting about 5 hours of sleep a night with about 2-3 interruptions a, visiting the bathroom. Recently my gp recommended trazodone. I now take 75 mg of trazodone a night and my sleep has improved immensely. I normally sleep about 7-8 hours a night with 1-2 interruptions. I seem to sleep much more soundly. My experience is that rls is made worse by eating certain foods, such as sugar, and by stress. Trazodone helps to lessens any anxiety as you are trying to fall asleep. I can remember when I use to dread bedtime as I awaited my rls symptoms. Now I lay down and look forward to a restful night. Good luck to you.
Try 900mg of Gabapentin as soon as it comes on. Dont take the Gabapentin during day only that one hit as soon as you know you are in its grips.
me again saying 1/2 ounce karatom powder over 4 to 8 hours prior to bedtime. Works wonders for me for the past 10 years. Just don’t abuse it. 1tsp in water then 3 or 4 more if your legs won’t calm.
Good luck
I am not sure if you can find a doctor in Australia to prescribe you some Endone to help with the flight back home.
Finding a neurologist who knows anything about RLS is very slim .
I read the other day number of sufferers globally is up to 15 percent surely something has to give soon.
I was on Ropinerole for a few years with limited results and the nausea was terrible.Gabapentin was useless for me. My recent Dr. tried me on a tiny dose (5mg) of Methadone. No episodes, no side effects since (about 4 months) and I can get 10hrs sleep on the weekends! It literally saved my life as I was probably within weeks of suicide. Here in the U.S., some sleep specialists also specialize in RLS, but there is little research on it.
thank you to everyone for their suggestions. I am working my way thru them all. I am heading back to Scotland next week and hope to try gabapentin soon. I neither drink alcohol or smoke and my food intake has been reduced as I find it hard to eat much in this heat. Once again thank you and it is so nice to find people that understand how much RLS messes with you life
One thing that works for me: I bought a super duper massage gun and use it on my legs when my medicine does not work. My sister also swears by it.
have one of these. Sometimes it works sometime it doesn’t. I think this is why I find RLS difficult to deal with because what works today does not work tomorrow. Last night I did not get a wink of sleep. I tried everything that I have to get it to settle down but nothing worked. I was up and down all night
I am so sorry! I have been plagued with RLS for 20+ years.
just 5mg of Methadone may fix you up. Depends on the person and if you take prednisone that dilutes it. Some people need 15mg per day.
Gabapentin works great for for most.
There is a new drug that works best
See RLS.ORG
There a a patch that works well for many and a few others.
Exercise makes it go away as well, until you stop anyway.
The harder and longer you exercise the longer it stays away.
I have had it for 50 years.
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