What next: Nothing is working now. I've... - Restless Legs Syn...

Restless Legs Syndrome

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What next

Coeso profile image
47 Replies

Nothing is working now. I've tried everything that I can. Years of mirapexin then tramadol then pregabalin and gabapentin in turn. Mirapexin worked for years until I augmented and also tramadol augmented. Preg and gaba never worked although I persevered until I reached a high dose. Probably due to being on mirapexin. Anyway as I said I go to bed, up and down all night. I'm taking some Kratom which helps me to get some sleep, but I don't want to rely on it. My doctor yesterday gave me some 30mg codeine with paracetamol. I took it but not much relief. In Greece where I live they won't prescribe bupnephrenin (sorry about spelling) and only drug addicts in a special clinic get methadone. I eat carefully, ferritin is high. Don't know what to do. I'm 75 years old with over 30 years of rls. Any ideas please

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Coeso
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47 Replies
ChrisColumbus profile image
ChrisColumbus

Welcome to the forum: I'm sorry to read of your problems with RLS treatment in Greece ☹️

Others with more knowledge of drug treatment for RLS than I have will be along to advise.

How high is your serum ferritin? And I hope that you're not taking any other meds for anything else that could be triggering your RLS? See this list:

rls-uk.org/medications-avoid

Beyond this, clearly it's a great shame that buprenorphine is available in Greece but that alongside methadone may *still* only be prescribable to treat opioid dependence. This certainly *was* the case. For example, an old EU Drug Agency report I found references:

"In 2011, a total of 92 treatment units offered drug treatment in Greece: 42 OST units (33 buprenorphine and 9 providing mainly methadone)..."

I also found a 2018 reference in the Journal of Palliative Care which says that both buprenorphine and methadone can only be prescribed in Greece to treat opioid dependence.

I was hopeful that things might have changed recently when I found a reference in Greek to buprenorphine which says:

"Usos: Εξάρτηση από οπιοειδή, έντονος Πόνος, μέτριος Πόνος" =

Uses: Opioid Dependence, Severe Pain, Moderate Pain

But I presume that must just be a translation of an article into Greek, and doesn't mean that it can now be prescribed for pain etc...? Confirm with your doctors.

Coeso profile image
Coeso in reply toChrisColumbus

Yes I will. Thank you

Coeso profile image
Coeso in reply toCoeso

My ferritin is over200

Joolsg profile image
Joolsg

I'm so sorry to hear this. Will they prescribe Targinact? It is Oxycontin with Naloxone and is licensed for RLS in many countries.

Coeso profile image
Coeso in reply toJoolsg

I think I have spoken to my doctor about it. He is just my GP but is lovely and tries to help. My neurologist is also lovely but it's the law here which allows certain drugs and not.

TAYLAS profile image
TAYLAS

i know this may sound stupid but itsworking for me ...

ive changed my mindset , i no longer go to bed worrying abut my RLS and not sleeping.....

i go to bed thinking im in bed to watch movies and box sets all night , and after time i drift off.

SueJohnson profile image
SueJohnson

What about cannabis. I know it is not legal in Greece for recreational use but my understanding is that medical use is legal.

Check the amount of paracetamol in your codeine pills. You can take up to 1000 mg at one time every 4 to 6 hours but no more than 4000 mg in 24 hours.

Coeso profile image
Coeso in reply toSueJohnson

Thanks Tonight I'll try my prescription tablets which are 30mgs codeine and 400mgs paracetamol plus a boots chemist neurofen which has 400mgs ibuprofen and 12mgs codeine. It may give me some sleep. Last night I took a small level teaspoon of kratom which helps but I'm a bit scared of taking it. Now I'm so lucky because in the day I don't have any problem unless I sit for a couple of hours. I only took 50mgs tramadol at night Do you think I could increase without a problem or if it is augmentation then I'm doing more damage

SueJohnson profile image
SueJohnson in reply toCoeso

You won't do any permanent damage.

Coeso profile image
Coeso in reply toSueJohnson

Thank you

SueJohnson profile image
SueJohnson in reply toCoeso

The usual effective total dose over 24 hours for tramadol is 100 to 200 mg according to the Mayo Algorithm so you definitely have room to increase it.

Niewiem profile image
Niewiem in reply toCoeso

watch for codeine intake, some people lack this enzyme to brake it down what that mean more you take less it works. My max would be 15-50mg above less effective or no difference at all. Tramadol is ok at 50mg won't work at 100 is awesome.

Coeso profile image
Coeso

Last night all well until I got into bed after taking 1 lonalgal (500 paracetamol and30mgcodeine) plus 1 neurofen plus (400 ibuprofen and 12mg codeine) so 42mgs codeine. I still had to get up after 30 minutes an take a level teaspoon kratom and an ambien. I tied a tight band round my ankle(it helps, I don't know how)Luckily I slept from 2am until 9. Let's see how we get o tonight. I dread going to bed.

SueJohnson profile image
SueJohnson in reply toCoeso

That's great that you got 7 hours sleep.

donoughts profile image
donoughts

I have experienced all the same over 17 years and docs have never told me to wean off the present dopamine agonist drug before starting a new one - ,big mistake - I have had violent reactions when starting a new one because of that serious mistake. I am trying the last resort as nothing has ever worked which is weaning off Pramipexole and starting non dopamine agonist drug Gabapentin. it is hard and no guarantee it will work in the next two months. But you must get off the D.As as they go into augmentation as you increase dosage. I have heard from a you tube specialist that if you have been on DA for years like us then Gabapentin might not work. Blame my docs for that entirely as I could have come off DA years ago. I have fingers and toes crossed that it will work otherwise I am really sunk,,!

Mikisot profile image
Mikisot

Listen Coeso. Stop eating too much. Or cut calory intake in half. Your last meal must be between 15h - 16h. Don't eat or drink anything before bedtime. Your body resist to this regime and RLS doesn't disappear instantly. But it will fade slowely. After no long time you'll feel the first releive. Go this way keeping to the schedule. After month or later you'll enjoy full absence of RLS. Go the same way any further (all your life) If you return to your unhealthy stile of life the syndrome will be back. I suffered RLS nearly 30 years. After many unsuccessful attempts to stop it, I passed to this daily routine. I cut calories in half and had two meals daily. 6.30Am - 3Pm. After less than forty days I was free from RLS. There are enough evidences that this practice has helped many LRS suffering people.

Swearing is against forum rules. Kaarina - admin

Coeso profile image
Coeso in reply toMikisot

Thanks. It's a bit difficult not to drink anything between 3pm and 10pm but it's worth trying

Mikisot profile image
Mikisot in reply toCoeso

You can drink water, tea, wine or some vegetable juice. One small scotch doesn't matter. This way you team the hunger. One banana and a cup of yogurt go well too. From one hand you avoid the stress, from another hand you guarantee full relaxation for your stomachs and intestines.

Niewiem profile image
Niewiem in reply toMikisot

that is so awesome, thank you for telling us. I'd loke to do that asap. My hunger PAIN is so big at 7pm I have to eat. How to combat this pain?

Mikisot profile image
Mikisot in reply toNiewiem

Hello. It is normal to be hungry the first several days or week. To ignore the hunger drink vegetable juice, hot slightly salted water, brine, wine, small whiskey (alcohol calm nervous). You can eat 1 banana + yogurt or one potato. The sleep will be disturbed as initial. Gradually the body passes from one routine to another. It takes time, depends on the person himself and circumstances. This regimen makes miracles. It helped many people to get rid not only of RLS, but of other different health issues.

Niewiem profile image
Niewiem in reply toMikisot

genius, thank you

Mikisot profile image
Mikisot in reply toNiewiem

One more thing. Don't consume sugary foods, fat meat, fat cheese, fried food, hard raw vegetable salads rich of fibres. Too much beans, lentils, nuts. The last meal must be easy and fast digested by the body.

Niewiem profile image
Niewiem in reply toMikisot

very good point, bye bye my loved carrot......

Niewiem profile image
Niewiem in reply toMikisot

also what is your bmi with this?

Mikisot profile image
Mikisot in reply toNiewiem

What is it bmi ?

Mikisot profile image
Mikisot in reply toMikisot

176cm/67kg With RLS or without RLS I maintain constant weight of 65 - 67kg. I do exercises regularly three to four times weekly. Physical exercises strengthen the body and normalise incorrect digestion. Internal organs begin to function properly.

Niewiem profile image
Niewiem in reply toMikisot

body mass index, shows how is your weight related to healthy weight, google it, why I'm asking is I want to see where your strict diet keeps your weight at what level, bmi 20 or 36 is the difference between good and severely obese, so it is an gage where you are

Mikisot profile image
Mikisot in reply toNiewiem

176cm/67kg without big changes

Niewiem profile image
Niewiem in reply toMikisot

your mbi is 21.6, awesome, I'm looking into it and gona try to follow up, mine is 23.4 with small beer belly, hahha. If the carrot is boiled than would you say easy to digest than?

Mikisot profile image
Mikisot in reply toNiewiem

Good afternoon. There is something curious happened since I started these changings. Seventh months ago (when I still suffered RLS) my nervous sistem was very sensitive. If I delayed my last meal (for some reason) one or two hours (from 15h to 17h) RLS appeared. It seems that the time for full digesting was not enough. Ok, the next day I eated my dinner 14.30, tonight my legs were cool - no problem. I continued strictly this schedule (of early eating) and RLS didn't appear. Several months later, again I was late for my last meal. Taked it 5.30pm. "Horror" I told myself. RLS will come and ruin all my sleep. But, nothing of this kind. My feet quieted. RLS didn't appear all night. It was miracle. Still I was scared and turned back to my restricted schedule the next few days. Ok, let's see what was going on? I again had my dinner 5.30pm and again nothing. No RLS. Next day I repeated the same. No, RLS has gone. One more or two tests(6pm) approved that RLS disapeared. I explain this with the fact that over these 5 - 6 months the body improved the quality of digesting, increased the speed of digesting, and diminished my high sensitivity. Yes, now I can eat my last meal 5pm 6pm or 7pm without problems. But I don't want to challenge my destiny and again passed to my former 3pm food consumption.

Swear word deleted as against forum rules. Kaarina - admin

amrob123 profile image
amrob123 in reply toMikisot

How fascinating. Did you ever test for small intestinal bacterial overgrowth (SIBO)?

Mikisot profile image
Mikisot in reply toamrob123

No. It is useless. Doctors give me one result (one defect) in my body without telling me how to terminate it. I mean RLS. Listen, I consulted my health provider first time. After listening my complains he told me. "You must turn to a healthy stille of life, free from your bad habits, keep vital, keep to a steady daily regime. When you achieve this, come here. Then we'll talk about your RLS." The next few days I analyzed my problems. I am sporting nature, don't smoke, don't drink much, eate nutritional food. My big problem was late dinner (mixed time between 7pm and 9pm) big quantity dificult, slow digested food. (I have good appetite) The second negative was, disordered time of going to bed and awakening. (This badly affected my sleep) So, I made a resolution and tried my best to correct my life this direction. Was not necessary to go to doctor any more. The result didn't come right away, but it came after all. Slowely and securely. (I explained how, in my post above) And seven months evercince I am free of RLS

Niewiem profile image
Niewiem in reply toMikisot

interesting, are you any meds or happy puppy no meds?

Mikisot profile image
Mikisot in reply toNiewiem

I don't understand. Translate.

Niewiem profile image
Niewiem in reply toMikisot

meaning: do you take any medication?

Mikisot profile image
Mikisot in reply toNiewiem

When I had RLS (7 months ago) I consumed Vitamins, Magnesium citrate, Iron but didn't notice effect. Now, without RLS I don't drink any. I make light and heavy exercises any other day and started vitamins complex, propolis and some magnesium. For profilactic usage.

Niewiem profile image
Niewiem in reply toMikisot

ok, so good for you. Do you know there are two types of rls? Which one do you have? Ok, I'm helping you to understand. 1. is primary you are born with it, 2. is when rls arrived some time in your life, so which one do you have. My gues is no, 2, is it not

Mikisot profile image
Mikisot in reply toNiewiem

My father suffered some form of RLS but it seemed that his RLS was provoked by other underlying bad conditions. I started feeling RLS when I was 25 (now I am 51) in light form. I worked night shifts and consumed food at 3 Am. (stupid breakfast) It helped to appear RLS. Additionally disordered regime of getting to bed/awakening stimulated RLS Those years I didn't pay much attention. I had many calm, peaceful years because I kept to healthy food and sporting. But when I aged at 46 the RLS began to suck. My state deteriorated despite healthy food and sport. Still I wasn't oriented what might be the problem. After different desperate attempts and analyses I came to conclusion that late evening alimentation is the culprit. Also my wrong sleeping habits put fuel in the fire. Came time to stop this stupid daily routine. And I did it.

Niewiem profile image
Niewiem in reply toMikisot

basically you don't take any prescription medication, right?

Mikisot profile image
Mikisot in reply toNiewiem

No, I take vitamin complex and magnesium. I believe they are useful.

amrob123 profile image
amrob123 in reply toMikisot

Where can I find the evidence it has helped other people please?

Mikisot profile image
Mikisot in reply toamrob123

No evidence. No evidence without correcting your stile of life. Follow the instruction how to be strong, agile, sustainable, fast and challenging. Then RLS will fly away.

ziggypiggy profile image
ziggypiggy

Clearly the answer is to go to a new doctor and tell them you're a long time herion user and would like to come off the drug. Kidding of course. But wouldn't blame someone if they did.

Coeso profile image
Coeso in reply toziggypiggy

Do you know I've actually thought of going to a drug addict clinic but I know they won't take me seriously

Beat-Down profile image
Beat-Down

Sorry to hear about your battle with RLS, because of this forum I learned two hugely important things that have helped me get off all RLS drugs and eliminate 95% of my RLS after 11 years. None to very little RLS for 3 months (fingers crossed it continues to work). First was about augmentation I new nothing about it and my Neurologists never discussed. I was able to wean off Pramipexole using Gabapentin and Pregabalin. Then I learned about Iron and Ferritin again no mention from any doctor. I actually told my GP about using Iron to eliminate RLS and he said he learned something and thanked me. My initial Iron panel was done 1/7/25 Iron level was on low side at 59, Ferritin was 35, saturation was 17%. Started 325mg of Ferrous Gluconate on 1/14/25 taking between breakfast and lunch with 2-4oz orange juice. Within a week my RLS started to reduced to sporadic incident's every night and then after about a month its gone with just a minor episode here and there. During that first month I slowly reduced Gabapentin and Pregabalin to zero. Latest's 3/13/25 Iron 72ug/dl, ferritin 150ng/mL and saturation 35%. Don't know if you have tried but I would encourage everyone to try the iron panel test to see were your levels are. Again I owe a huge debt of gratitude to this forum as I was getting desperate with 2-4 hours sleep each night. Thanks to all who contribute.

Wordsworth99 profile image
Wordsworth99 in reply toBeat-Down

That’s great! Did you use gabapentin and pregabalin at the same time to wean off the Pramipexole?

Coeso profile image
Coeso in reply toBeat-Down

My iron panel is fine. In fact besides ferritin over 200 my Haematocrit is. 46. I'm afraid to take more iron. I tried preg and gaba but although I persevered until the gaba was a lot, it didn't improve my rls. I think I took mirapexin for too many years and it's destroyed my receptors or something

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