I am new to this board and registered because my RLS spread to my arms, shoulders, back and neck one week ago and now I am really scared, because having an almost overall RLS is terrible.
RLS for me started in 2018 when I was 34 years old "within a day" (or lets say 3-7 days together with a migraine and that "bubbles in my veins" feeling). I never had any strange feelings in my legs and suddenly that world was gone. It is still far away from the PLMD part and I never had such a big urge to move my legs. That is why I had a long journey until a doctor put some symptoms together after I told him that its getting ugly if I don't move my legs for some time and I get a relief of pain immediately if I move them or just stand up. That is why he did the LevoDopa Test with me and bam...positive (no more pain or weird feelings in my legs for some hours).
So it seems I am much more on the sensoric side of RLS and until it started in 2018 I never had a day when symptoms where not there, so I am still wondering about that IRLS questionnaire. Are there really people outside, where RLS is taking holidays for some time without medication ???
So bad news was that it never gave me some "free time" but the huge advantage: I found out that sometimes if I am lying long enough (which means for 12 hours to some days, f.e. because of corona) in bed, symptoms vanished as long as I didn't get up for a longer period of time (lets say 30 minutes or longer to really wake up my body). Did someone ever notice something like this?
If you put those findings together, does it still like 100% RLS for you?
But keep in mind, most of the nights since 2018 I definately needed RLS medication and finally got to a good working combination with 75-100mg Restex directly before going to sleep and 75-150mg Pregabalin per day.
Since December '22 I got more and more tired during the days even it seemed like I could sleep most of the night so I unfortunetaley begang to try some medical treatment: I used huge amounts of Vit B- and D- supplements and now its getting really weird: I started to take 100mg Pregnanolone (which also took some weeks before RLS started in my legs in 2018, but I remembered that to late) for two days and suddenly I saw that old "bubbles in my veins" "friend" again and this time he moved in to my arms and body which is at the moment still to much for me, my brain somehow managed to move my lower body part (legs) a bit besides to survive those RLS feeling but I really doubt this will be possible if nearly my whole body is affected now.
What do you think? Could this be augmentation because of LevoDopa or something? Doctors always keep rewriting that augmentation could affect other parts of the body but I never heard of any example when and to whom this actually happened. Did you maybe? Did it move back to only the legs? And do you think in my case that it could even be augmentation with 100mg Restex or maybe because of the long term use (4,5 years with Restex)? Or did I finally destroy my body with silly self medication (Pregenolone)? And how can I survive this period? I already increased Pregabalin to 300mg per day and at least try to withdraw Restex (which of course doesn't make it any better a.t.m.), my neurologist prescribed me Tillidin which doesn't really help me and I tried to start with Neupro but the side effects are getting too much for me after about 8 hours. Atm I cannot sleep, work, or do anything together with my family...
Do you have an advise? Please tell me I am not alone with those feelings!
Kind regards
Carl
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Yes you are augmenting and need to come off the restex. LevoDopa has never been used to treat RLS. It is used for Parkinson's patients. Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and 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. To come off Restex, reduce by a very small amount 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. But in the long run, you will be glad you came off it. I'm not familiar with Tillidin but since it is a narcotic it will probably help you. On the pregabalin if you just increased it to 300 a day, I would go back to 150 mg. If it has been a week or longer you will have to reduce it very very slowly or you will have withdrawal symptoms. The reason to reduce it is 300 is a high dose and it won't have much effect until you are off restex for awhile. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin daily." If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of 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 at Https://mayoclinicproceedings.org/a... Pregnenolone by the way increases estrogen and estrogen is know to make RLS worse for most.
Meanwhile 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.
Restex is not available here in the UK but it contains levodopa, which has the highest rate of augmentation.It seems clear that you are suffering augmentation and you need to slowly reduce the restex. The pregabalin won't help until about 3 weeks after your last dose of restex.
Once off restex, the intense RLS will settle .
Read the RLS UK website and look at the article on augmentation.
Read the Mayo algorithm and ensure you get full panel blood tests and ensure serum iron is above 60 and ser ferritin above 100.
Dopamine agonists like levodopa and the Neupro patch are no longer first line treatment because of the high rate of augmentation ( increase in severity of RLS).
Most of the members on here have experienced augmentation and most have managed to get off dopaminergic drugs.
Pregabalin is often very effective once off restex and low dose opioids will help the withdrawal symptoms. Tillidin seems to be a low dose opioid and it might help as you reduce your dose of restex.
Hi Carl, I have no doubt that the pregnenolone provoked the symptoms of RLS when you were 34. We, who are pre-disposed to RLS, cannot take that supplement or DHEA or 5htp or melatonin or testosterone replacement therapy or L-tryptophan. I hope you’re not taking other RLS provoking substances like an SSRI? When I was taking melatonin it gave me full body RLS. Good news is, these substances, that I mentioned above, do NOT make our already lousy dopamine receptors any more lousy. That’s what RLS is, essentially, lousy receptors and low stores of BRAIN iron, not necessarily low stores of body iron. The above substances just make the “symptoms” of RLS worse because they are direct or indirect dopamine antagonists. I believe that in the long run these dopamine antagonists will actually up-regulate our dopamine receptors. It’s just too painful to take these substances in an effort to up-regulate our receptors, especially ones like Pregnenolone, which have a long half life.
You should have seen a nice decline in symptoms when you stopped the Pregnenolone? Now you need to slowly stop the Restex. And you should probably tell us what other medicines you are taking ie PPIs - which gave me terrible migraines, but did not seem to worsen my RLS, even though it does in many.
When I was taking the melatonin, I found that taking 25 to 50mg of ferrous bisglycinate would stop my RLS in one hour, for one night. When I stopped the melatonin, my RLS went silent, very silent, and I no longer needed the iron. Fast forward a decade from that point and my RLS symptoms returned and I’m back on the iron.
Listen man. Don't waste your time with medications. You can't achieve the nessesary treatment. I suffered RLS for many years and tried different methods and medicines to cure this shit. NOTHING! RLS continued to drive me crazy. Last year I entered Internet and learned about "Intermittent fasting" It was something new for me and seemed hopeful. I didn't hesitate much and changed my daily routine applying this kind of fasting. I decreased my calory intake in half and consumed my food two times a day. Morning 8h and afternoon 15h - 16h. The expected result didn't come soon. My body resisted much and I suffered many irritabilities, sleepless nights. After two weeks torture things got better and I felt relaxation. So I went on this way until all RLS symptoms disappeared. Sometimes later I felt trembling my legs and nervous convulsions. I continued to maintain this strict regime of feeding. At last (after 42 days) RLS disappeared totally. Not a hint or sign of this syndrome. Intermittent fasting works pretty good.
There are others on this forum that have found relief by fasting. But I don't understand how you do it. Aside from having a great deal of discipline, aren't there times when social occasions force you to dine later in the evening? If so, does the RLS come back that night?
After these 40 (very important )days of recuperation when I brake the regime, RLS appears in not so severe form. But as the time goes by, day after day (as much time passes) keeping the same strict regime RLS totally disappear even if I consume food late in the night. It looks that the body at last is accustomed to this stile of life and nothing can brake this new condition of relief. Sometimes I drink alkohol late afternoon (one glass wine) and don't have RLS. I continue to make my daily (40 min) exercises. Physical activity helps for keeping RLS away.
Intermittent fasting is easy when you eat a low carb diet because the low carb diet keeps the blood sugar down and blood sugar promotes the relase of the hunger hormone.
This is the first time I've heard that fasting helps RLS. Very interesting! I tried to search this site to see if others have tried this, but nothing comes up.
It doesn't work for everyone.I tried very restricted diets for long, long time periods. It didn't help RLS in the slightest. I practise intermittent fasting for my MS as it's supposed to reduce inflammation and encourage T cell production. It makes zero difference to my RLS.
The only thing that has helped is finding the right medication.
Accord brand of Buprenorphine has completely resolved my RLS. I sleep 8 hour's every night & never get RLS.
If you want to try restricted diets or intermittent fasting, set yourself a time period. You'll know within 2 months if it's going to help.
Yes. It seems I didn't have RLS throughout the day. My legs start jumping 30 min. after I lay in bed. I noticed that RLS appeared when still there is some digestion. When I have my dinner at 19h my stomach can't free from the food 22.30h (when I go to sleep) and digestion continues till 3am. It was exactly the time when RLS disappeared. It means, if I want to sleep normaly I must finish my last meal at 15h or 16h. So the digestion to over till 22h. I turned the clock back and finished my dinner 16h. First days at 22h I was feeling hunger and RLS appeared. I was consistent and continued to eat my food at 16h. Slowly the body use to this regimen and the hunger at 22h began to decrease. After 10 days I got to bed with no digestion and I wasn't hungry. RLS gradually weakened and after another 10 days it was gone. Now, even if I consume some food accidentaly at 9, 10, 11h pm RLS doesn't appear. Nevertheless I continue taking my last meal at 4pm and enjoy good health.
Numerous people on here find that “fasting” from the about 7pm until breakfast helps with their RLS, practically from day one. There’s something about late night eating (of any food item) that triggers worsened RLS for many. So by stopping that there’s some immediate relief and in the long run the fasting up-regulates the dopamine receptors. Then, if during your “eating window” (say between 9am and 7pm) you also severely restrict your calories then it seems impossible not to up- regulate your receptors beyond baseline. If the calorie restriction is stopped for a long enough period of time I assume Mikisot’s receptors will return to baseline.
I totally agree. there are NO safe or effective drugs that help PLS or PLM at all. They all have side effects. They are all horrible to withdraw from and as someone who has perfect brain ferritin levels and even stopped my anti depressants, came off all drugs related to RLS treatment , I for one will never ever consider trying anything else. Everything allegedly makes it worse. everything allegedly makes it better. Well, that’s an easy cop out and of no help whatsoever. Life on the meds was beyond hellish and no wonder people with RLS are desperate. I’ve had 60 years of this crap and I’m an expert on my own body now. I sleep for 2-3 hours each night, get up briefly , have a cuppa and go back to bed and sleep for another 2-3 hours before it starts again. I can put up with that as it’s preferable to suffering horrific withdrawal and complete lack of control of normal function. Good luck anyone with this because there is no cure and there won’t be in my lifetime.
i love your answer i am so with you i am sat here 4.03am in australia ive had numerous different meds ive been to bed had i hour intermittent sleep with pramipexole paracetamol at 8 pm lyrica at 12 and codeine at 3.30 am this is constant every night ...im going to bed now codeine makes me sleepy xx
I've never had the bubbles feeling, but have had RLS manifest in my arms. I've tried Gabapentin (useless) and Ropinerole for a few years with limited results with really bad nausea. A found a Dr. that tried me on a low dose of Methadone (5mg). I haven't had ANY symptoms in months and no side effects. It literally saved my life as I was really close to suicide. Keep going to as many Drs. as you can. Some sleep doctors specialize in RLS, but unfortunately, I don't think there is much research done on it. I hope you find relief, I know what you're going through!
Just to let you know that once you're off levodopa, the RLS will settle. If you find the right treatment ( either pregabalin or low dose opioids) you won't have any RLS.I had RLS in my arms, hands, back, stomach and face when on Ropinirole ( dopamine agonist).
My RLS is now completely controlled with 0.4mg Buprenorphine at night. Zero RLS.
It is possible, but you first have to get off the levodopa and do not let your doctors prescribe Ropinirole, Pramipexole or the Neupro patch.
Stay strong. You're young and will be able to get through the withdrawal. It is tough but the RLS eventually settles and you'll be so glad you got off levodopa.
Educate your doctors. They need to read the Mayo algorithm and stop prescribing dopaminergic meds.
That‘s interesting. Did you have those augmentation symptoms suddenly and in addition to the legs then? I am noticing the R(estless)E(verything)S throughout the whole day now, sometimes even when moving an arm, where it normaly should calm down totally.
Yes. Almost overnight. Symptoms moved to other body parts and started all day and all night. It became unbearable. I couldn't sit still. My doctor had no idea what to do. Luckily I found this site, was told it was augmentation and that I had to reduce the Ropinirole. I reduced from 4mg to zero over about 2 months.It was horrendous. The RLS increases with each drop in dose. The final month was hell. Severe withdrawal symptoms and no sleep for days. Then it starts to settle.
I tried pregabalin and gabapentin and tramadol. I was on 150mg pregabalin and 25mg of Oxycontin for 5 years and it was tolerable, but not very effective. The top RLS specialist in the UK said it was as good as it could ever be.
He was wrong.
Methadone and Buprenorphine seem to work for refractory RLS when other opioids have failed.
Everyone is different and you may find raising serum ferritin and iron levels works for you or pregabalin a d a low dose of Oxycontin.
But I know your RLS will not settle until you get off levodopa.
It‘s interesting (and maybe a bit scary) to see that although we probably fight against the same illness in our bodies, everybody is fighting a bit for himself.
At least I think that definately „lousy dopamine-receptors“ could be the big similarity for all of us, or would more brain iron lead to a fast cure for all of us? And why isn‘t there more research about how to increase brain iron level then??
The big questions for me at the moment are: Am I the only one with such a sudden „switch-like“ RLS onset that has never stopped again for an hour since, or did Restex (Levodopa) maybe even block my bodies ability to cure the symptoms by itself?Additionally (biggest question) why do some people have RLS and others RAS and some like me with RLS get a (hopefully!) reversible (??) RAS and more when augmenting? Are just different areas in spine cord or in the brain affected?
Despite having silly neurologists and taking Restex, I did much research by myself and found unfortunately nothing that could be a reason for a secondary RLS in my blood tests. This time I had Iron, Ferritin, Transferine parameters already 70% filled, far over the RLS threshold. Vitamines always were okay, only Vitamine D was lousy, esp. in 2018 it was hardly measurable. So I am supplementing these from time to time during winter season.I had an undiscovered disc herniation of my cervical spine when I was 17 (which maybe led to some cns issues later on?), I still remember when I smoked marihuana in school (or a bit later) I had a tingling and burning feeling in my arms and legs (quite similar to RLS feelings, huh?) and some additional weird internal tremor feeling (which was maybe a first sign of „lousy dopamine receptors“).
But still I stayed at full health until 32. That year I got a condition called „benign fasciculation syndrome“, together with fatigue, maybe because of longterm use of finasteride (for the silly intention of having full hair) and two years later, maybe with the help of pregnanolone and a SSRI prescribed by a neurologist who saw my bodywide fasciculations, RLS started.
Diets and everything that is helping to get a healthy gut of course cannot be wrong. I believe that despite genetic risk factors, big diseases like Parkinson, MS, etc. have their origin there. But the underlying case is, if getting a healthy gut can only prevent to get the disease or also heal it. And in our case there seem to be RLS sufferers with very different severeness. And I doubt the biggest RLS can be healed with a 4 weeks diet. In my case I learned that RLS is like a one way road anyway. At the moment I even have it in my chin and ears (it’s like an itchy feeling). Because my Levodopa Dosage was quite low over the years I hope that Pregnanolone let me to Augmentation and not the next irreversible sh**…
Are you still on the Pregnenolone and SSRI? You should wean off those before the Restex. Your light switch was the SSRI most likely which is even worse than the Pregnenolone. It’s a frickin epidemic we see everyday. Someone goes on an SSRI, develops RLS and then because the connection isn’t made, the person is prescribed a dopamine agonist only to eventually wind up in augmentation hell. Stopping the SSRI should alleviate some of the symptoms and your receptors are no worse from the SSRI, only the Restex.
As far as the fasculations and fatigue go, you should think about having your thyroid checked. Those are common symptoms of a disordered thyroid
I stopped taking the SSRI and Pregnenolone within the first weeks with RLS symptoms in 2018 and thyroid blood values are ok. Restex is up to 125mg per day, but I will try to decrease that - which will be even more difficult with the new RLS symptoms in arms and body now…
Increasing ones ferritin to 100 or more only helps 60% of people with RLS so no, more brain iron wouldn't lead to a fast cure for all of us. And no Levodopa didn't block your bodies ability to cure the symptoms by itself as you had them before you started it. There are many presupposing factors for RLS. For example genetics is one of them. By the way SSRI's and Pregnenolone don't cause RLS nor lead to augmentation, they only make RLS worse. What is RAS?
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