Hello, nice to meet you! My name is Ariane, I am 39 years old, I am Brazilian and I have very severe RLS. My symptoms started when I was 7 years old, but everything got worse 7 years ago when I was pregnant with my first child. I have tried countless treatments, but I had augmentation with all of them after a short time of use. I have very strong symptoms during the day and all night. I sleep very badly and I hope to one day get out of this nightmare. I am currently being treated with methadone, but since I am very sensitive to the side effects I need to increase the dose very slowly and I have not noticed much improvement yet. I came here to meet other people who understand what I am going through and also to see success stories that give me hope of one day having a healthier life.
Very severe RLS seeking treatment - Restless Legs Syn...
Very severe RLS seeking treatment
Hi Ariane, are you taking an SSRI or birth control? Both of these can make the symptoms of RLS worse than they have to be.
Hello, nice to meet you! I haven't taken birth control pills for many years and I've never taken antidepressants. At the moment I only take methadone, blacofen, magnesium oxide, vitamin D and vitamin B6.
Ok, so you’re definitely pre-disposed to RLS and it was “manageable” until you got pregnant in 2017. Then it subsided somewhat after giving birth and worsened again with second pregnancy. Yet it sounds like it didn’t subside after giving birth??? Have any doctors checked your hormone levels? Are your periods normal? Do you have any other health conditions (no matter how minor) besides RLS?
I noticed you’re taking a lot of b12? Do you have pernicious anemia? How long have you supplemented with B12? Why isn’t your RLS calming down like after your first pregnancy? Kind of a rhetorical question.
Also, why do you need iron infusions every six months? You should probably tell us all the medications you take and all the health conditions you have.
Recent recommendations are that iron is only suitable for secondary RLS not primary RLS so it won't work for everyone. I have tried infusions myself but will look into.
I didn’t think they divided RLS into primary or secondary anymore? If low ferritin was a contributing factor to RLS then those with it should have RLS 24/7. It’s not about ferritin it’s about serum iron which plummets dramatically at night. Because the RLS brain is incapable of storing iron we rely very heavily on that serum iron. When it goes down at night we get RLS. And it doesn’t help that our brains’ free floating pool of dopamine also drops at night. If your dopamine receptors are really messed up then there’s a point of no return where neither taking iron or a DA will help. But yes, try the oral iron ONE night. Take around 50mg of ferrous bisglycinate on an empty stomach about two hours before bed. If your RLS isn’t greatly improved in 1.5 hours then you’re a non -responder and I would stop trying unless your iron stores are very low then it might be worth to continue taking it. See below:
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
Thanks a lot that is the first time I heard a good explanation for why it is a nighttime thing. I just read that someone was getting it 12 hours a day from augmentation, any idea how that matches with serum iron?
That’s the point of no return I was talking about above. Even though serum iron is plentiful in humans by day(unless you’re anemic), and iron is the grease and glue that keeps our dopamine receptors chugging along, if the train (aka the dopamine transport system) is so badly damaged, then even that plentiful amount of iron by day (or even taking some DA by day) will not be able to get the train moving. Meaning, there just isn’t enough dopamine being hurled from the brain, down the spine and to the peripheral nervous system, where it quiets the arms and legs, to get rid of the RLS symptoms - by day or night. At that point, you need a somewhat strong opiate to put yourself in an altered state of consciousness.
I try to keep my ferritin and iron levels high, so I have them checked every 6 months and, depending on the need, I use infusions to replace them. But honestly, I don't see any improvement with the infusions. My iron levels have been high for a while now, and I still have a lot of symptoms every day.
Welcome to the forum Ariane, if you're not seeing any improvements with the iron infusions, i'm curious as to why you still have them. I've had several iron infusions (because of low iron and also to see whether it improves my RLS/PLMD) however when i've queried their safety with doctors/haematologists, their advice has always been that infusions are recommended if there is a medical need, but not otherwise.
Welcome Ariane,Could you tell us what medications you have tried in the past for RLS and list ALL the medications you are taking currently?
It will help other members as many medications and supplements can trigger RLS.
Presumably you are having iron infusions because your serum ferritin is low. However, if your serum ferritin is now above 200ųg/L then you do not need to keep having more infusions. Especially if they haven't made a big difference to your symptoms.
If you are highly sensitive to methadone, what side effects are you getting?
Hello, nice to meet you! I currently take daily: methadone (3mg per day, but we are still adjusting this dose), blacofen (10mg per day), magnesium oxide and vitamin B6. Once a week I take 10,000 IU of vitamin D. Once a week I take 5000 cytoneurim. That is all I take.
I had a test at the end of June and my iron was 80 and my ferritin was 387. I honestly don't notice much difference when I take iron replacement therapy, but my neurologist likes to keep it above 200. So I have a check-up every 6 months.
The first time I took methadone I was 8 months pregnant. I took 5mg and was completely paralyzed in bed, I couldn't move or open my eyes. My husband was happy, thinking that I was finally able to sleep. But I wasn't sleeping, I was fully conscious, sweating cold, with a beating heart and completely trapped in that body that didn't respond to me. It was the worst experience of my life. Totally desperate. Little by little I managed to open my eyes and asked for help with great difficulty. Even in this terrible condition, my RLS attacked and I had to get up. My husband helped me so I could walk, it was horrible... I stayed in bed for 24 hours and could barely go to the bathroom by myself.
I was traumatized by the medication, but after a year my doctor (another one, not the same one who medicated me with 5mg) told me that he had studied my case in depth and that I have refractory RLS, with a strong tendency to augmentation and that the best alternative would be to take methadone, but this time to start with extremely low doses so that I wouldn't have so many side effects.
We started with 0.25mg in November 2023 and I really started to get better, very slowly, but it helped, at least I stopped having pain in my arms. Which I already think is great. We are slowly increasing the dose. The last time we changed the dose, it went up 1 mg at once and I felt very bad, for several days with a lot of nausea, dizziness, headache, migraines, constipation, heart palpitations, and a feeling of heaviness and lethargy that wouldn't go away. Now, after 15 days of this dose adjustment, I feel much better. But the symptoms are still very intense and persistent.
I suspect that I may be having augmentation with the blacofen... I don't know. But the idea of taking blacofen is to try to control the RLS without having to take a very high dose of methadone.
Nausea, palpitations and constipation are very common side effect of opioids.I took medical cannabis oil with 20% THC for 10 days. It stopped the severe nausea I experienced on Buprenorphine.
For the heart palpitations, I added 50mg pregabalin and 10mg of non sedating anti histamines. It doesn't stop the palpitations but it improves them substantially.
For the constipation I take 2 magnesium citrate pills every night and I eat cauliflower, broccoli and chia seeds.
They really help.
Welcome to the forum. You will find lots of help, support and understanding here.
Baclofen may help but a few people on the forum have said it made their RLS worse. It is certainly not a major treatment for RLS.
What is your ferritin?
As Joolsg asked, what side effects are you having with methadone as we may be able to help you with those.
Are you off the levodopa and if so for how long?
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Hello, nice to meet you! Wow! Thank you for so much information. I loved it 
I know this is a very specific disease and there are things that help some and not others. But the more we know about RLS, the more resources we have to find out what works for us. Thank you very much. I have already identified with several resources here that you mentioned that help, mainly hot baths, distractions, yoga, light and regular physical activity, avoiding sugar, among others.
My ferritin was 387 in June of this year.
I took levodopa for only 15 days in 2021, during the pregnancy of my second child and I stopped because I soon got augmentation.
As I described in the answer to Joolsg, I feel dizzy, nauseous, have headaches, extreme fatigue, body weakness, constipation. At first I was very scared, but I realized that after a few days the body adapts to the medication and we don't feel as many effects. Now I'm much better, ready to increase the dose! Just waiting for my neurologist's guidance. Because unfortunately, even increasing the dose I didn't feel any effect on the RLS symptoms 
I still have them during the day (towards the end of the day) and all night. The feeling is milder, but the agony wakes me up after less than an hour of sleep. And I need to get up and walk.
It is not surprising that the methadone is not helping much. The usual effective dose is 5 to 20 mg according to the Mayo Clinic Updated Algorithm on RLS.
I would stop the infusions. You can continue to check your ferritin every 6 months and if it goes below 200 take iron orally instead.
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. You can 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 tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
What was your experience with gabapentin and pregabalin?
Hi, I have RLS which keeps getting worse my GP gives me Tramadol which is effective but It is decreasing in effect and I need to increase the dose. The most effective treatment is Kratom (you can buy it online), unfortunately it is illegal in Australia but not in many other countries.
Hi Peter, Tramadol is the only opioid which causes augmentation. It sounds as if that's what's happening to you so maybe it's time to reduce and go off it. Talk to Sue Johnson or Joolsg and they will give you good advice.
I wear a Neupro patch, at night take 50mg Tramadol and 30mg Temazepam. I take iron twice a week, 325 mg. Cut out sugar.
It would be great if you would stop saying this as the last thing we want people on this forum to take is Neupro.
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