Hello im 28y old and i m trying 2 weeks every 2. days use iron bisglycinate 40mg + vit C before i go sleep, for now whitout help in rls. In blood test before suplementations i had serum ferittin 82ug/l. If this dont help my last chance is infusion of iron.I have 2 questions:
Is someone there, who find help in suplementation iron and while rls have too someone of the parents or grandparents?
Is possible to using some drugs whitout increasing quantity which can help to sleep?
My dad had too rls, but my symptons are strong. I have symptones only at night from 9.00pm to 3-4 am. Symptons in legs go away after i move with legs and come back after 30 seconds. But symptoms in arms dont go away if i moving with arms and that is very bad feeling :(.
I try compresion socks, bandages, magnesium, hot bath, meditation, levodopa, gabapentin, pregabalin and this is not working for me.
I used ropinirole in 3 month, this is worked for me but i stopped it in 4mg for augmentation.
Coffeine, alcohol, physical activity getting much worse my symptons
Sorry for my english.
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laserr147
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Sorry to hear that you already have such strong RLS at such a young age. Do you have a knowledgeable doctor? Who is also willing to listen to you and discuss with you about your treatment?
Taking iron, it usually takes quite a while before levels increase significantly. Also, some people benefit from taking iron every day. The research on which the once every other recommendation is based showed no difference in build up time of iron levels between daily and once every other day. As iron can be hard on the intestines, usually people opt for the once every other day, but it is not 'better'.
I really hope raising your iron helps. Given your previous medications your RLS is refractory and foe medicines only opioids and maybe dipyridamole remain. The latter is not yet widely tested. Some people report good results, but it carries its own risks. Check the Mayo Clinic Proceedings paper from 2021 and discuss with your doctor. But I really hope the iron will work for you.
Yes one can take iron every day but it has to be taken at the same time so it is 24 hours apart since hepcidin is released once it is taken which prevents iron from being absorbed for 24 hours. That is another reason for the once every other day since people don't always take it at the same time.
I understand the reasoning, but I don't think it is that strict Sue. Substance dynamics in our bodies are generally very complicated and (therefor) non-linear. There is still no good understanding what limits or enhances brain iron, most iron dynamics studies focus on general iron status. I really wish some iron dynamics expert would look into it.
Trying iron for 2 weeks won't help much. It can take several months for it to improve your ferritin. Ask for a new full panel iron test after 3 months. Take your iron 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 or at least take it in the morning if you take your iron at night. 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.
Once you find a medicine that works for you at the correct dose you shouldn't have to increase it for a number of years. This is true of drugs for RLS except of course DAs and for insomnia you should never have to increase it. I take Lunesta for sleep and it works very well.
How much gabapentin and how much pregabalin were you taking? Since you have strong symptoms you may not have been taking enough.
You know some of this so forgive me from repeating it, but if others are reading this they may not know it but 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, eating late at night, estrogen including HRT, 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, 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, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
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.
One can take iron every day but it has to be taken at the same time so it is 24 hours apart since hepcidin is released once it is taken which prevents iron from being absorbed for 24 hours.
Thanks for tips, i too using vitamin D for reduction hepcidin and i will suplementation iron a few monts and a will see. I want studuy about kratom and buy it, is legal in my country.
Doctor only ask me what drugs want try for next. Any local doctor dont know much about rls so this website is good source of information for me.
I used pregabalin 75mg and gabapentin 300mg. I using it only one week. First night was without symptons, but next nights was much worse than before use. I was sleeping only 1 hour at night that week. Symptons was stronger and i had that week sleep paralysis multiple times. After i stop using pregabalin one other week i cant sleep more than 1 hour. Gabapentin have simmilar effect for me.
Good for my symptons was tramadol and benzodiazepines, but i dont want using it for now for riskind addiction.
Now if i need wake up to work too early i m tired. But if i have free day i go sleep 9pm , symptons ends in 3-4 am and i can sleep without symptons from 4am to 8am and i m not tired. In free day i can get 1 hour deep sleep with 2h REM and some light sleep.
In future if i will sleep less than 2 hours i will must using opioids and benzos if nothing else dont help.
Laserr, are you taking any antidepressants or antipsychotics or melatonin? These will make the symptoms of RLS very bad. ONE night please try taking 60mg of the ferrous bisglycinate on an EMPTY stomach about an hour before bed. I do this and it completely gets rid of the RLS in one hour for one night so I must repeat every night. Good luck!
I had "growing pains" as a child, 10 years old or so. I was treated for iron deficient anemia (I don't remember with what, but probably iron supplement). Fast forward to my late 60s - severe RLS and a Ferritin level of 49 - yes, even in my arms. Many months before I even knew just what it was. Bottom line - just taking Ferrous Bisglycinate for a week cut into the severe RLS. Ferritin went to 105 in 3 months - daily supplement, mid morning empty stomach, then every other day, then 3x week, then just once a week. Today - I don't take it at all. Still many sleep issues but no severe RLS.
I am so sorry, but I have never used Reponerol. My RFS started when I was pregnant with my first child and had low iron. Ever since then for the last 45 years I have had it. I go through Kratom Country and buy red vein kratom. I order 4 ounces of the powder at a time. I have a manual capsule filler that I got from Amazon and fill the empty capsules #00 also from AMAZON. I take 3 g at night. This company sells nothing but kratom hasis gone through five testings to make sure it is pure. I take 3 g of red vein kratom about two hours before I go to bed. I am sleepy by that time so I can go right to sleep or read for a while and then go to sleep without any problem. This has worked for me 98% of the time for the past two years. It is legal to buy in the United States. I don’t know what country you are from, but I would check it out. That is the only thing I have had to help me. Do not get green vein or white vein, those are for energy. Red vein is for calmness and sleep. Kratom Country has sales and coupons often. I wish you luck my friend.
I am 70 and have been suffering with RLS for 15 years. I'm currently on Gabapentin which works for me , better than Ropinirole or Pramipexole. Occasionally if I've had a drink my arms and legs start going at night and I have been prescribed Co-codamol by my GP which works like magic. Over the counter tablets have 5 Mg of codeine, whereas mine have 15 Mg . I take two and always go out like a light and sleep through until morning. The downside is that they an Opioid and are addictive so can only be taken when really necessary. This a risk but one that I consider well worth taking as it has changed my life. I may get some negative feedback for suggesting this but at my time of life I will do anything for a good nights sleep. Good luck.
People who have RLS and take low dose opioids do not become addictive. They can have withdrawal symptoms if they come off them. So enjoy your co-codamol.
I read, that for someone is bad sugar or carbohydratea. For me help for a while when i wake up for rls and i eat some sweet bars, maybe because is stimulated dopamine.
Your question: Is someone there, who find help in suplementation iron and while rls have too someone of the parents or grandparents?
Because there is a family history of RLS, it doesn't mean that iron therapy won't work.
Someone on this forum posted that his daughter had success with an iron infusion or iron supplements. (Both father and daughter have RLS).
Also, do you have periodic limb movement disorder (PLMD)?
I have PLMD and like you, i have my best sleep in the later morning eg. from 6am onwards. I have tried to structure my life around this, so that i don't have to get up too early. It's not easy with work and getting children to school, but it really does help.
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