It is trial and error by yourself for the best treatment with a little help from your Dr and Consultant.
My routine is .
Madopor 4 times a day 100mg tablets 1 in the morning 1 at lunchtime 1 at teatime and 1 before bed .
Gabapentin 2or Consultan at 9pm and 2 at 11pm 300mg tablets.
paracetamol 2 at 8pm and 2 at 10 pm If I waken at 4-5am I take one 100mg tablet of Madopor and go back t sleep till 9pm then start again.
I also do leg exercise 3 times a day and upper body and arm exercises with 2 hand dumbbells 1.5 mg each or more if I feel like it better than sitting sleeping or watching TV. this really helps as I say it is trial and error nothing is 100 % with this curse but if you can keep it bearable or comfortable it is a blessing. if Drs or Consultants had R.L.S maybe they would understand what we go through. we can go to the moon, but we cannot cure a lot of diseases fingers crossed maybe one day. thought I would share this with you, I pray every night every one of you finds a way to have a peaceful life God bless you all.
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auldreekie18
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Some interesting coping methods there that may help someone else.. however the very nature of this disease is that no one thing helps everyone… the important thing is that you have found a way through that works for you & we can all be encouraged to find a routine in what works best for us..sharing definitely helps us to evaluate what works & what doesn’t & to try a new idea if relevant to our situation. Thanks for sharing & caring. I for one do appreciate your prayers too.
Well its certainly better than trying to keep still and doing nothing but fight the urge to move. I have had 24hr 3 days of RL, and utterly exhausted. I've had opioids, magnesium, showers, massage, shouting and crying at one point , pramipexole (maybe the culprit), paracetamol, water,all to no avail. No idea what has triggered this. Walking the dog every two hours, yes, during the night too. He doesn't mind as he has dementia bless him and is pacing behind me in the house. The fresh air is somewhat calming and at least I don't feel as crazy.
It sounds as if you have it bad too, but your coping routine is admirable. Sharing our pain is all we have at some point, so thanks for sharing yours.
It's the first time I have heard of Madapor, so no idea what it is, but if it helps ...Good luck my friend, and thanks so much for your prayers.
I am sorry you are also a sufferer of this insidious and largely unacknowledged condition. Of the drugs you mention I take gabapentin but the dose is 600mg three times a day. I know there is caution about being on it for a long time but I have had it for 10 years and I think it helps get me though the day, rather than the night. The other thing that helps me day or night, is a really hot bath, don’t know why but it seems to calm things diwn, not immediately but in about 20 minutes.
There is no problem being on gabapentin long time. Do you have symptoms during the day which is why you take it during the day, because most people just need it at night? You can certainly increase it at night as 600 mg at night is a low dose. Take it 1-2 hours before bedtime. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. The maximum dose is 3600 mg.
Also, have you had your ferritin tested? 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 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.
Also 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.
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