hi to all,
I am interested in hearing others journey with restless leg syndrome. What I have is quite severe and I don’t know how it compares with others and what treatment methods others have used that either work and those that don’t work. It’s a very debilitating condition that has caused many many nights of wandering the house. and going to work without sleep. I just want to come in and introduce myself.
Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want 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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If 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. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 like therapulse, 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.
Hi Sue,
A lot of information . I really appreciate it and an answer to your question on the ferritin level is I did have some blood test done back in December. I believe, and at that time the ferritin level was 20 and also was the saturation level . Snce then I have had an iron infusion. My ferritin level last time they checked was 527. I was feeling good however, they did not measure the saturation level at that time so next time I see my physician, I will be asking her if she can repeat it. One of the test that they run is not covered by Medicare which I use in the United States , so I have to be careful. The problem is even with the ferritin level at 527, I was still suffering the effects of restless legs. I do take the generic to Mirapex. I was taking three pills per night. I forgot what the dosage amount per pill is. I was also taking Wellbutrin for depression, 425 mg per day, but that wasn’t intended for the restless legs. It seemed to help though.. My doctor has switched me over to gabapentin and we are weaning me off of the Mirapex and onto the gabapentin. The problem is I am down to two of the mirapex and four of the gabapentin at the 300 mg per pill. I try to go down to one of the Mirapex and when I do that I don’t sleep. I am newly retired so I could probably try it again. I was working before when I tried it, and could not afford not to be able to sleep. I have tried some of the other items you listed, but have not tried keeping a food diary and relating it to my restless legs. That is something I will do. I have taken showers. I have walked the house. I have massaged my legs I have done everything I can think of to help relieve the symptoms, but I still have them. I do notice I need to take my medication early in the evening for the most part , because if I don’t then it’s too late and I’m suffering the symptoms even with the medication. The Mirapex. medication has started not being as effective as it used to be, but I have been on it for years. so that is one reason the doctor is weaning me off. The other had to do with some other problems, that were considered side effects that I was unaware of for a number of years; , for example, excessive shopping i gambling. . I did not realize it was related to the medication in someway, so I am working hard on getting off of the Mirapex.
I have taken a couple of supplements I believe I took B12 and D3. I was very low on the D3 levels, and neither one seem to help at all. I also was struggling with my levels for thyroid, the TSH level went up to 19 and should be between .03 and five. So my doctor had me go off of all supplements for a while until we could get things straightened out. Stress has also been a major factor in my life and one thing I have noticed since it’s only been a couple of weeks since I’ve retired , is that I actually have been sleeping better and not suffering the symptoms. So I wonder if maybe that was a major cause in my life. I’m going to keep an eye on it and see if it continues and try to wean down to nothing on the Mirapex, I also recently joined the gym to help me and my weight loss journey. Meditation is my next adventure to try. I have dealt with restless legs since I was a young teenager, but didn’t know what it was for years. I tried to seek help, but the doctors didn’t know anything about what I was dealing with the doctor. I have now seems to understand and has other doctors that she is in contact with that can also help if she doesn’t have an answer which makes me feel like there’s hope somewhere , I am open to any other suggestions you may have and I am printing what you wrote so I can go through it more carefully. There is so much good information that you have provided. Thank you.
Rosalea
Mirapex is the reason your RLS is so severe. You've had the iron infusion, which will really help once you're off Mirapex. Mirapex worsens the disease and is no longer first line treatment.
Reduce by half a 0.088 pill every 2 weeks. You WILL experience severe RLS and no sleep throughout the withdrawal process. That is normal. Stick with the withdrawal.
Once off Mirapex completely, the gabapentin you are taking will start to help and your RLS should settle around 4 weeks after the last dose of Mirapex.
Stress definitely can make RLS worse.
To expand on what Joolsg said to come off Mirapex reduce by .half of a .125 tablet (.088 tablet) 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
If that is still too much to reduce by, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon for $11 and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
The gabapentin won't help much until you are off the Mirapex and your symptoms have settled. Then you can increase it as I mentioned above.
Some interesting points in your history here. I also always had low iron and had restless legs from childhood. For me the main cause was most probably gluten intolerance as I no longer have restless legs (and it resolved long before the iron improved), but I also use magnesium and I suspect that is involved too. The compulsive/impulsive behaviour could be connected - any dopamine imbalance may affect this, and for some it is related to an expressed common genetic polymorphism on an enyme called COMT. Either too slow or too fast processing of that enzyme can throw the neurotransmitter metabolism out of 'normal'. Mine runs slow, and COMT is magnesium-dependent - adding magnesium helped me more than I would have expected. Magnesium is also very good for stress. Best wishes
I see you listed mirapex on your profile. Are you still taking this? If so how much?
When you start taking your thyroid medicines again be sure to time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium
DAs like mirapex inhibit TSH secretion so brings down thyroid hormones.
Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up.
Individuals with hypothyroidism may have prolonged and exaggerated responses to opioids.
Is hypothyroidism an underactive thyroid? so the TSH would be low? I ask as these comments had me sit up a little smarter as I have an underactive thyroid. I was diagnosed with an underactive thyroid about four years ago, some 10 years after starting Pramipexole....so not only is it now causing augmentation, it could have caused the low TSH....well that truly sucks. That is a kicker for sure.
Yes hypothyroidism is an underactive thyroid but the TSH would be high.
so iven I have an underactive thyroid I should also be getting my TSH levels monitored more frequently than 6 months or so while I go through this process? My TSH levels are at 8 I believe and this was what they wanted to reach as they were lower before. Any suggested references to read up on this aspect of Mirapex? Thank you SueJohnson, as this is important for me to know about and be watchful of.
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