I have had RLS for over 30 years but it really started impacting my life only a few years ago. Recently, I have been having pretty severe leg cramping waking me during the rare moments when I am in deep sleep. Does anyone know if this is related to the RLS? I am in the process of finding a new doctor since mine does not seem to care much and will not even include a serum ferritin test. She is more concerned with my other health issues (diabetes with metabolic syndrome, heart issues, etc) and dismisses the RLS. I currently taking .25 pramaxapole 2X per day but have to go off and on due to augmentation.
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Hoffie
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I don't know that night cramps are related to RLS, but there's a high coincidence of people with one having the other. I had night cramps before I had (noticeable) RLS. In my case, the night cramps were worse according how much walking I did on how little protein.
If you get one, the only thing to do is stand on the affected leg(s) – which kind of comes naturally, I guess! As far as nutrition is concerned, you should check your electrolytes are in balance: calcium, magnesium, potassium. Do also check you are getting enough protein: no one should try to live on less than about 40g of it per day; above 80g you should be under medical supervision. Check that your oil/fat intake (consider butter or olive oil besides the essential fatty acid containing oils) and iron is fully enough for myelin production.
Finally, it's often possible to avoid a cramp by not moving at all and then tipping your toes very gently upwards when you wake, rather than stretching out, as you might perhaps be otherwise inclined to do.
Night cramps and RLS are both different conditions, RLS is neurological, cramps are muscles.
Interesting that you mention you are on pramipexole and that you were augmenting.
I went through augmentation on Ropinirole last year and would often have to jump out of bed in agony with severe cramps in my feet and toes ( I was asleep at the time).
I went through withdrawal and have been off ropinirole ( same med as prami) for a year and I haven't had a single foot/toe/leg cramp since.
I think the cramps are definitely related to augmentation on a dopamine agonist. If you slowly get off the Pramipexole and onto another med, I'll bet money that your cramps stop.
I have only been back on the pramipexole a short time. I went off it for almost a year and the oxycodone was working great but doctor says no more refills which equates to no more sleep. So maybe I am already augmenting? I also tried ropinirole but it did nothing for me. The weird thing about these cramps is after the initial spasms the pain continues throughout the entire next day. I think I am going to try a sleep clinic, getting to the end of my rope. Thanks for the advice.
Yes, I am in USA in the Northeast. I was taking Oxycodone 5mg. At first the RX was 120 tablets per month and instruction was to take 1 every 6 hours as needed. So I started off with one in the evening about an hour before bed and if it was a bad night I would take another tablet as close to the 6 hour mark as possible. On really, really bad days I would sometimes take one around 3-4PM (I am semi-retired and at home) due to severe foot pain and what I call "legs in the air".
My doctor recently yelled at me for taking the 3rd tablet. Then at the next visit she withheld RX and told me to go cold turkey, which I did not do. I had enough stashed away to wean off over a one week period.
I'm on carbo dopa and am expecting augmentation any day. Don't know what to take after that. I was wondering what meds you're on. Seems like I worry about my rls when I have much more severe conditions. It's because it impacts my life so much. Do you have any suggestions re meds?
Are you on carbo dopa for Parkinsons? If so, I'm not sure there are alternative Parkinson's meds.
If you're on it just because you have RLS, there are lots of other meds available. First, if you haven't started augmenting, don't panic yet. Keep the dose at the lowest possible and don't increase it if symptoms get worse. At that stage, you can plan to get off it by reducing slowly with the help of a strong pain killer.
Other meds used for RLS include Gabapentin,pregabalin,codeine, tramadol or opioids.
I'm on it for RLS. I've taken, am taking, gabapentin, lyrica, mirapex and requip. I'm in the states and they sure do not like to prescribe opiods here. It's one day at a time here. I just read that augmentation occurs rapidly with carbo dopa and want to get a plan in place. Thank you for your response. It's encouraging.
I hope you are not on requip and mirapex now. That would be 3 dopamine agonists at the same time.
If you stopped requip/mirapex because they were no longer working, or you augmented on them, then that is a warning sign.
Going on another dopamine agonist like carbo dopa ( which is the strongest) too soon after stopping requip/mirapex means you are more likely to augment again.
Do not increase the dose.
If you are on Lyrica now, that would be a good replacement as studies have shown it can be as effective for RLS as mirapex.
Strart looking for a another physician who would be more familiar with RLS and understands about opioid use and benefits.
Dr Buchfuhrer at the Californian RLS site recommends this and explains that a lot of US physicians are not comfortable with opioids but that they are a very useful drug for severe, refractory RLS.
I was on requip and mirapex at different times but they stopped working. I know I'll be augmenting soon so was looking for a different med to take. I do need another neurologist. Here in the states if you mention wanting an opiate to a doctor they just shut down. I think our med. profession is walking on egg shells about opiates. I guess they're afraid of an audit. It's sad though. I think in matters of disease all options should be open. Thank you for being here. I sure appreciate being able to ask questions and getting responses to them.
It is very sad that US doctors are under such constraints re Opioids. Opioids are a lot better than the dopamine agonists and withdrawal from DA's is a lot worse than withdrawal from opioids.
Be sure you're taking a lot of magnesium - 800-1,000mg day with food - if your digestion can handle it (magnesium can make your bowels loose). If I feel like a cramp is coming, I stretch the muscles at the back of my legs as far as I can, pointing my toes toward the front of the leg - the shin. This works to avoid cramps and helps a lot if a cramp has already started. Good luck!
Oh, and get your doctor to send you to a specialist - she's not taking your RLS seriously enough.
Some time back a doctor was talking about a condition I had. I can't remember what but what I do remember is that I said that my rls was much more of a problem and he replied , "As a doctor rls is not an issue but the condition(whatever it was ) is.
Do you drink plenty of water during the day? This might help...
I too have appalling night cramps in my feet, toes and legs. Although I've had RLS for over 40 years, these cramps only began about two years ago. I have to position my feet before getting into bed because that's when it starts, and any twisting of my foot or feet will start it. I often have to get up even before I'm properly in bed.
I've taken advice from this site and have a small glass of Tonic water (for the quinine) before bed but it doesn't help. I now also take Magnesium Malate and vit B12 but nothing seems to relieve it. I also ate a banana every day until I grew sick of them.
The only thing that I think helps (it's hard to be sure because it varies so much - if I'm careful to be still I can often go through a night without it. Stretching in bed is a no-no) is if, through the evening, I exercise my feet, twisting them back and forth, up and down. This produces cramp of course, but I continue through the pain, and stop for a while. Then I do it all again, several times. I think this may 'loosen' the muscles somewhat. Then I do calf-stretching exercises before going to bed. I think this stretching this may be helping but as I say, I can't be 100% sure because of how it varies.
Wow, it sounds like we are suffering from similar symptoms. It is really frustrating that the doctors do not take this condition seriously. I only slept 35 minutes last night. And I knew beforehand it was going to be really bad because my evening symptoms were severe. I think it has been 4 days now with little or no sleep. I also am eating bananas, taking magnesium baths, adjusting my diet but being diabetic I have to eat sensibly. I did notice something last week, I at fresh spinach more than usual and my RLS was pretty good. I grocery shopped today and purchased more fresh spinach. I am hoping it works again. I know I move around a lot in my sleep; I don't know how you can will yourself to stay still!!! I have been practicing yoga for about 25 years so stretching is something I do frequently. I don't think it makes any difference for me.
Some interesting things learned at the AGM conference that might help are:
1. We had a workshop that focused on exercise as a means of alleviating symptoms. The speaker of this workshop said to focus on anaerobic exercise rather than aerobic. While aerobic is good for overall health, it is the anaerobic that we need to increase dopamine levels. Anaerobic builds muscles, which in turn increases our dopamine levels. By increasing our muscle mass not only are we increasing these levels, but we are helping ourselves as we age since muscle mass decreases with age. This workshop's leader said he would put up pictures of anaerobic exercises on this site. I don't think he has yet, but hopefully they will appear soon.
(Can someone please help us find these if they are indeed up? Thanks.)
2. Another workshop focused on lifestyle factos involved in RLS. The speaker of this workshop had us name our triggers. Anticipation of an attack was one of them. You said that you knew it was going to be a bad night because your evening symptoms were severe. This is anticipation. Easier said than done I know, but if you could somehow get away from the anticipation aspect it might help. (I, and no doubt everyone else, needs to work on this one as well.)
Thank you, and yes, I am sure when I am very sleep deprived, the anxiety of it all takes over and symptoms actually do become worse. It is something I have to work on as well.
yes, that is why I mentioned it. I asked my doctor for the serum ferritin test, but it was not ordered. I am seeing my neurologist in October and will discuss with him.
Are you aware of the research they've done at Johns Hopkins? Especially promising for some people is the research they've performed on iron and RLS. You could prepare for your meeting with the neurologist by studying up on this. Here's a link:
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