I am a life-long RLS sufferer and chronic insomniac and have been on opoids for about 14 years. I've posted before about this and am still trying to get a blood test.
On advice from someone here I've been taking magnesium - first citrate, then malate, for several months. Unfortunately this hasn't helped. It's now just after 7am and this is the third time I've been up tonight, first at 2.45, then 3.15, then around 6.30. With vicious cramp, first time in my feet, then with extreme, cry-out-loud pain in my left leg calf muscles. Could the magnesium be causing this? Should I be taking potassium at the same time?
I feel so wretched I'm crying with weariness and rage. I seriously need a holiday, we haven't had one in years because of my nocturnal troubles leaving me too exhausted to do anything or go anywhere. Am so tired of my life.
Lorrinet
Written by
lorrinet
To view profiles and participate in discussions please or .
I've had full-body RLS for over 40 years, taken various drugs which worked for a while then stopped, including Cannabis. For 14 years I've been on Dihydrocodeine which has been marvellous but is now not working so well. I know from info at John Hopkins that this shouldn't be happening, so obviously something in me has changed. I' don't want to take the Ropinerol I've been given so am continuing with Dihydrocodeine for now. My GP refused me a blood test because I had one 12 years ago and all was fine (!). I'm seeing a different GP (waited five weeks) on Wednesday but don't have much hope. I'll print out some info from John Hopkins about serum ferratin, see if she'll listen.
I was feeling very low and exhausted when I posted around 6 this morning and so fed up with my life. I am also a chronic insomniac, so it's a double-whammy. I have osteoarthritis too, and have had one total knee replacement about 10 years ago and the other leg is on the way out. We'd love to have a holiday but it's pointless; the last one was six years ago and we came home early because I was zombified with exhaustion. We've had separate bedrooms for years so that he at least can get some rest. It's hard on a marriage.
In more recent times I've developed this shockingly painful night cramp, along with circulation problems in my legs; my ankles are hugely swollen from the afternoon onwards, can't get shoes on. I take a dispersible aspirin every day but stopped the statins because it was interfering with the RLS medication. I don't know if the cramps are anything to do with it. Magnesium has not helped.
I hate to be a moaner, Madlegs, but I've just about had enough. My children are grown now and I've written them letters just in case.
That's really tough , lorrinet - so hard to just keep your head.
There was a documentary on TV (Irish) a while back that rings bells. This was concerned with effects from longterm codeine use and described your symptoms very closely.
You could try googling that or talk to your Dr when you get to them.
I hope you get some relief somehow.
Do you have access to shortacting sleep pills such as Ambien- just to get the odd nights sleep.
I'm allowed 10 Zopiclone per month for insomnia. I used to have 16, which was better as I could save one or two so we could go away occasionally. But then I got Shingles - which three separate doctors failed to diagnose. I was in such pain 24/7, and couldn't bear even a bed-sheet to touch my skin, so I rang the GP and asked for a temporary full-month, 28 pack of Zopiclone so I could sleep every night for a while, but she refused and gave me the usual lecture - so I ended up begging her in tears until she gave in. The following month my Zopiclone had been cut to 10 and that's how it remains (I spoke on the phone to the medical herbalist I see occasionally and straight away he said "You've got Singles". And he was right).
Sleeping pills are not the whole answer as I still wake up needing another dose of RLS meds and need to walk around for 20 minutes, but they really do help. But never have I once found a GP who has the slightest sympathy or understanding for insomnia; "oh, she's just after drugs" is the attitude. They have no idea.
My long-awaited appointment with a new GP is next week. 10 minutes is not long enough to discuss all this so I'm going to write it all down and give it to her to read. I hope she'll agree to a ferum seratin test. I'll keep you posted. It's 5.45 am now so I'm going to try my bed again! At least it's summer. In the winter it's freezing being up half the night!
It helps because tonic water contains quinine. You must, however, check that quinine doesn't react with your current meds
Hi lorrinet, I too suffer with whole body RLS and during a particularly difficult few months a year or two back I was pushed very close to the edge - the only reason I am here is because of my family - the ONLY reason! I spent a more than enough nights rolling in agony with a plan rattling around my head.
This is a terrible affliction and it is very limiting and distressing not to mention the pain. When I am at my worst I have to pee outside, well I can pee inside but more goes around the toilet than in it if standing and sitting I do plenty of bouncing/spasaming too
To add insult to injury on quiet nights I still have insomnia and if I take a sleeping pill it now seems to make things worse as I am awake and even more tired, (they used to always work and I only take them now and again maybe 1 a week). I've had insomnia for the past 30 years or so with sporadic episodes of normal sleeping! Any sleeping pills used too consecutively quickly reduce in efficacy - so much so that a solid week or two of pills and the the major thing making people sleep is their belief the pills will work. I know one person on Temazepam 40mg for 10+ years who was taken off them despite threatening to kill himself as they'd never sleep - even though there is no way they would be working he was adamant they were the only thing that would get him a few hours sleep; within a fortnight he was sleeping properly!
Anyway I digress. People underestimate the effects of all the pain, sleep deprivation and drugs on us but we mustn't. During the day take whatever sleep you can when however you can. I don't know if you work but if you do and you can - sleep during your breaks. I used to do that and if things were tight I'd go to the loo and take a quick 10/15 minute nap my constipation was terrible ;). There are so many facets to sleep not mention the stress of RLS it can be difficult getting things to a reasonable level.
Regarding the cramps, here is a wee bit I googled:
Mineral depletion. Too little potassium, calcium or magnesium in your diet can contribute to leg cramps.
There can be a fine balance and one mineral can effect the other and then absorption rates can be effected - there is a mass of learning. There are some on here much more knowledgeable about cramps than me so hopefully they will chime in.
Many use tonic water as it contains quinine which is known to help cramps, although I am not sure dose wise with the water but you can get quinine tablets - there can be life threatening side effects so don't rush off and get it without talking to a Dr.
Many of us on here get relief from Iron, gentle Iron to be specific taken on an empty stomach in the evening - I for one although on other drugs too find it helpful. Again be careful as too much Iron can be harmful too.
Cannabis can be great - if I can get it I get it as it helps me a lot, not just with the pain, insomnia, RLS and nausea but I actually feel energised after taking it and can function much better, (quite different from the stereotypical slack stoner). What I found is cannabis stops stoning very quickly and you really need to cycle the strains. I try and get as high a THC one as possible as I feel it helps me better. I've tried REALLY high CBD ones but for me they didn't work so good, (I knew a guy who selectively bred a very high CBD one much much higher than any usual one).
There is Kratom too which some of us on here use/have used and gotten great relief from definitely worth a look if you haven't come across it already.
I would advise looking into mindfulness and meditation as they can help. I use my sons drums - it helps me focus away from my bodily pain and the movement can ease my RLS, (having to focus on moving 4 limbs independently can be draining mentally for me but the relief from the RLS can be pretty good). In the mental health field distraction has long been utilised to good effect.
It is always wise to keep in mind that even though we are all suffering now, we might not be suffering forever. In the 80's AIDS was a death sentence, now people are living quite normal lives with it. I wont give up hope that a cure will be found or I will find a cure of my own, (I have tried so many legal and illegal drugs to treat this but I haven't tried them all).
Re-frame the suffering - convince yourself this is a learning process. Your suffering is a teacher. It can take a while to do it but I tell myself my suffering allows me to help others on here and to understand the suffering of others and believe it or not it does help. I try and post here as much as I can and feel damn good for it.
I hope this has been of some help, if nothing else getting a good moan and knowing there are others in the same position as yourself can be enough to bolster us up again. Please take very good care and talk about how you feel. If those at home don't understand then we will; feel free to PM me if you need to chat to someone.
I get (very painful) night cramps if I don't get enough protein, and the more exercise I do, the more protein I need.
I don't doubt it's a good idea to have electrolytes in the correct balance too, and, in my case, enough fat/oil to go with the protein, and enough carbohydrate so that my system doesn't break the protein down for energy.
Fats like butter and olive oil (as well as protein and iron) also help make myelin which covers the nerve fibres, and lack of myelin can result in cramps.
I've read doctors tend not to prescribe quinine nowadays, preferring baclofen. Interesting, at least I find it so, baclofen attaches to the same neuroreceptor, but at a different point, to zopiclone and the benzodiazepines (and barbiturates).
Before I found the protein link, the cramps were bad enough to have me roll out of bed onto the floor in agony. Standing on the leg with the cramp is, of course, the best way of stopping it, even though it feels as if sinews are being torn apart, and a pain, as if there was some trauma, may well last for 24 hours.
In my experience, and may other people's, a cramp occurs when going to stretch or just extend the leg. I understand it's a matter of the muscle going into spasm as the calf muscle becomes more relaxed. Often a cramp can be prevented by tipping the toes upwards rather than downwards and outwards so that the calf muscle is extended. I don't know if that's something you've already discovered.
A temperature gradient across a muscle is something which increases the likelihood of a cramp. Hence swimming in cold water ... or even sleeping in a bedroom which isn't as warm as it might be.
I have asked about my protein/cramp problem in sports discussion forums, and some have said that too much protein gives them cramps.
I also read on sport related pages that the best protein for repairing muscle damage, including that that occurs inevitably when we exercise, is that which has more branched-chain amino acids (BCAA's). I've not so far bought such a supplement, but find I need at least some protein like eggs or meat besides whey powder (which I read is inflammatory) or cheese etc.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
my constipation was terrible ;). There are so many facets to sleep not mention the stress of RLS it can be difficult getting things to a reasonable level.
Magnesium for RLS
Big thank you
A new member hoping to learn from others
I just need to vent!!!
Trialling magnesium
