Started in my legs, went to my hips, now it's in my back and shoulders; it's not as easy to move the back as it is the legs! Flip flopin all night, not sure I can handle this getting any worse. I'm currently looking into high quantities of Potassium citrate and would like to try CBD oil; anyone had good results with either?
RLS moves: Started in my legs, went to... - Restless Legs Syn...
RLS moves
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midnightmadness
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Whoa! Firstly you need to be careful how much potassium citrate you take, it could upset your ph balance.
Then, this sounds like "augmentation " which happens as a consequence of taking RLS medication, particularly dopamine agonists.
What medication are you taking?
midnightmadness in reply to
I don't take anything yet, I'm still trying to get my Dr. to recognize the problem. We have been trying to figure out other heath concerns so I've been busy with that.... Now its time to work on the RLS. I'm only taking the recommended daily dose of Potassium right now.
in reply to midnightmadness
I'm a bit mystified by your symptoms. RLS generally is just that, i.e. affects the legs.
It spreading to other parts of the body, I believe, can happen as a consequence of taking some RLS medication for some time. In this case symptoms spread, occur earlier in the day and come on faster when you keep still.
This is known as augmentation.
My own experience is that originally I only had RLS in the evening and only in my legs. It was only after I had been prescribed a dopamine agonist and had been taking it for some years, that I got symptoms anywhere else.
If you've not actually been diagnosed with RLS then you can't really be sure that's what you have.
There are 5 criteria for diagnosing RLS. The first 4 are about the symptoms, the fifth is that OTHER alternative diagnoses have been eliminated as there are other conditions that mimic it.
It's best if RLS is diagnosed by a neurologist rather than a GP.
Mum007 in reply to
I have restless arms as well as legs and have never taken any rsl medication.
in reply to Mum007
Thanks, it can happen then. Still need to eliminate other conditions before assuming RLS though.
Raven123 in reply to
Google Periodic limb movement.
So does my husband. He has never taken anything and now is is totally restless, all day. arms, back, chest, abdomen area, hands and all...
in reply to OFgc
It's a matter of balancing the beneficial effects of medication against the unwanted side effects. It's never desirable or ideal to take any drug unnecessarily and without caution. However if your quality of life is severely restricted and a medication could help improve it more than possible side effects could worsen it, then on balance it might be better to take medication.
If your husband is already getting RLS all over, there is a possibility it isn't actually RLS and if it is RLS then it's NOT augmentation. He might actually benefit then from taking some medication.
It is partly a matter of how you perceive it. I know 2 people can have pain in the same place for the same reason and react completely different to it. Pain perception and pain behaviour are not synonymous. Similarly with RLS, different people will react to the symptoms differently. I have suffered augmentation for example, but for years I didn't even know it. I just accepted it. Some people become suicidal.
I've had RLS for at least 30 years, it's only when I was unable to get to sleep, at all, every night that I welcomed medication.
So I wonder if as your husband's RLS is as bad as it sounds, has he not considered medication?
Had it been definitely diagnosed?
OFgc in reply to
I think he is in denial. We are not talking about his condition. It has become noticeably worse over the last two years when I realized he is constantly moving and started to "watch him". I'm much beyond sick worried. But I don't know if to approach him or not. The few times I said something he shook me off. His legs also move as he sleeps to the point it bothers me very much. I really don't know what to do. I feel terrible about going to him and saying I think something is really wrong with your health. I believe he knows, how can he not? I see him struggling.
in reply to OFgc
How awful, I'm sorry to hear this.
The leg kicking when asleep, which he won't be aware of unless you tell him, is symptomatic of Periodic Limb Movement when Sleeping - PLMS. PLMS occurs in at least 80% of RLS sufferers, but rarely occurs on its own.
On the positive side then. it appears that he DOES have RLS and nothing worse.
RLS/PLMS are not serious conditions in themslves but can have serious consequences. The lack of "good quality" sleep is a particular issue, and not just for the sufferer!
It's a shame you don't feel you can talk to him about this. I appreciate that it can be difficult. If he's in denial maybe he thinks it might be something life threatening.
Perhaps if you printed out some simple information about RLS and PLMS and "accidentally" left it "lying around"
I'm not an expert in relationships, Aspergers is another cross I have to bear, but I think even in marriages, individuals are responsible for their own choices. So it's up to your husband to choose what he does about this.
Your responsibility is only to choose what to do about the effect it's having on you.
My first intimation that I had PLMS was when my first wife chose to wake me up in the middle of a cold winters night by taking the duvet off me and announcing she was going to sleep in the sofa as I was kicking her.
You have an advantage over me however, in that neither my wife nor me knew about PLMS and she thought I was kicking her deliberately.
OFgc in reply to
O my... I'm sorry.
Yes much more education / information out there today.
I wish I could talk to him. To take it off my chest and to get proactive about it. I am not a sit and do nothing kind of person. Sometimes I think that he is probably scared and worried for his life and health and don't want to worry me too. Maybe he thinks it's not so noticeable. It is very. I think maybe it's my role to open it up and offer him the information I'm gathering here and elsewhere for a long time. And let him out of his loneliness.
Lately, I'm sorry to say, I become very nervous and even embarrassed beside him. It's beyond terrible. As for his sleep, it doesn't keep him awake or wake him up (all the time), he is sleeping and his legs are moving/shaking. He is not kicking me, but he shakes the bed and that wakes me up and makes me agitated and frustrated as I keep my mouth shut. I sometimes do move to a different room saying he snores... (without taking his blanket 
).
in reply to OFgc
Although he's not actually waking up, he won't be getting sufficient deep sleep. That will have consequences and it will catch up with him at some time.
No pressure though, gather your information ready for an opportune moment.
OFgc in reply to
For sure his sleep is disrupted. I do feel pressure as his restless "behavior" gets more and more noticeable. Is there a chance one is not aware of all that?
Thanks you for your answers thus far. Don't feel obliged to go on with this conversation.
in reply to OFgc
If he has RLS, which it very much sounds as if he has. He will be fully aware of it when he's awake. Although not an actual pain, it is a most unsettling, horrible sensation. The urge to move is irresistible and may actually become involuntary movement. Twitching.
That aspect of RLS usually occurs most at the onset of sleep. So much so that it may prevent someone from getting to sleep at all.
The PLMS aspect usually occurs only when actually asleep. It consists of kicking and tends to recur about every 20 seconds.
If he's restless in other ways , although people can be a little restless in their sleep, he may actually be awake but hiding it. So yes, he may be aware of it.
The problem is that there is no test for RLS, it's diagnosed according to what the sufferer says their symptoms are. If someone says -
I have these creepy crawling sensations in my legs
I have an irresistible urge to move them
Moving relieves the feelings and urge
It happens mainly in the evening when I'm getting sleepy.
Then they will be diagnosed with RLS. If someone doesn't say anything, they can't be diagnosed.
I understand it's difficult for you, but it really is up to him.
OFgc in reply to
Thank you. I'm constantly worried. For 2 years now. As he is getting a growing amount (with repetitive different variations) of involuntary movements which by now look like nervous tics (which they kind of are) along with a lot of twitching. OMG... and of course there's that underlying fear that it's something worse.
His legs moved like crazy during sleep ever since I met him 25 years ago (again, for some reason I never talked about it with him...) and everything else just added up to these last 2 years where I see a dramatic turn for the worse.
Thank you for letting me have an outlet. I have no one I can talk to about this.
in reply to OFgc
It does get worse as time goes by. The first time I was aware of the problem was when my wife told me I was kicking her in the late 1980s. I wasn't that aware of the RLS sensations and urge to move. They only became apparent later. Funnily enough I believe the PLMS, kicking in my sleep has disappeared. Maybe that's because I don't sleep as much.
The RLS however got so bad that around 2007 I just wasn't managing to get to sleep. I saw my GP who referred me to a neurolgist. He examined me and asked me what my symptoms were and diagnosed Idiopathic RLS.
Idiopathic means there's no obvious cause.
The fact that your husband doesn't feel he can talk to you about it and you have never said about his legs in 25 years isn't good, but isn't unusual, I'd say.
I wouldn't want to assume anything about your relationship with your husband, but the wife I used to kick was my first wife and we didn't have the kind of relationship in which we talked to each other about things. Even though we were married 10 years and had 3 children, I always felt lonely.
I hope you don't mind me sharing this with you, but I once knew this man who had been diagnosed with terminal cancer. When the doctor told him he said don't tell my wife I don't think she can handle it. Meanwhile another doctor had seen his wife and told her that her husband had terminal cancer. She said, don't tell my husband, I don't think he can handle it. They had two children under 10,
I used to go to their house. It was awful. Terrible tense atmosphere. The children were very subdued and the man and his wife untalkative.
Then one day I went and it was totally different, it was relaxed, they were talking and even smiling, the kids were playing normally. They told me that they each discovered that the other one knew but weren't saying.
I am not even remotely suggesting your husband has such a condition, simply illustrating a point about communication.
It's a great shame for your husband but also consequently for you too. There are medications ro relieve RLS/PLMS and additionally, it mauy be that his RLS is secondary, rather than Idiopathic. It can arise for example due to anaemia or kidney problems. Treat these and the RLS will be treated.
I'm guessing that both you and your husband are afraid of something and that's preventing you from talking. Only you can identiofu whatb that is.
OFgc in reply to
I always say the communication is the hardest "subject" to learn and I wish they taught it at school. My husband is the "bunker" type of guy. He deals with his struggles and challenges on his own. He rarely tells me about things that happen in his work place. He has always been like that. When I was working (outside the house) I used to pour on him my daily experiences. It's a type of personality. Over the years I have learned to not burden him with my stuff and am dealing with most of it on my own or with my sister. We are not the "heavy" conversations type of couple. We don't have staff meetings (His sister has with her husband and we hate it). That's the way we are. Also I give him space to do his own things and he doesn't belittle me for not working for so long. I have tried to talk to him over these last 2 years and he would brush me off or ignore what I'm saying and wouldn't open up the discussion. I respect him for being our provider and for never complaining about anything so I shut up.
I feel he is either scared or in denial.
in reply to OFgc
That kind of relationship works for some people. I confess to being a bit like that myself. That's partly because I've spent a significant proportion of my life on my own and partly because I'm a bit autistic.
It was OK with my last wife until I retired really.
It isn't helping your current situation though. He might be afraid of something, but there's also something stopping you from opening a conversation about his health. I wonder what that is?
Me too. Full-body RLS from the start, over 45 years ago. I take opiates, thankfully, and have done for 17 years.
Is it just at night? If you didn't take your medication what would you look like to someone looking at you? (Sorry). For my husband it's been going on all day long, he is twitching and moving, shoulders are jumping, he is shaking his hands. Very weird looking and scary to watch might I add.
I'm usually fine during the day. It's when I rest it begins. Strangely, I've always been OK in the morning, which is why if I have to travel it's best to do it early. If I must travel after about 2pm (and therefore keep still), I take a medium dose of opiate and I'm fine.
Before I started the opiates my evenings progressed with me kicking my legs out violently, from a few twitches around 7pm to full-blown craziness when at last I got into bed, and throughout the night. My husband moved out of the room because I was in and out of bed, throwing my limbs against the wall, weeping, often hysterical, swearing, at times I thought it was affecting my mind. Sometimes I used to get him to pull hard on my legs and arms in turn, just for a few seconds of relief. I was quite bruised, and I sometimes wonder if the early problems with my knees (total knee replacement) come from the violent flinging out of my legs.
in reply to
RLS can go to other parts of the body. Its when other parts of the body get RLS that wasnt there before you were taking a dopamine med is a sign of augmentation.
in reply to
OK, thanks.
But as well as the other classic diagnostic crtiteria for RLS I believe a fifth one is now that all other possible neurological conditions that might mimic RLS are eliminated. If someone hasn't actually been diagnosed by a neurologist then it can't be definitely assumed that it is RLS.
I do take your point however, just because it occurs all over all day doesn't mean it isn't RLS.
in reply to
Yes there are mimics of RLS, the important part of the criteria is the urge to move a urge you cant resist, that will most likely will be RLS. And yes it needs to be properly diagnosed.
in reply to
Thanks again. Urge to move is the key criteria.
This depends on the subjective subjective experience and the ability to articulate it.
Since this poor chap is not talking, his poor wife hasn't got access to that criteria.
Us guys can be quite stubborn!
in reply to
Ohhh yes, they definately can be, and not just about RLS, most fella's are reluctant to see a doctor for anything.
That sounds dreadful. Check out the list of counter-indicated medications on the RLS uk website here: rls-uk.org/treatment to be sure you are not taking something that is making it worse such as amitryptiline, benedryl, an SSRI or such. It is worth considering diet also. Many people find a 'clean' diet helps. Wine, ice cream, sugar in excess, raising agents, monosodium glutamate and others have all been identified as triggers by sufferers. Many people find going to bed on a relatively empty stomach can help.
There are medications that can help but it is important to educate yourself fully before embarking on them as many GPs are woefully ignorant of the condition and of the potentially adverse impact of some of the treatment medications. In particular it is now considered important by RLS experts to try the anti-convulsant meds before trying a dopamine agonist but most GPs will prescribe a dopamine agonist such as pramipexole or ropinerole first. It is also important to maintain a very low dose if you do embark on a dopamine agonist.
Iron is important. It is not unusual for symptoms to worsen when iron levels drop. Every sufferer should have their serum ferritin tested and if it is less than 100 a supplement should be taken. It is important to get the actual figure for serum ferritin - not just that you are 'normal' as normal for the general population can be as low as 20 which is FAR too low for RLS sufferers. Again, many GPs are not aware of this. Raising iron levels results in improved symptoms for at least 50% of sufferers.
There are also many non-pharmaceutical suggestions suggested on this forum. They work for some and not for others. Hot baths, very cold water applied to the afflicted areas, magnesium taken as a supplement or a rub, a very diverting activity such as a computer game (TV, reading or paper puzzles are not sufficiently diverting), gentle yoga type stretches are all regularly suggested. More specific remedies work from some individuals and you will find loads of these cropping up.
I hope you find some relief.
I've been drinking smoothies packed with spinach to reduce inflammation so I should be getting lots of iron but I'm still rocking all night long! I do find sugar makes it worse, especially wine. Ibuprofen has no effect. I have tried magnesium before bed when it was in my legs and that seemed to help back then. I use to be able to flip around and sleep at the foot of my bed, got relief for some reason back then as well but not anymore. I've never tried any medication specific to RLS so I'm starting my research here among other places...I think food could play a big role.
There are loads of people on here who advocate a variety of restrictive diets. Fodmap, vegan etc. I have a feeling I read somewhere that the amount of iron absorbed from spinach is less than one might hope but I'm not a dietician. I would definitely get serum ferritin levels checked in any event.
Ibuprofen does not usually help. Solpadeine can be helpful - it's the codeine that's useful.
Good luck with your research.
Thank you! I stuff a blender full of spinach, almost a full large box, really pack it down, with walnuts and flaxseed and a banana; all have iron as well I'll get my serum ferritin levels checked. I just got blood checked for Lupus as I was presenting the rash on my face including many other symptoms it was negative; I hate that now if I ask for more blood work they will think I'm a hypochondriac..grrrrr! Have you all had MRI's as I did not even know until this week that it was a neurological issue?
I haven't had an MRI and I haven't heard of many others either. I'm not sure what would show up on an MRI.
"Iron-sensitive MRI techniques provide useful non-invasive approaches for the diagnosis and monitoring of a variety of diseases with associated changes in iron" Just read that.
But I did read the other day that RLS is thought to be connected to neurological issues. My doctor was checking me for Lupus, systematic lupus causes neurological issues and a lot of people with the condition present RLS symptoms so I was wondering if there was a correlation.
in reply to midnightmadness
As in my earlier reply, a diagnostic criteria for RLS is that OTHER diagnoses have been eliminated. It does sound as if your symptoms are neurological, so a full assessment by a neurologist is advisable. If the neurologist suspects something else then an MRI might be a possibility but only a small one because an MRI only detects anatomical features, not functional ones.
As regards iron, I wouldn't deter you from eating lots of iron rich foods. Green vegetables are a reasonable source as the green is chlorophyll, which is an iron containing compound. However you will have to take a lot AND the intestine more or less absorbs as much as you need based on blood levels. So as well as eating the iron rich food you need to encourage absorption by drinking something acidic at the same time.
I've been vegetarian for 45 years and always drink Orange juice with the main meal of the day.
If you're NOT vegetarian, then it might be better to eat good meat sources e.g. liver.
MRI scans are not used to diagnose RLS. It is a neurological disorder but no scans or tests will be used to show you have it.
Diagnosis is made after taking a case history. Irresistible urge to move legs and relief from moving are the main criteria.
RLS does move around. I am 79 years old, and have had severe RLS since I was 36.
It has moved from my legs to my elbows. However, I have been using CBD's for several months, and my symptoms are significantly better. I have been able to decrease my opiates by 25%, and hope to eliminate them eventually. I take 1000mg of CBD orally, and several topical oils and creams applied directly to my elbows.
If you are on opiates and have been decreasing them please be aware that RLS is an opiate withdrawal symptom.
You said in reply to someone else that you don’t take any meds for your RLS. Why are you taking opiates if not to treat your RLS?
I am not sure where I said I am not taking any meds for RLS. I am currently taking both Pramipexole 1.0 mg, and Oxycodone 60mg for severe(refractory) RLS. For the first time in the last 20 years the CBD's have reduced my symptoms significantly.
Dear railr, forgive me if you are already aware of this but 1mg is a very high dose of pramipexole for RLS. It is considerably higher than the upper recommended limit. It may be exacerbating your symptoms through augmentation. A classic sign of augmentation is when symptoms move from legs to other parts of the body.
I wish someone had warned me, when I was on a similarly high dose, of the dangers. In particular be vigilant for impulse control issues such as compulsive shopping, particularly online shopping, gambling or sexual drive. Also be aware that at such a dose pramipexole can cause sudden sleep onset which can be dangerous depending on the situation but obviously particularly when driving.
If you were able to reduce and ultimately eliminate pramipexole (admittedly an extremely daunting challenge) you might find your RLS symptoms improved appreciably with an alternative treatment. Mine did. Also be vigilant about ensuring that your serum ferritin remains high - ideally well over 100.
Thank you for your informative response. I am planning on cutting back on the pramipexole. I just reduced it from 1.5mg to 1.0, and hope to get off it altogether.
I have an appointment to see Dr. Buchfuhrer this September-it was the earliest I could get to see him in the Bay Area, as he is only here once a month. I am anxious to get his advice regarding the CBD's and eliminating the pramipexole and opiates.
You are way ahead of me!
Is it hard to get a referral to a Neurologist?. I don't think I've been using the right words with my Dr. I've not yet said that it is a irresistible urge to move (I've always said that I "flip flop" all night) I've never told him that I have to move to get any sort of relief. I still get it in in my legs before bed, I've got to bounce my legs for the end half of any movie or until I can't take it anymore; once I lay down it seems to move deeper and to different parts. All night I flip or roll away from the nagging ache that does not hurt but drives me mad! Mine slows calms down around 3am. This has been going on for over 5 years, only moved around in the last year and a half.
In the UK it takes about 3 months to see a general neurologist but about 9 months to see an RLS specialist.
You could go back to your GP with printed copies of relevant articles from RLS UK and also RLS foundation in USA.
Both sites have info for professionals to access.
Any half decent/ helpful GP will look at what you show them and discuss treatments.
You should be able to get treatment to help you now.
Maybe iron will help and magnesium and making sure you are not on anti histamines, anti depressants / cough medicine which makes it worse.
Many people find raising serum ferritin above 150 relieves their symptoms.
Become your own expert and read everything you can. The more you know the better treatment you can demand.
Thank you! I will be more bold!
in reply to Joolsg
My GP recently told me I'd have to wait at least 6 months to see a neurologist. It would be the one I saw originally who has a bad reputation. She mentioned nothing about an RLS specialist. Do they exist?
She suggested I find a private neurologist. Again no mention of RLS specialist.
I tried to find a private neurologist, the only local one I could find was the same one with the bad reputation. I couldn't really find many neurologists in the country generally and none of them mentioned RLS.
The GP admitted knowing nothing about RLS, said she'd look up what augmentation was.
I might try again My "usual" doctor used to be really good, but he got promoted and doesn't see patients now. My new "usual" doctor, I've seen once, she was cold, abrupt, patronising, didn't listen and put me off seeing her again. I've yet to find a reasonable doctor at my surgery who I can train up
Luckily, at the time, I was quite desperate at not sleeping, but now not so bad, so not so urgent.
I've had RLS for over 20 years, and not long ago it migrated to my back. Not so much restless as a feeling of discomfort. It's usually precedes a leg attack. So, if I'm trying to relax during the evening , I wind up doing stretching exercises in the chair. I've had docs say it's not connected to RLS, but I've found mention of the connection in some journals. Good luck.
Hello midnightmadness I didnt know that it spreads to other parts of the body -
I dont know anything about the medication youre taking .I can only suggest you consult your GP
I don't take any medication yet as I've not properly informed my Dr. of my symptoms, I've been focusing on other health issues. This is getting worse so I'm trying to get more info, I'll be talking with my DR soon. I took two caps of Potassium the other night, had symptoms the night before but not the night I took the Potassium Citrate.
Hello Midnight Madness. Ok -as a suggestion - maybe try taking it every night before you go to bed & see what happens - ????
I had found some info from an online Dr that said he feels the real cause of RLS is a potassium deficiency. There seems to be some concerns over taking too much so I'm trying to be careful. The online Dr. suggested a massive short term dose that I'm afraid to take so I'll stick to the 2 caps for now.
I dont trust online doctors you dont know if theyre qualified or not- thats just my own observation - I'd never use them I'd rather wait until I can get an appointment with my proper doctor
in reply to midnightmadness
Online doctors that say they know the real cause of RLS, are ones to be wary off. There many on the internet, that say what THEY feels is the real cause of RLS. This doctor is just one of them.
Yes, I have tried cbd oil. It did not work. The only thing that worked was to stop drinking bottled water ( it’s loaded with sodium). I have also stopped eating snacks with what I call “flavor dust” on it. For example, chips with cheddar flavoring.
For the last couple of nights I've been taking 2, 99mg Potassium Citrate tablets before bed and I've not had anything near what I've been experiencing. My body could be taking one of the breaks from RLS that its done over the years but it seems to much of a coincidence to me. Anyhoo, last night I took one tablet, was feeling ok, a few hours later my hips seemed to be acting up so took another and slept with 80% less flip flopping. I would not be surprised if this comes down to a Potassium deficiency for me as I've had issues with vitamin D, lactose intolerant so probably not getting enough calcium as well. 99mg is the recommended dose of Potassium Citrate so it would not hurt to add that to daily intakes if there are no contraindications.
Hello Midnight Madness Sorry to hear youre uncomfortable No I prefer my cream -I cant risk taking any mouth medication in case there are terrible & negative effects with them . Thanks for the suggestion
It sounds like you have also developed PLMD, I have it also. Been on Morley Robbins Root Cause Protocol since November. Also, 10 mg Oxycodone 3 times per-day. Doing much better, am starting the Potassium Citrate study today with the supervision of my PCD. Google Study Rls Potassium Citrate.
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