HELP! What does RLS in hands and arms look like?

[OFgc]

Hi everyone, I'm new here.

I'm very concerned about my husband. He has had RLS since I met him, that's 22 years ago (probably before). As strange as it might sound to you, we have never ever talked about it, and he has never ever complained about it. A year ago I noticed a lot of restlessness in his hands on top of what I already seen in his legs (thinking about it some of it was there before and I hadn't noticed how frequent it has been).

He would do strange things with his hands like putting them over his head with his elbows folded. He has shoulder twitches that are getting worse and more frequent. He sits in front of the tv and his shoulder just jumps up and down as if he is shrugging one shoulder. He has also developed repetitive motions, I think you can call them tics. Like he would pull his nose a lot, or brush is hand on his chin or run his hand on his face. I think these motions might be involuntary as he pulls his nose when he sleeps too. I understand that this movements are meant to release the tension that builds up and the need to move his hands. When he is driving it looks like he just cant sit still, switching hands on the wheel all the time. He can't stop going in loops over the movements I just mentioned. It seems like for some reason he cannot hold the wheel on 14 and 10 but holds it at the bottom with two fingers and occasionally his finger would jump open leaving the wheel. In addition I see his fingers moving on their own. He would sit still and his fingers just move. I see him sleeping on his hands or holding them firmly together over his head, or he would fold his wrist leaning on the back of his palm with his elbow held high in what seems as an unnatural and painful position .

At times I get really really scared seeing all this especially when being in the car with him.

A long time ago I have tried talking to him about his jumping shoulder and all the leg shaking and moving in the evenings, but he brushed me off. Again, we don't talk about it and he never complains but I see something is really wrong.

Has anyone experienced anything like it. does it sound familiar at all. I must add that it seems to go on all day long not only at evening or night. His tic especially worry me. I know that there is a connection between RLS and tics. I don't know how aware is he of them.

I wouldn't want him to take any drugs but would like him to try the vitamins, minerals and diet changes first. How do I get to talk to him?

Any encouragement would be highly appreciated.

Thank you for reading this far.

[Madlegs1]

He really needs to see a neurologist. His symptoms are far too serious to be diagnosed from here.

What medications is he on?

It sound like being far more than rls.

I'm not medically qualified to give an opinion - but I have my suspicions.

Go see that neurologist.

All the best.

[OFgc in reply to Madlegs1]

Thank you. He is not on any medications.

[Madlegs1 in reply to OFgc]

Then all the more necessary to get him to a specialist before somebody gets injured by his driving.

All the very best in your efforts.

[OFgc in reply to Madlegs1]

Thank you.

[Joolsg]

That’s a really difficult situation. If your husband has never talked about it and doesn’t want to talk, it will be like dragging a horse to water...

How do you know he has RLS? Did he tell you he had RLS when you first met? Are there any other family members ( mother/ siblings) you could mention your concerns to?

If your husband has been on dopamine agonists I would describe his symptoms as Augmentation ( I had RLS EVERYWHERE during Augmentation). If he’s not on any medication at all, then he needs to be so I second Madlegs’ advice- your hubby needs to see a neurologist as soon as possible.

Rope in friends and family to persuade him to get to the doctor.

Good luck

Jools

[OFgc in reply to Joolsg]

Thank you.

I assume(d) he has RLS by reading about it. At least it seems this way for year while he had his legs moving in his sleep very quickly in a way one cannot move willingly. And he would move his legs a lot when sitting or laying down on the sofa. He told me nothing when we met about RLS. He is not taking any drugs so it isn't Augmentation.

[Kaarina Administrator in reply to OFgc]

If he is asleep and his legs are moving very quickly it could be PLMD rls-uk.org/periodic-leg-mov... Your husband could be suffering from both but as others have said he does need to be seen by a neurologist or get a referral to a sleep clinic.

[OFgc in reply to Kaarina]

Thank you Kaarina for the link. After watching the videos I don't think its PLMD...

[Joolsg]

It does sound like severe all over body RLS but he really does need to see a neurologist or ask for a referral to a sleep clinic. Maybe you could put it to him that your sleep is being affected and could he help you by getting help for himself.

Best of luck

Jools

[OFgc in reply to Joolsg]

Thank you. He doesn't bother me much when we sleep... I'm sooo worried just not knowing but I can't seem to open an conversation with him about it after him waving me off about a year ago...

[Cass44]

I'm going to go with madlegs on this. Try and get to a neurologist.

If his parents are around, and you are in contact, you should ask/notify them

Go for that neurologist ASAP

All the best

-Cass

[OFgc in reply to Cass44]

Thank you

[involuntarydancer]

Maybe I am assuming too much but it sounds from your description as if he has these symptoms all the time. One feature of rls is that it tends to get worse in the evenings and at night. It's not hard and fast but it is most common. I would agree with all the others that it sounds like he needs a diagnosis. I hope you get a resolution.

[OFgc in reply to involuntarydancer]

Thank you.

[TheDoDahMan]

One of the great banes of us RLS sufferers is a horrid inability to get a normal amount of sleep due to our body jerking shenanigans. Does Hubby get anywhere near his normal 8 hours?

[OFgc in reply to TheDoDahMan]

Thank you.

No, he doesn't but he never complains about sleep deprivation either.

He gets up early in what he calls "spontaneous awakening" and it has been like this since I met him. His legs would move as he sleeps, some nights more and some less. What seems more worrying is what I see when he is awake.

[Eryl]

Is he calmer in the mornings and more restless in the evenings and bed time? If so, then I suggest that it's food related. Try cutting out any foods with added sugar e.g. biscuits, cakes, soft drinks (sodas), deserts etc. You could say it's a general health drive, but that would mean that the whole family would have to follow suit.

[OFgc in reply to Eryl]

Thank you. We are pretty food aware at home. No cookies or snaks or ice cream. We do eat occassional desert at resturants (sharing 1 for the 4 of us). At home i only make healthy food. No soft drinks whatsoever. BUT my hubby spends a lot of time at work and meetings and sometimes he would give in to what's available. Something deeper needs to happen. I wish I could put him b12 d folate magnesium and curcumin.

[Kaarina Administrator in reply to OFgc]

Does your husband ever make an appointment to see your doctor about any health issue and talk to you about it afterwards?

[OFgc in reply to Kaarina]

I guess u meant concerning himself? (not me) yes he does.

[Kaarina Administrator in reply to OFgc]

Sorry, yes I did mean for himself. Would it be at all feasible for you to write to his doctor explaining your concerns about your husband so that he is made aware of what you are noticing? I well appreciate that with data protection/patient confidentiality, the doctor will not divulge anything to you, but at least you may feel you have tried to do something in what appears to be a difficult, sensitive situation.

[OFgc in reply to Kaarina]

Thank you Kaarina. I have thought about going to meet our doctor and tell him of my concerns but I feel bad about talking about my husband behind his back (as I do on this forum too. I just can't cope all alone with my worries).

And it is not as if my husband is a run down, self neglecting person, he isn't. He just has a small but serious burn on his hand he took real good care of it. Is it possible that he is not aware of his symptoms? Can the brain get used to all that restlessness? This has come to a point that I can hardly enjoy sitting with him in front of the TV...

[Kaarina Administrator in reply to OFgc]

I really think it is worth thinking about either writing or meeting your doctor (I take it you share the same doctor?) as this is very understandably affecting you immensely.

[OFgc in reply to Kaarina]

Thank you Kaarina for understanding my situation.

[Hidden]

Geez, this is a tough one. You’ve probably already thought of this, but what about appealing to his emotions? For example, you could say that you really care for him and are worried about how this is affecting him and will continue to affect him down the line.

I agree that he needs to be given a proper diagnosis ASAP!

[OFgc in reply to Hidden]

Thank you Jess.... Yes I have. And of course I am worried... Very worried. But it's like my tongue is tide... I find it very strange that he doesn't talk to me about this and I respect it... but I see the progression of his symptoms. I feel that it is my responsibility to get him checked and I'm hopeful something can be helpful... But it's like I'll be the first to say out loud "something is wrong"... Does that make sense...?