My legs are driving me mad not just the legs but my arms as well

Doctor sending me to a neurologist I have tried iron tablets lavender oil even walking around I have ended up in a shower at three am scrubbing my legs but it makes no difference. dread going to bed as I get very little sleep . Although I am very tired I know once I try to relax it starts legs and arms. Also started to get strange feelIng I n my arms. It happened when I tried to lift a plate out of a cupboard above head they both felt as it they had a very tight bandage wrapped around them the sensation gets so bad and painful that I cannot move them for about five minutes then just goes really wired .

16 Replies

  • Hi, 123098, are you taking any meds right now for RLS, or any other meds you have been precribed by your doctor and any OTC meds. Your arm sensation and the fact you couldnt move them for 5 mins is a bit unusual. I would discuss that with the neuro.

  • I agree with Elisse, it is unusual not to be able to move for 5 mins. See the Neuro and tell him about that in particular.

  • I could be wrong, but I think you might be misinterpreting her use of "cannot move" - I don't think she literally meant that she couldn't move (as if her arms were paralyzed or in some other way immobile). I think she meant the pain was so bad she wanted to keep still cause it hurt to move them. But either way, yeah, it's not a common symptom of RLS... usually with RLS, even presented as pain, moving is actually the only thing that provides (temporary) relief. When the pain spreads to my arms and shoulders, I want to rub them, wiggle them, anything BUT keep still... and the only thing that helps is oxycodone (tramadol in the past). I hope the doctor is able to do something helpful in this case. Good luck.

    Now that I think about it, RLS is usually triggered at rest. Pain in your arms while reaching above your head definitely sounds like it would be a classic symptom of something (else). Maybe Google it?

  • There is pain with RLS

  • I think you are probably right ookla, and i didnt read it quite right. But either way, it does need investigating. :)

  • I see what you mean the rls i get. leaves me having to move my legs and arms it also gives me feelings like my legs are on fire or insects crawling underneath the skin as you say the movement gives temporary relief for me usually minutes . on the other hand the sensation I mentioned in my arms is totally different leaving my arms feeling like they are in a vice very heavy and feeling like they are being squashed I am unable to move them until the feeling passes which can take up to five minutes. the sensation starts at the biceps and works its way down through to the wrist I am actually thinking it may be spinal nerves causing the problem but in the end its not a very nice feeling which is probably why my GP has referred me to a specialist who I hope can help me with the rls as well xxxI dont like to google things as I feel you can end up believing or convincing yourself you have some horrible ilness and make matters worse for yourself a little knowledge and all that, I can not take tramadol but do take morhpine although not for Rbs and I have not taken any new meds recently , anyway just thought i would put it out there to see if any one else suffered from the arm porblems thanks for all your help have had an appointment now to see specialist next month so hopefully will get a diagnosis and will let you all know thanks again for your support xxx

  • I hope the specialist will know what the arm problem will be. Will be interested to what he says. Taking morphine should by rights help relief your RLS. Good luck with your appointment :)

  • Yes, I have the RSL ALL OVER MY BODY. had it for years and years. REQUIP has been working for me ( I took Mirapex for some years, too, before I changed to the ropinerole --requip) but they both make me nauseous and sleepy so I only take them at night. I think the requp is beginning to not work as well as it used to. You know I think this stuff is some kind of seizures, I wish there was more research. my legs and arms tighten every 30 seconds. Sleep study 10 years ago showed I was "awakening" every minute from the RLS. I CAN NEVER NEVER TAKE A NAP because if I lie down, BINGO---LEGS TURN "ON" WITHIN 5 MINUTES. The only thing that helps when you are alone at night is to GET UP AND WALK AROUND THE ROOM (OR WHEREVER) as fast as you can for 5 minutes or so. When my husband was alive he could rub my legs for about 5 minutes and it would usually stop the aching. If it didn't, I would ask him to do another couple of minutes TIL IT STOPPED. I would lie on my stomach and he would rub from my ankles up the calf FIRMLY WITH HIS THUMBS just up passed my knee area. RIGHT NOW I AM TINGLING ALL OVER LIKE I HAVE DRUNK 5 CUPS OF COFFEE. I know it is the RLS, so what I am gonna try right now is a requip with a half of a nodoz so at least I wont be sleepy but it will still make me nauseous I know. I HARDLY EVER DRINK COFFEE.

  • Yikes...what I know is anything with caffeine makes symptoms worse along with some other medications.

  • I am a 40 year sufferer of the very symptoms you describe. First I get a slight head ache, and just min later my throat seems to not work as it should, then a tingling in my hands and feet which turns into an awareness of my limbs and body that is the urge to move and if I didn't move, I'd go mad.

    Next the urge to move starts involuntary jumping and jerking that looks contrived, if you saw me 30 min ago. Even my wife of 60 years is not so understanding. She thinks I want to be up walking the floor, all night.

    Some times the Meds. work beautifully and some times they don't. I won't bore you with a lost of what I take. My doctor at Mayo Clinic in AZ told me that with the volume I am take I should be comatose, but instead i stop jumping and jerking.

    It is not uncommon to have to change Meds. every few years to be able to reduce the dose below the level that might be dangerous to you and the public in general.

    I find the so called experts are lost as to the cause only to say in manifests itself differently in every patient.

    If you are able to trace your genetic heritage you will probably find a jewish woman as an ancestor. When my doctors told me this I went back to my Dad and Mom and asked the question about past generations and found a jewish great grand mother on both sides.

    My mom had 8 sisters and 7 of the nine girls had RLS and lived miserably to their 90;s. One even lived to 106, and one took too many drugs in her seventies after being confined to a wheel chair. maybe on purpose and maybe not.

    Anyway 10% of the world population has RLS and the research into the cause and treatment is almost none. In contrast 3% of the world has Parkinson's disease and there

    is a foundation and the cause is well known.

    All the treatment has been ''off label'' that is, they discovered by accident that the same Meds used for Parkinson's sometimes helped us and they are free to prescribe ''off label'' drugs to anyone. If I had not have had favorable results I would not have survived the urges to make it stop no matter what I had to do.

    I am almost 79 yrs old and my cardiologist says my physical health is like a man who will live into their middle 90's and he thought that was ''good news''. I didn't think like he did and he was puzzled. Doctors look at RLS as a minor annoyance and we see it as a route to the insane asylum.


  • Unfortunately the cause of Parkinson's is not known...

  • It is known that there are increased iron levels in the substantia nigra, but they are no nearer understanding why. It is clearly some failure to modulate iron levels, and interestingly RLS may also be a failure to keep brain iron at a healthy level - though in the case of RLS the evidence points at low brain iron, not too high levels in a particular area. Research is funded and going on into RLS and you will find it on Pubmed, but very little seems to be understood yet about how the barrier between the brain fluid and the bood operates.

  • I didn't mean they know why the ''substancia-negra disappears, but autopsies always reveal that there is none of the black substance when a Parkinsons patient dies.

    The is no equal when we have RLS and we are almost as misereable. Our brains appear normal, but we know it is not normal.

  • Sad to say I lost my wonderful husband to a vile illness MSA (Multiple System Atrophy)

    The next three nights my legs were twitching more than ever and I had no much needed sleep. I do take magnesium tablets and drink a lot of tonic water. I think if you are under any extra stress like I am at the moment, your legs get worse. My doctor gave me a low dosage of Diazepan to relax me for the coming days. I think us suffers of RLS have to take something to calm us down during the day. I have heard of Rescue but not tried it yet.

  • Do you get pain with your RLS ?

  • I have had RLS for 38 years since my pregnancy with my daughter, it has driven me to tears. I read about magnesium and from the first night i took it IT WORKED, I was so relieved, it worked for about 8 weeks but now RLS has come back, so disappointed. I also get it in my arms.

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