RLS symptoms in other parts of the body

I first started having RLS about 13 years ago. As you can imagine i've been through every medication available, or so it feels. I'm finally at a point where im on Neupro patches 2mg, and Oxy 15mg. This has been fairly reliable, although i wake in the early hours in extreme pain. This is probably the Fibromyalgia i was diagnosed with.

About 2 years ago i started getting the same restless symptoms in my arms, and shoulders. Over the next year it worsened, to the point where the symptoms were in my arms, neck, and shoulders. I couldn't sleep because my upper body would violently spasm every few seconds.

So Oxy was added to the mix, and it stopped all the issues almost instantly. However the problems with my left arm and shoulder has returned. Exactly the same feelings as RLS.

Yesterday i encountered the really painful part of RLS in my right calf (was the original place when it all first started) The pain hasn't lessened at all, and last nights sleep was short.

So just wondered if anyone else had suffered with RLS in other places.

29 Replies

  • You could be telling my story only replace fibro with ME, still similar there!

    I'm currently taking Targinact - Oxycodone/naloxone mix at 40/20mg along with the 2mg Neupro and many nights I add in 100mg of Tramadol around 4am when I wake with the crawling throughout my body. If I can get it I also use cannabis and if I use the whole lot together along with Gentle Iron 25mg, (I notice if I miss this!) I just about am symptom free - just a slight urge to move running through my body but no need to move.

    I've got to the stage where I don't mind the RLS in the legs so much but when my back and arms are off it can be very debilitating. I feel for you, it can be so disheartening.

    Have you tried taking gentle iron in the evening on an empty stomach? Many are getting relief with this approach. Also check for any meds you may be taking that could be exacerbating the whole thing - antidepressants and antihistamines are just 2 of a large band of bothersome drugs.

    Take care.

  • Hello Raffs,

    I was interested in your reply as you are on a similar type of medication to my own. I take a 50 gramme Tramadol along with the Neupro patch at about 6 and another Tramadol in the middle of the night if I have to. However, this is not quite enough and the extra Tramadol makes me feel really woozy in the morning

    My Ferritin is OK. Do you think it is worth taking the gentle iron as well?

    Thank you.

  • I do think the iron would be a good addition regardless of ferritin levels - the blood levels of iron can be fine but the brain levels are low and deplete even more by evening hence supplementing with gentle iron.

    Now I will caution that iron overload can cause health problems so care needs to be taken. I was prescribed Galfer a couple of times in the past and would have ended up with nausea and tarry stools which told me it was time to stop, I use the same yardstick with the gentle iron and although I have been taking it longer than I ever took Galfer - by months - I've never experienced those overload symptoms again which is good as I miss the iron if I forget to take it.

    Targinact is licensed in the UK for RLS and is quite good, (Oxycodone/Nalaxone) and can be used to augment your current regime.

  • Thank you. I live in France but will check out Targinact and Oxycodone.

  • Pas de problème.

    What part of France are you in? (just out of interest)

  • Near Versailles. I am Scottish and my husband is French. Where are you in Ireland?

  • Is that near Paris - google keeps giving me the Palace of Versailles!

    I'm near Derry in the north of the county in the greyest wettest part! I'd love to visit the Languedoc region of France, lots of history there, (well I am sure all over but I'm interested in the Cathars).

  • We are about 10 minutes from the Château de Versailles.

    I know Northern Ireland a little. We used to go to Cushendun on holiday and my mother had relations in one of the Antrim glens - gorgeous countryside.

    I think the weather is actually worse than the west of Scotland.

    As you can see, I'm having a bad night - nice to have someone to talk to between matches round the kitchen, trying not to disturb people. I am in Venice with friends at the moment.

  • I am as usual sat in the rain...colder now....the rain!!! :(

    I'm trying to take a more welcoming approach to the autumn - instead of saying 'I don't want summer to end' I'm taking the welcome the cosy nights in approach.

    ....Considering the wet summers it doesn't make much difference though :)

    I have to keep reminding myself that's the price for such lush green scenery to be alive in.

  • Hate to have to share but can't resist....I am drinking cappuccino in glorious sunshine and looking at the boats. BUT getting chewed by mosquitos.... Ireland not all bad.

  • I'd say being a Scot you deserve a bit of sun :) May that glorious sun keep shining and may the caffeine in your blood cause the mosquitos' hearts to explode!!

    I'll always envy others good weather but never begrudge it, enjoy.

  • I think a large proportion of RLS sufferers have it in all extremities. I get it in my arms, shoulders, and about the only place it doesn't strike is my scalp - so far at least. But in comparison with lots of members of this forum, my symptoms are very mild indeed, not that they don't drive me nuts.

  • I have the same problem and have no idea how to stop it..it is driving my husband crazy what can I do for it.

  • Yes, my partner's RLS moved to his feet ( a burning, hot and swelling sensation develops during the night) about 1 year ago. It originally in his calves only.

  • It appears we all have similar yet different symptoms. And each day/night is an adventure in what will my body do today. I have severe buring in my feet in the morning which moves up my legs and then the jerking movements begin. The jerking movements can sometimes be in my torso and arms as well. Currently, since my doctor thinks I am an incorrigible drug addict, she has cut me off from oxycodone and tramadol. The pramaxapole is useless. I had cataract surgery yesterday and one of the doctors asked me if the pramaxapole was working and I said "eehhh," he laughed. My primary care doctor keeps giving me sleeping aids (ambien, temepazam, etc. She has never asked me the proper questions like do you have trouble falling asleep, do you have trouble staying asleep or both. These are supposed to be standard questions prior to prescribing the proper sleep medication. Google Mayo Clinic and sleep medicines and see the chart they have developed. It is quite easy to read.

    I am extremely sleep deprived, my behavior is changing for the worst. I yelled at my manager as she walked in the door first thing. This is not me!!! I am making an appointment today with a psychiatrist I found in my network since I feel like I am having a mental breakdown. Good luck to all, I hope we all find the right solution to this terrible condition.

  • Hoffie,

    Your second statement struck me. I agree: we don't know what our bodies will do day after day. It's like my therapist said: we don't know what the future (even the next hour is still the future) will bring.

    Regarding Ambien: be REALLY careful with that one! I know that everyone reacts differently to meds., so it might be that it works well for you. It had some really weird affects on me, which my doctor has since told me are not uncommon.

    I am extremely sleep-deprived as well. If you don't mind me asking, does your sleep-deprivation come from just not being able to sleep due to the RLS, or is something else at play? You can answer/not answer/PM me/not PM me, it's completely up to you.

    Take care,

  • Hello Jess3648,

    The Ambien my doctor gave me is not the long acting type. It's useless for me. Luckly, I was able to get an appointment for this Friday with a pulmonary/sleep disorder doctor. My current doctor just keeps calling in prescriptions. I feel like she is just throwing them out there to see what works. I literally have a drawer full of controlled substances and if I took any of them in the wrong order or time, I would probably never wake up again.

    I live in a semi-rural area and since all the changes to our healthcare system here in NY, USA it is almost impossible to get an appointment in any reasonable time frame.

    I was on Oxycodone 5mg 2 times a day for about 2 years and was sleeping 6-7 per night and was feeling pretty good. For some reason, my primary care doctor had a hissy fit and said she would no longer refill my oxy. I had a conference call with my insurance's company's pharmacist since I have several other health issues (diabetes, 2 spine surgeries, RLS, Asthma) and they recommended my doctor give me enough oxy to wean off and then discuss other options. She refused to give me 10 pills so I could wean off. That is when the really serious sleep deprivation began. The first night I only slept 35 minutes, the second night one and one half hour. I am now up to about 3-4 hours. This is all while I was taking 15mg of Temazepam at bedtime. Then the Ambien 10mg. I wear a sleep tracker and it seems to be fairly accurate. So in answer to your question, I think the abrupt change in meds is causing this chaos in my sleep.

    I hope you get some help for your sleep deprivation. I will assume you have similar symptoms that I am experiencing. I am yelling at my loved ones, my boss and have a chronic headache, elevated levels of pain in my spine, feel lightheaded and just cannot function in general. Don't ask me how I made it through cataract surgery yesterday under these conditions but I did not want to postpone again, but fortunately it went well and I now have 20/30 vision in the corrected eye. YAY!!!

    Best wishes and I hope we all find a solution to this frustrating condition.

  • Hi Hoffie, I hear you. I'm beginning to feel our healthcare system is becoming controlled by our new political situation. Scary. Take care, Burma (burmag)

  • Well, shame on her! I'm not one for instilling fear in others, but maybe you need to go back and tell her that you are barely surviving (dare I say dying inside?) without it. I mean, this is only being honest, right? And doctors want us to be honest with them, do they not? I agree with you that medication can play a role in diminished sleep quality, especially when you take meds. for other health issues. I'm assuming you know about medical interactions and all that?

    I have no experience with Temazepam, but it might be worth looking at the side effects this has. I have found out the hard way that doctors give prescriptions without always telling you about these (even the serious ones). An example: I was put on Pramipexole in 2011 for PLMD. Since the doctor never mentioned side effects, I was very scared when I augmented on it in 2015!

    Yes, I have similar reactions. I am not yelling per se, but I do become irritated and stressed very easily. I am also having a very hard time functioning normally. It's hell, is it?

    Congrats on getting through the surgery! If I had a nickel for ever time I said or thought "ok, how the heck did I manage that in my condition??" I'd be rich. Our bodies are fascinating bits of machinery, and I think they have an almost magical ability to stay afloat when we need them to.

    Take care,

  • Hi Jessica, Couldn't have said it better myself. All the more reason for doing our own research. When we go to our appointments armed with information and sources, I think we have a better chance of being taken seriously ( and the docs might even learn something from US!) I go to my appts armed with my 4x6 index cards complete with written sources. (Complete-like notes from a term paper) ( can almost hear some staff's thoughts "Here she comes with her index cards.!) LOL. Take care, Burma PS And, yes, it's amazing how our bodies keep going despite (at times) medical onslaughts-like the 'energizer bunny LOL again.

  • In my experience of sleeping tablets including ambient augmentation happens quite quickly. The temptation to up the dose of nights of not sleeping is there but not only is it dangerous it simply does not work I'm afraid I don't have the Answers but I'm pretty sure there is no long term help down the tablet route.

  • I have had rls since I was in my early twenties, am 72 now. For the first time in about 30 years, I am sleeping. This is thanks to my head Dr. putting me on horizant.. I take one at 5 and one at 8. It is so nice to have hope of going to sleep.

  • This group is fantastic, but damn it frightens me to read so many different people talking about the same issues. After watching the documentary not long ago, watching the poor folks with the shaking legs, i was thinking, jeez that's nothing compared to the symptoms i have. My wife has found me curled in a ball, in an almost fitting state, with my legs, arms, neck, shoulders jolting out of control. It's like being electrocuted every couple of seconds.

    I'd been on the Neupro patches, anti - depressants, and something else (damned if i can remember) Worked fine for a while, and then suddenly stopped (worked every day, then stopped one day)

    My wife tried to get hold of my neurologist to get some advice. Was told i had to wait for an appointment. I was desperate, because i couldn't sleep, and i work full time.

    I think the oxy saved me (literally). I read about it on the internet, and i suggested it to the GP, who agreed to give me a weeks prescription. They suggested 5mg, which didn't work, so i took 15mg. Slept like a log.

    They weren't going to give me anymore, and at that point i felt suicidal. I love my job. Been a computer engineer for 13 years, but i drive everywhere. It broke my heart to think i wouldn't be able to keep the job. I cried, as i was driving.

    My wife was furious and telephoned the GP's, and went crazy at them.

    They listened to her, and they kept me on them. Even after visiting the neurologist he conceded it was the best course of action. He admitted the Neupro patches had failed for a large amount of his patients.

    At this moment i'm back on the Neupro (alternating between 1mg and 2mg), and 15mg of Oxy. It works 80% of the time.

    But like a lot of you guys, you never know when its going to strike in a different place.

    I had it for 24 hours in my calf yesterday for no reason. Made it difficult to drive. And then it was gone.

  • Kudos to you for putting up with this shit (pardon my French) syndrome and kudos to your wife for "saving" you.👍

  • hi, hightechwreck, I'm so sorry you had to go thru all that . It's too bad many doctors and nurses can't suffer -just for a day or two - as part of their education. They would learn so much! Your wife sounds like a wonderful advocate for you. Glad you have her. Maybe your neurologist will understand his next rls patient better.Take care burmag (Burma) (retired nurse)

  • The Oxy is a double edge sword. Although it provides much needed relief and sleep, when it is time to come off, your life is hell. It changes something in your brain and depending on how long you were on the oxy, it could take months for your brain to return to normal. I took oxy for about two years and it's been three week off it. I have severe headaches, only sleep 2-4 hours per night and have foggy brain. I forget everything and make a lot of mistakes in work and at home. NEVER will y take this drug again.. Just don't do it.

  • Yes I get it in my arms sometimes. :(

  • Me too.

  • RLS is a progressive degenerative neuromuscular condition which can affect the entire body. It is currently affecting my arms. I take Temazepam to help me sleep and Baclofen for my muscle spasms, Ropinirole for the RLS (2 [2mg] at night and one 2mg in the morning, 2 Gabapentin at night and in the morning and 800 mg Ibuprophen for pain. There is nothing else I can take for pain because of allergies.

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