rls in other parts of body????

My daughter is 19 and we have noticed her sudden jerks (usually her head/shoulders)for over 4 years. Last year she went to the doctor because she was feeling very tired constnatly. After blood tests she was given iron. This was taken for 6 months and more tests done. this time they mentioned ferritine levels and more iron tablets for 6 mths. She is going for more bloods this week and I stumbled across rls.

She says she has difficulty sleeping, is constantly tired, gets swollen and sore eye lids but eats a good and balanced diet.

Could she be suffering with rls as a result of her low ferritine levels and is it common for the jerks to be in other parts of the body other than the legs. Any help or advice would be gratefully received.

She has been on iron tablets for 12 months now and her ferritine levels are still low so we need to get to the bottom of this - they have suggested crohns and celiac as possibilities.

I have only just realised that the jerks she has could be rls - and that this could be related to the lack of iron.

Just really wanted to know if anyone suffers with rls in arms/shoulders/neck as she doesn't really jerk her legs

8 Replies

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  • See my answer to your other question. also a great web site is rlshelp.org. You cxan ask the expert in RLS any questions and he will answer it. There are emails on that site all the way back to 1998. As you will see, not too much has changed except for the fact that we have a few meds on the market.

  • Hello, just a shot in the dark BUT try + see if your daughter has SLEEP APNOEA

    this makes you very tried ALL the time with NO energy, Look it up on the NHS CHOICES website! Mind you you may have to fight to get a referral to a NHS Sleep clinic BUT See what your GP Has to say. I don't to worry you any more

    Than you already are BUT exterme triedness is a possible symptom of SLEEP APNOEA. All the best.

  • Thanks everyone. We have spoken to the doc and as I thought he has poo-pooed the rls saying it is only in legs at night. But on a positive not full blood tests including thyroid and ferritins - her levels last time was just 19 - apparently 30 and under is low!!!!

    Will look up the slep apnoea

  • RLS can manifest in other limbs, but usually only when its especially bad in the legs first.

    You may want to research into Chronic Fatigue Syndrome, It doesn't sound too much like apnoea (which would be very recongnisable from an extremely broken breathing pattern when she's asleep).

  • Just to let you (and your Doctor more specifically) that I suffer with RLS and have done since my teens and I regularly get it in my arms as well as my legs, particularly when I am more tired that usual!

  • Hi - yes thanks. I think the doctor is a little out of touch with the rls.............

    I Still think she IS suffering from this as a SYMPTOM of the low ferritine/iron levels.

    The doctor - and my daughter and myself - is more concerned about the causes of the low ferritine levels - so hopefully (fingers crossed) when this is sorted the rls will become more managable and if not we can address that with the doctor and a later stage.

    At the moment as her ferritine levels are worryingly low I think we need to get this sorted as a priority as to the reason for this occurring.

    Many thanks for everyone's help and support on here and when we get through this first round of test I am sure we will be back for more advice etc on the rls

  • I usuallyget my RLS in the legs, mostly ankles &calfs but also thighs. Rarely , but does happen in the arms.

    What is really bad is when it goes high up the thighs and into the groin.

    This is really annoying because there is nothing to "move" for relief.

    Have your daughter checked for some mal absorption problems, possibly related to unknown food allergies.

  • More blood test in 2 weeks time but has coelic disease tests 6 mths ago (celiac etc) and these were negative.........

    Fingers crossed these tests will show something more.

    Thanks

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