Episodes of RLS months apart

Hi, I used to get RLS about once every year or two in the summer for a few nights and then it would disappear completely. It was so rare it didn't bother me. Then at Christmas just gone I had a longer episode. I went for a blood test and my folate and magnesium levels were perfect. I went to a chiropractor and he found a stiff joint in my lower spine which might have been contributing. Then my rls disappeared spontaneously. Four months later suddenly it's back. I really can't work out its cause.

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  • I should clarify that I never had treatment for the stiff joint so it can't be that it got better for that reason.

  • RLS can come and go at the start of the RLS journey, RLS is progressive so that could be the reason you are finding it lasting longer. Or you ate or drank something that triggered it off for a longer period, Or a OTC med could be another reason. I wouldnt bother with a chiropractor you could have spent money for his diagnose of a stiff joint for nothing.. Its not Folate or Magnesium you need to be tested. its your ferritin level you need to be tested to see if that is low. maybe that MIGHT be a reason for your RLS getting worse. So many reason why it is coming and going.

  • Is ferritin the same as iron? That was fine too.

  • Ferritin and iron are the same but different.

    Serum ferritin is the stored iron while blood iron is available to the body.

    It's an extremely complicated area and the experts are still discovering new stuff about it. Eg - the role of hebcidin in switching iron on and off.

    You need to get a serum ferritin check and obtain the number- it should be 70- 120 roughly for rls control. But that is not the whole story.

    Your episodes were at Christmas and in the summer. That makes me think that you might have had a go of hayfever in summer and a cold in the winter- which necessitated taking antihistamines and cough medicines. These both are potent triggers for rls. Does that tie in at all with your recollection?

    Cheers.

  • Doctors are always doing this - telling patients their iron levels are 'normal'. You need to get the actual figure and make sure it is for 'serum ferritin' as this is the most accurate method of measuring iron for rls purposes. 'Normal' for RLSers is not the same as 'normal' for non-RLS sufferers. Latest thinking is that we should be aiming for levels of over 100 whereas I believe non-RLSers can have levels from about 15 to 300 depending on gender. In your shoes I would telephone the surgery and ask for the specific information - the figure and confirm that it is for serum ferritin.

    It could be that when your iron levels fall your RLS represents.

  • Thank you so much for all the advice so far. Could it be that eating more iron rich foods could help?

    I have only just realised this but I go through periods of excessive sleepiness in the day where I sleep normally at night and still need hours of sleep in the day. It was a few weeks into that when the rls showed up last time. Then when the sleepiness wore off, so did the rls. I am sleepy again now and rls has arrived. It might just be a coincidence though.

  • That seems to be the nature of rls. I've just had 5 consecutive good nights. Why, why, why? Is it something I've done or not done? Is it something I've eaten or not eaten? In the past I've been convinced that a low oxolate diet was my salvation, that the eye drops I use was triggering it but nothing lasts. It's a mystery

  • My Ferritin was 49 "normal" raging RLS. Supplementation raised it to 105 - RLS symptoms went away after 3 days! But not the insomnia.

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