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Actually, separate topics - here goes!

Posted , 3 users are following.

ratfancy
ratfancy

Comments welcome!

1) Which iron tests have you found most helpful - my ferritin is normal.  Yet, I've read that I could still benefit from oral or IV iron supplementation.  Has this helped anyone?

2) I recently started the Neupro patch (1 mg).  I seem to have worse augmentation, and upset stomach, and balance.  Anyone have this experience?  I quit the patch almost right away.

3) Why would the FODMAP diet help?  (My degree is clinical nutrition.)  I don't see this referenced anywhere in the RLS Foundation literature, and it seems they would promote if it were effective.

4) Since I just joined the RLS Foundation, I realize they have helpful information, but too funny, they recommend getting more sleep to help with symptoms!  Uh huh.  Obviously, whoever wrote their patient brochure doesn't have RLS!  LOL

0 likes, 4 replies

4 Replies

  • beagle
    beagle ratfancy

    Posted

    Hi Ratfancy, know that name from another forum(?)

    1. I raised my ferritin to nearer 100 than the normal 50ish but got no gains. Still augmented easily on DA's. Am also interested if I can do anything else with iron.

    2. Don't understand your comment on augmenting on Neupro if you weren't on it for long. If you came directly from augmenting on another DA then it is not surprising. You would need a complete break between.

    3. I haven't gone to extent of FODMAP diet but know that diet is a major trigger for me. Spicy food, big meals, eating late, sugary foods, potatoes are triggers for me and some others but not for everybody. I think we all need to make a diary to identify diet to RLS triggers.

    4. Love the sleep advice. I read one article that started RLS was irritating!

    • ratfancy
      ratfancy beagle

      Posted

      Thank you so much for your thoughtful reply.  I went from augmenting on ropinirole to the patch - hence a continuation of problems, I'm thinking.  I'll try to pay attention to food relationships.  My friends says sweets at night bother her.  I think I'll try a higher protein diet again.  Today I visited my neurologist, and I'll try ferrous sulfate pills 325 mg twice a day.  Probably won't help.  Codeine sulfate does work - for now.  I feel so much empathy for those who find relief and then it fades.  This is a tough syndrome.

    • RobertT
      RobertT ratfancy

      Posted

      Why would you take ferrous sulphate rather than Ferrochel or haem iron? Have you looked at the mtiochondria situation and considered carnitine?

      My serum ferritin was measured in April as 130 μg/L and I take 90 mg of Ferrochel a day. It has not stopped my RLS (so far), but I think it has reduced some of the worst symptoms – a shuddering I had.

    • RobertT
      RobertT

      Posted

      I should say "... 90 mg as Ferrochel ..." of course.

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