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08-25-2019 03:46 PM
@Mindy D wrote:
@NickNack wrote:@Mindy D @Bri369 Even though my doctor told me I wasn't anemic according to blood work I had done in March, I will call on Monday and find out how much it costs to have my iron tested. She told me she would test it if I wanted her to even though insurance won't pay for it.
Maybe you were tested for anemia in March and the doctor is not making this clear.
Interestingly, besides anemia that shows up in blood counts there’s this hypothesis coming out of the RSL clinic at Johns Hopkins that says that those with RLS might have anemia that affects the brain and nervous system but that does not show up with blood testing for anemia. I was surprised when I read about this. There’s little research to back up this hypothesis, but there is some.
From The RLS center website at John Hopkins:
“The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency. Professor Nordlander first recognized the association between iron deficiency and RLS, and reported that treatment of the iron deficiency markedly improved, if not eliminated, the RLS symptoms.
✅Despite this strong association between serum iron insufficiency and RLS, only about 15% of the RLS clinical population appears to have peripheral iron deficiency (serum ferritin < 50 mcg/l). ✅To account for this, Professor Nordlander in proposing his “iron deficiency” hypothesis of RLS stated “It is possible…that there can exist an iron deficiency in the tissues in spite of normal serum iron. ”https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-i...
@Mindy D She said I wasn't anemic in March, so I did think that meant I was tested for anemia. She said my iron could be low even though I wasn't anemic. I don't really understand that but will call tomorrow about having it tested.
08-25-2019 07:28 PM
The Requip worked for my sister, she was bothered by RLS for years. They did fiddle with the dosage. Some people get relief with vitamin D supplements but that didn't work for my sister.
08-25-2019 07:44 PM
I started with RLS when I retired and starting hiking and working out every day. Doctor put me on Requip, didn't work for me. After I quit the 5 mile hikes and hour long Pilates work outs my RLS was less, but still affects my sleep. I now only do Yoga and 30 minutes of Pilates and take Andrew Lessman Circulation and Vein Support. I still have RLS if I over do it though,so I don't know how much the supplement really helps or is it that too much time on my feet exercising is the cause.
08-25-2019 07:57 PM
@blackhole99 wrote:I started with RLS when I retired and starting hiking and working out every day. Doctor put me on Requip, didn't work for me. After I quit the 5 mile hikes and hour long Pilates work outs my RLS was less, but still affects my sleep. I now only do Yoga and 30 minutes of Pilates and take Andrew Lessman Circulation and Vein Support. I still have RLS if I over do it though,so I don't know how much the supplement really helps or is it that too much time on my feet exercising is the cause.
@blackhole99 I don't know if you'd be willing to try another med, but there are many different ones that are prescribed for RLS. Web MD and Mayo Clinic have articles on this, as well as other websites.
08-25-2019 08:10 PM
When I started taking Cymbalta I developed RLS which I found out was a side effect. I am off the Cymbalta and still have it. My doctor prescribed 3 mg of Mirapex nightly, it helps.
08-26-2019 10:12 AM - edited 08-26-2019 10:14 AM
I find it's worse when I haven't done some dedicated exercise and gotten my heart rate up during the day.
When I sit working on a deadline most of the day, RLS will torture me that night.
The total opposite of @blackhole99 , go figure! Maybe the ticket is moderate activity. Long hikes can make my crampy feet act up, come to think of it.
08-27-2019 11:34 AM
LDN (Low Dose Naltrexone) apparently takes of it.
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