Restless Legs Syndrome (RLS) Discussion Board

All of y'alls is cracking me up...

legs, that is exactly the reason why I was VERY careful while using Neupro. As soon as the first backing came off, it went into straight into the foil wrapper. Once the new patch was applied, the second one backing followed the first one into the wrapper along with the old patch. The wrapper was then folded over all three to make absolutely certain none of them came out. I didn't want to mess with any of those 3 parts ever again!!!

About three years ago, SIL wore a sequin and glitter-laden blouse to a holiday gathering at our home. Now, for those of you in the over 50 crowd, my husband rivals Felix Unger in the clean and neat category.

For months, and I mean MONTHS, husband found glitter and sequins in the house.

I, of course, never saw it.

I had to google Felix Unger....
(For information - there is a real Felix Unger - an Austrian world leading heart surgeon who performed the first artificial heart transplantation in Europe.)

yeah, I should have said, those of you over 50 who watched 1970s American sitcoms!

About 20 years ago after attending a sleep clinic, I was diagnosed with rls. The doctor did not find that low iron was a cause of my condition and he prescribed clonazepam. As many of contributors here know, this was a short lived masking of the condition and the beginning of many drug related experimentations. I do not want to talk about the symptoms of my disease. However, the fervid desire for relief from rls debilitation has resulted in an immense expenditure of my energy and time. Energy and time I could have used in constructive endeavors. The last couple of years have been increasingly difficult. The most recent medication my doctor prescribed for rls was Mirtazapine. This is a terrible drug and it greatly increased my rls symptoms as well as my weight.

Finding the RLS Foundation on line seemed like a welcome place to stop and rest for awhile. I read your stories. Felt excited about the progressive direction of the organization. And the most important information I gathered were the articles about iron. Although I was never told that my iron was low, I decided to start taking an iron supplement. I added B vitamins. Added c d and magnesium. I did not consult a doctor about this because I don’t know if I even trust them at this point.

I have been symptom free for 2 weeks. I still hold my breath fearing this is not real. This Thursday I will turn 74. The RLS Foundation and all of you have contributed to my healing. What an incredible birthday gift. My birthday wish is that all those who suffer will soon heal. Thank you.

boots - what a great story! Yes, iron should be the FIRST discussion between doctor and patient, but rarely is. So glad you found the Foundation and this information. May your symptoms be at bay for a very long time.

What a lovely post, Boots. It is so uplifting to hear of your successes with iron. It may be worth getting the blood test to check your serum ferritin levels so that you can monitor yourself going forward.

I too found a new lease of life when I found this forum. The careful considered posts of everyone on here empowered me to take control of my condition, try everything and feel confident about what I was doing. I learned far more here than anywhere else. On top of that I have felt supported. It is beyond wonderful to have somewhere to go where everyone understands what you are going through.

Boots - thank you for your heart warming words and for taking time to do so.
Happy Birthday

Boots, thank you for posting your encouraging story...it really moved me. Any time I learn that one of my fellow RLS sufferers gets any relief, it makes me happy and gives me a boost of can-do energy to keep searching for a solution. I'm sometimes overwhelmed by the kindness and thoughtfulness of the people on this forum, and ever so grateful to be a part of an amazing and strong group of people. Wishing you a very Happy Birthday.

20 years, boots! It makes one sad, doesn't it - - but I also feel happy to know that you did find us and did start taking iron and have had two weeks of relief! I expect it will last, because sometimes a bit of iron is all you need. (I wouldn't stop the other stuff any time soon, though - it's working, no need to mess with it!)

Legsbestill,

So sorry as I forgot to mention: a big Congratulations! on getting the iron up to 140. My highest ferratin level was at 110 and I know that it's dropped since I stopped eating organ meat every day. I would love to add more oral iron, but it starts activating the RLS with the digestion issues. Wishing you the best on the oxycontin withdrawals. Thanks for the thread and keep us posted!
Kathy

Thank you Kathy. I still wonder if it could possibly be for real. It seems a big jump compared to my previous progress. Am 6 weeks off oxycontin now and think withdrawals are finished. Hooray. So far am managing my symptoms with kratom and a Relaxis pad and using cannabis to get to sleep. This is a fantastic outcome for me. Have you ever thought of an iron transfusion?

Unfortunately, my doctor will not authorize me an iron transfusion.

Kathy

Hello folks I'm new to the forum here and very curious. I see a lot of posts about raising iron (ferritin) levels, some quite drastically. But I dont see any mention of whether it's made a difference to your RLS or not? I had low levels (28) but am taking iron supplements and last test it was within normal range. Still on the low side but "normal". Are you all of the mind that raising iron substantially will help or stop the RLS? Can any of you share whether raising iron has had any affect on your RLS? Thanks.