Raising iron levels

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
yawny
Posts: 165
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Re: Raising iron levels

Postby yawny » Tue Apr 04, 2017 12:31 am

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

Rustsmith
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Re: Raising iron levels

Postby Rustsmith » Tue Apr 04, 2017 2:14 am

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!!! :lol:
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Raising iron levels

Postby ViewsAskew » Tue Apr 04, 2017 2:52 am

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.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Raising iron levels

Postby Polar Bear » Tue Apr 04, 2017 9:24 am

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.)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Raising iron levels

Postby ViewsAskew » Tue Apr 04, 2017 7:15 pm

yeah, I should have said, those of you over 50 who watched 1970s American sitcoms!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

boots
Posts: 1
Joined: Tue Apr 04, 2017 12:45 am

Re: Raising iron levels

Postby boots » Wed Apr 05, 2017 1:51 am

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.

ViewsAskew
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Re: Raising iron levels

Postby ViewsAskew » Wed Apr 05, 2017 3:30 am

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.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
Posts: 320
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Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Wed Apr 05, 2017 9:51 am

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.

Polar Bear
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Re: Raising iron levels

Postby Polar Bear » Wed Apr 05, 2017 12:40 pm

:wave: Boots - thank you for your heart warming words and for taking time to do so.
Happy Birthday
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Raising iron levels

Postby yawny » Wed Apr 05, 2017 4:25 pm

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.

badnights
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Re: Raising iron levels

Postby badnights » Thu Apr 06, 2017 8:55 am

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!)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

peanut1
Posts: 273
Joined: Sat Jun 04, 2011 8:06 am

Re: Raising iron levels

Postby peanut1 » Tue Apr 18, 2017 4:02 am

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

legsbestill
Posts: 320
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Wed Apr 19, 2017 12:11 am

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?

peanut1
Posts: 273
Joined: Sat Jun 04, 2011 8:06 am

Re: Raising iron levels

Postby peanut1 » Wed Apr 19, 2017 2:58 pm

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

Kathy

steve7
Posts: 4
Joined: Tue May 02, 2017 5:16 pm

Re: Raising iron levels

Postby steve7 » Wed May 03, 2017 1:40 am

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.


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