ferratin

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.]

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peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: ferratin

Postby peanut1 » Mon Feb 20, 2017 3:14 am

For close to 8 months, I slept like a baby with no medications save for when I missed an iron pill or ate something I shouldn't have eaten. All I did was increase the liver/kidney to 4 x per week and I was on a strict diet with no sugar, grain or excitoxins. The cholesterol went up, but the doctor said just don't eat it every day and take fish oil. I took bloodbuilder 2 x per day and another iron at night. Unfortunately, the RLS is rearing it's head again. I'm not sure why the RLS decided to come back last week. I have been under some stress and I'm wondering if the stress level is impacting my ferratin level so I'm going back to meditation which helps me rest better when I get no sleep anyway. Deep in my bones I believe there is something than can either help me manage this or cure it without meds (save for an as needed basis) and I'm going to keep trying and picking myself up and trying again. I felt the same way with the chronic back pain I had for 20 years and now I'm pretty much pain free as of this year--thanks to Hanna Somatics. I keep you posted on this journey. Clearly for me, and I can't speak for anyone else, MY RLS has something to do with the processing of iron .

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: ferratin

Postby Noreserve » Mon Feb 20, 2017 4:41 am

Yes, I am in the same boat with RLS ramping up. Like you my goal is to not need to take iron every night. I believe RLS researchers are pretty much in agreement that our brains are poor managers of iron and are literally "anemic" in certain parts such as the substana nigra and putamen. Those are the parts of the brain where they found people with RLS to have lousy d2 receptors and hence lousy dopamine transport. They further believe that the receptors are lousy due in large part to that lack of brain iron. The latest thinking is that iron is better absorbed (especially iron pills) when a day or two is put in between doses. Well I can't always do two days but I always put 24 hours in between. As I have said before the only type of iron that works for me is the ferrous bisglycinate. I take 25mg when the RLS acts up and my stomach has to be empty. ALWAYS stops the RLS within one hour, but only lasts for one night. I recently purchased the 45mg ferrous bisglycinate patch and although it doesn't pack as much of a punch initially I feel although I sleep longer and deeper with it. I rarely eat red meat anymore and find that my IBS is best when I eat raw food, including raw fish and like you easy on the grains and sugar. A big RLS trigger for me is a late and large evening meal. Pleeeeeeeeze keep me posted on you. Xx

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: ferratin

Postby peanut1 » Thu Feb 23, 2017 6:02 am

Well I have to have the organ meat at least 3 or 4 times a week, but I wouldn't do that for someone with heart issues. I've also upped the non heme iron. tonight I'm really frustrated as I took my pills and I'm up an hour or 2 later so when I get in this state the pills do not work even if I'm only getting 3 hours a night. It's like when the RLS starts getting better the pills work better--it's not supposed to work that way!!!! I agree that this is an ion issue, but my thing is why would my iron diet work for 8 months and then suddenly not work at all? I can see where maybe it would come back to some extent, but to have it go to hell in a handbasket and not have the pills or anything not work at all? Doesn't make sense.

I hear they are going gene manipulation to prevent PTSD and I don't know why they can't do that with RLS. Likewise, I don't know why they can get a pill to help work the iron receptors better and or there has to be something out there that can help. The key is, I've learned, when the sleep goes to hell, try to keep calm. I do a lot of meditation when I can't sleep and it helps a lot. It helps keep me going. Likewise, my job is open to disabilities and I can ask them for me to take 1 hour a day to meditate throughout the day and make up the time and that can help me keep going at work and keep my job. So you learn all these tricks of the trade. I wish I had better news for you. I would be scared to miss one iron a day as I would get 0 hours that night. How do you do it?

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: ferratin

Postby peanut1 » Thu Feb 23, 2017 6:05 am

There has to be a cure for the iron disorder we have even if it's surgery. It doesn't sound like it has to be that complicated.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: ferratin

Postby Noreserve » Thu Feb 23, 2017 6:41 am

Are you still using the Floravital which is ferrous gluconate? Not a very bioavailable form. [DELETED] I'm amazed that the gluconate ever worked for you. It's similar to ferrous sulfate which never stopped the RLS for me. [DELETED]

Why is your RLS so bad lately? Did you start a new medication? [DELETED]

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Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: ferratin

Postby Noreserve » Thu Feb 23, 2017 6:43 am

I mean vitamin C isn't necessary with ferrous bisglycinate. Any other type of iron it's probably a good idea.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: ferratin

Postby Noreserve » Thu Feb 23, 2017 11:05 pm

You deleted the names of the substances known to make RLS worse and most of which are listed on Dr. B's website, however somewhat buried. It was all of 10 substances yet incredibly important to know and helped Qxy tremendously as he stated. Very sad!

SLEEPY ANGEL
Posts: 51
Joined: Fri Feb 10, 2017 4:34 pm

Re: ferratin

Postby SLEEPY ANGEL » Fri Mar 10, 2017 3:59 pm

peanut1---

I just happened to read your Feb 23 post where you mentioned research that is being done on helping PTSD and even other problems... wondering why there couldn't be some help for OUR rls sufferers. I believe it has to be that the squeaky wheel gets the oil. Not enough people even KNOW we are out here! Nor does the general public know too much about rls. In another post I talked about how my friends don't have a clue about WHAT it is all about. If researchers had more of an idea about how our lives are messed up once we get rls, MAYBE more help would be coming down he pike. We can only HOPE for that...

badnights
Moderator
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Location: Northwest Territories, Canada

Re: ferratin

Postby badnights » Sun Mar 12, 2017 6:21 am

That's why I shoot the Foundation a bit of money whenever I can. They're the only organization I know of doing the two things that absolutely need to be done: spreading awareness of this disease (in the medical community and the broader world), and funneling our donations into research grants. The grants not only get much-needed research funded, they also can induce young researchers to choose WED as topic that they might stick with for a lifetime of research.
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: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: ferratin

Postby peanut1 » Tue Mar 14, 2017 3:33 am

The sleep has gotten better again. so I think I'm dealing with an iron disorder and when it gets really severe and nothing works (including the meds) I'm dealing with the complex PTSD. The only thing that has helped with the complex PTSD is tracking, meditating and analyzing my night time dreams and doing lots of meditation. So I'm back to eating 2 8 oz pieces of liver 3X per week and trying to get the non heme iron up too. I'm also taking high quality enzymes with the iron and liver or turkey as I alternate between the 2. The enzymes is a new thing.

Floravital works better for me than chelated iron. However, it will pump you up so I don't take it right before bed. I also like the bloodbuilder a lot.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: ferratin

Postby peanut1 » Tue Mar 14, 2017 3:36 am

Badnights,

I feel like the research is a bit behind the times. If I were one of the doctors I would take another study or breakthrough (such as the PTSD one I listed) and see if it wasn't doable for the RLS. It doesn't take a rocket scientist to know that for many (if not the majority of us) it's an iron disorder vs. a neurological disorder.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: ferratin

Postby peanut1 » Tue Mar 14, 2017 3:49 am

Here is the article. It's more about manipulating the gene to prevent PTSD. Why can't we look at this from an RLS standpoint?

https://www.sciencedaily.com/releases/2 ... 131224.htm

SLEEPY ANGEL
Posts: 51
Joined: Fri Feb 10, 2017 4:34 pm

Re: ferratin

Postby SLEEPY ANGEL » Tue Mar 14, 2017 7:07 pm

peanut1---
I read the study and it sounds wonderful as far as treating PTSD and I think that if some researchers could be encouraged somehow to work on how to find a way to help those with RLS, it would be fabulous! Not to sound "negative" about it, but it might be very easy for researchers to feel compassion
Re. PTSD sufferers and to want to help them; but do researchers even have an idea as to what the suffering is like for some of us? I do wonder....
Gee, it would be great if a person with RLS was ALSO a researcher, and thus would PUSH for results in the Lab, ETC! Just dreaming.

ViewsAskew
Moderator
Posts: 14796
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: ferratin

Postby ViewsAskew » Tue Mar 14, 2017 10:05 pm

SLEEPY ANGEL wrote:peanut1---
I read the study and it sounds wonderful as far as treating PTSD and I think that if some researchers could be encouraged somehow to work on how to find a way to help those with RLS, it would be fabulous! Not to sound "negative" about it, but it might be very easy for researchers to feel compassion
Re. PTSD sufferers and to want to help them; but do researchers even have an idea as to what the suffering is like for some of us? I do wonder....
Gee, it would be great if a person with RLS was ALSO a researcher, and thus would PUSH for results in the Lab, ETC! Just dreaming.


Dr Rye is a researcher and he DOES have RLS!!!! He is also a doctor - and he would be a top pick if I lived in Georgia (he teaches at Emory).
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.

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: ferratin

Postby Rustsmith » Tue Mar 14, 2017 11:20 pm

At the last webinar, Dr Phillip Becker (in Dallas) mentioned that although he does not have RLS, his wife does and so do most of his in-laws. Although it isn't quite the same thing as having a conditions, I can attest that living with someone with a severe neurological disorder does elevate your understanding of what it is like.
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.


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