Iron infusion rls

[Dasymoo]

I am in hospital at this minute with chronic constipation with the tramadoli have asked for iron infusion they are thinking about it as my ferritin levels are 170.

Hopefully this will stop the rls.

[2everett]

Hi Dasymoo

Please read my posts.

I’ve been thinking - if ‘it’ was diet other people who live with you would have ‘it’ as well.

If ‘it’s’ iron why don’t we get

‘it’ in our fingers and neck or painful ears when lying down?

Please consider ‘it’s the brain’. It’s the equivalent of your/someone else’s ‘bad back’. The conscious minds way of suppressing bad stuff down into the unconscious/primitive/subconscious brain where it can’t do harm to you or others! It’s The conscious brains way of giving you something else to focus on other than the negative stuff you’ve been pushing down all your life. Everyone does it.

Have you ever felt a lump in your throat for no reason except that you were feeling stressed at the time? If yes - it’s your new lump in the throat. If you ‘think’ you’ve managed ‘it’ away - ‘it’ will be replaced by a new ‘ailment’.

Hope that helps.

[ookla in reply to 2everett]

What?!

If a family member in a house has a nut allergy and has a severe reaction from eating nuts, but everyone else in the family is fine after eating nuts, do you tell the one with the nut allergy: "It can't be the nuts, the other people who live with you are fine, go ahead, keep eating nuts"?

I find your blanket hypothesis, that RLS symptoms are merely the physical manifestation of repressed unconscious issues, to be rather marginalizing and offensive. Not everyone who suffers from RLS has "bad stuff" or "negative stuff" pushed down and needs to have their own brain inflict some g-d forsaken nightmare existence on them as a distraction... their own minds torturing them day after day, night after night, just as a diversion. I don't think so.

[2everett in reply to ookla]

I’m not trying to cause offence.

As far as I am aware iron deficiency isn’t an allergy.

[ookla in reply to 2everett]

"I’ve been thinking - if ‘it’ was diet other people who live with you would have ‘it’ as well." - 2everett

For some, RLS symptoms very well could be their body's response to a food they've eaten while other people may not suffer the same reaction - just like two people can eat nuts while only one has an adverse reaction.

Either you actually forgot what you just said hours ago by not paying attention to your own words or you disingenuously pretended not to know what I was referring to and tried to misdirect this conversation somewhere else. Neither is very interesting or worth pursuing. Good luck to you.

[2everett in reply to ookla]

I apologise if I have offended you in some way. I’m not sure what you are upset about.

I believed this forum was for people to share ideas, and in the absence of a ‘cure’ I’m merely sharing what I have discovered in the last week or so. I think it’s worth a try. What has anyone on here got to lose by giving it a whirl? I am trying it myself and am reporting the success I am experiencing. I’ve had ‘it’ for years and I am willing to try anything. I respectfully ask you to have a go for a few days.

[Hidden in reply to 2everett]

I've had it since infancy, I doubt if I was suppressing Trauma at that age - although I had taken a bad bang to the head. I've found a plant based and gluten free diet has my body at peace. I also take iron and a few anti-inflammatory supplements.

Differences have been found in the brain of a person suffering with RLS so it would take a lot of trauma to cause that level of physical changes so I am sure it would either be known to the person or family members who would tell them.

Your supposition doesn't take into account that many people suffering severely traumatic incidents and upbringing DON'T have RLS. Maybe a little more reading on this site is in order?

[Hidden in reply to Hidden]

Hi raffs. Your comments reinforce what I've learned from this forum: Different sources of relief for different folks. If anyone ever figures out how to put all these helpful components into a useful standard treatment plan he/she will have made a significant contribution to healthcare. Not something that frequently happens these days, IMO.

[ironbrain]

I have to say I'm not too sure about "all this iron". I mean, I probably don't doubt that iron is necessary for cells to produce dopamine and in some cases remedying low iron will cure RLS symptoms. But not everyone with low iron gets those RLS symptoms.

Having read the results got from iron infusion, back in earlier 2016, I decided to take a very large dose of iron (up to 180mg per day) in the bisglycinate form (Ferrochel) which I believed would be safe – the body would still only take up what it needed.

A couple of months later, I developed CNV/AMD in my left eye. You may wish to read these:

irondisorders.org/iron-cont...

medicalxpress.com/news/2015...

ncbi.nlm.nih.gov/pubmed/180...

In January this year, although I'd dropped my iron supplementation to 36mg per day, or 54mg if I exercised more vigorously, I developed CNV/AMD in my right eye.

As far as I've read, the main cause of RLS is too few post-synaptic dopamine receptors. How that comes about I'm sure I can't wait for research to reveal.

[Eryl in reply to ironbrain]

One difference between iron infusion and taking iron orally is that taking it orally can cause constipation for some people. I'm assuming that that is the reason for Dasymoo to ask for infusion.

[ironbrain in reply to Eryl]

The bisglycinate form doesn't and possibly some other forms don't, though the sulphate generally does. The infusion method I believe has the greatest positive result at relieving RLS.

hopkinsmedicine.org/neurolo...

[Dasymoo in reply to Eryl]

Yes it is.

[involuntarydancer in reply to ironbrain]

Interesting point, ironbrain. In our desire to see an improvement in our rls symptoms we may be a little cavalier about what the iron is doing to us generally. I have read that in rls patients iron levels tend to reduce spontaneously and consistently. Certainly my serum ferritin level reduces reliably if I don’t continuously take an iron supplement. I suppose there could still be iron accumulating in parts of our bodies however. Sorry to hear about your AMD. That’s not good.

[ironbrain in reply to involuntarydancer]

Another thing is though that they say iron tends to accumulate in the older brain. It all needs a whole lot of sorting out, it seems to me.

[involuntarydancer in reply to ironbrain]

Is that any older brain? Maybe that’s why some people experience an alleviation in their symptoms as they enter their 80s and 90s. My understanding was that us rlsers generally have insufficient iron in our brains.

[ironbrain in reply to involuntarydancer]

In my sixties on 6mg of ropinirole, I hope my RLS, already seeming to worsen year by year, doesn't become "elevated" if I reach my 80's or 90's.

I think it's maybe whether the iron in the brain is in or gets to the right place. But again, there's got to be something more than just a low iron problem – low iron does not give rise to RLS in everyone.

[Hidden in reply to involuntarydancer]

Hi everyone. This is just anecdotal but I want to share my recent experiences with rls and iron. I was diagnosed in May 2017 with rls. I was given pramipexole by my PCP/GP with no explanation of augmentation. I was not aware of all the intricacies re rls treatment until I joined this rls forum. About a week into the pramipexole I developed some leg swelling which I thought was a drug reaction, went to the ER and was told to stop the pram. I had already done that. Wanted to try and stay off meds til I learned more. Two weeks later saw my CPAP doc and he said have a ferritin level and explained I might do better with a higher 'normal' if it was low. I had it at my PCP's office; it was 62 (low) but she dismissed it as 'fine' and blew off the opinion from the sleep doctor. Still having rls sx but just living with it. I pushed the PCP to repeat a few months later, grudgingly she did and it was down to 48 where it stayed (verified by another ferritin done by a surgeon) in early Jan 2018. At that time I decided to start eating liver weekly as for other reasons (G.I. problems secondary to abdominal radiation in 1999) I did not want to try any iron supplements at that time. I don't like liver but faithfully ate 8 oz of beef liver every Monday and am still doing so. My new Endo did a ferritin in early April of this year and my level is up to 102. My rls sx are enough improved for me to feel much better but am continuing the weekly liver to hopefully raise my level enough to continue to improve rls sx. The only change I have made is eating the liver- resulting in higher ferritin and less rls. Absolutely not a scientific study but working for me. I am very grateful the Universe is giving me ideas that lessen my sx. I believe doubling my ferritin numbers in 3 months thru diet and significantly lowering rls sx is nothing to be sneezed at. I also believe it has possibly contributed to less brain fog and other cognitive sx. Can't say for sure because am also working on my thyroid problems which have been undertreated by my PCP for over a year. Finally found a good Endo who started me on T3 in early April and am also beginning to see positive changes with thyroid sx. Will have new tests including ferritin first week in June. Hope this info is helpful to someone. PS Don't eat a lot of meat but sticking with the liver!

[Hidden in reply to involuntarydancer]

My thinking also.

[Nora22 in reply to involuntarydancer]

I guess using iron to slow down/stop RLS can work for a while, especially to help get off medications. However, some feel that in general, iron gets eaten up in the system by inflammation, and that reducing the inflammation might leave enough iron in the body to stay okay. Reducing the inflammation might also relieve the RLS...

Here's the latest place I read about it: rlcure.com/eight-common-myt...