I'm suffering quite badly with rls plus nerve pain in whole of one leg as well.
Consequently hardly any sleep.. driving me crazy.
I'm trying my hardest to research everything to do with restless legs.
IV been diagnosed with low ferritin levels..but apparently the level is only the results from one laboratory.. I've read this can vary.
Also..if iron supplements aren't working..it could mean that iron is not getting absorbed properly due to a gut bacteria or SIDO.. which can be shown up by food intolerance test to see what is causing all the inflammation in one's body.
Interesting you should mention that. One of the speakers at yesterday’s AGM conference talked about Yin Yoga exercises as a way of helping.
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Any other interesting gems from the AGM? I am too far away to attend. Do you know if a summary gets published later?
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I would ask Daragh or Kaarina about whether a summary will be given.
We had 3 workshops. Yin Yoga, mindfulness, and a neurologist’s perspective on treatment. We were also introduced to different studies that are about to get underway. One is about RLS and anxiety, one is a mindfulfulness in connection with those on kidney dialysis (although the guys who presented this focuses on those on dialysis, he is also interested to see if mindfulness exercises would help those with RLS), and I regrettably forgot the other one.
On a more personal note:
The kidney dialysis guy mentioned the word “psychosomatic” (in his defense, not as a cause, but as a way of explaining the relationship between body and mind). Having said that, I did say to myself “awww sh*t” (you’re welcome guys) when he mentioned that. I was hoping to get away from that word by leaving Oslo! Apparently, no such luck! I’m surrounded!
I know in "chronic pain world" which I spend a LOT of time with in groups, "mindfulness" is a bad word. IT is one of those buzz words, and phrases like "Embrace the pain" will send me over the edge. How on earth could the kidney dialysis guy use the word psychosomatic in relation to RLS. it is well known in RLS land, that dialysis is a fairly common cause for RLS. It is in NO WAY all in their heads, like it is not for any of us. Did you find the meeting worth the trip?
ha ha yes jess i was at the agm too , from lunchtime , saw one off them showing someone a simple exercise by the table with the rls leaflets , anyway my rls was bad in the night so tried it and well it worked , maybe just luck ?
I’m glad it worked for you! My gym offers a yin yoga class, so I’m going to start going to those. Maybe I can get my PT to help me with those as well. If she can (and I find out anything new) I’ll let you know
ha ha thats a long way off ! sorry guess qe should anot her time have a social whefe we can talk too each other and help with advice and tips and how we cope ! my rls is bad all ready tonight ! sorry my tablet is doing odd things ,hence the typos !
I increased serum ferritin from 65 to 204 over a 2 year period. I didn’t notice any improvement until 4/5 months ago. My levels 5 months ago were 140. I did this by taking ferrous bisglycinate everyOTHER night orally and in patch form ( patchMD in the USA are excellent & post to UK). No tummy problems.
I also went vegan 5 months ago.
I am on heavy meds but have been able to reduce pregabalin down from 150 to 100mg. Still on 25mg of OxyContin as well.
Now I don’t know if it’s the vegan diet or the iron that’s improved my RLS. I cheated all day yesterday with food and there was no flare up last night so I’m convinced it’s the iron.
In the USA, the experts are sure there is a link with iron and studies are being done. Here in UK it’s not considered very important- as long as your levels are near 70 the view is very much that iron will not help.
There have been several on this forum who have had iron infusions & their RLS has disappeared.
I think it’s another of those “remedies “ which helps some but not all.
Ferrous bisglycinate patches are definitely worth trying.
I am most recently on the Paleo diet. This seems like a sane way for anybody. I sincerely believe this to be true but it has not changed the horrific RLS symptoms. Since it is not helping I always want to go back to my other eating life. So far hanging in but by a thread, Many of us on this site actually have what I have recently read as "Malignant RLS." SUCKS, right? Auntie Sioux
My last iron test was 120 but I still take iron bisglycinate and if I don’t take it for 3 or 4 days I am in trouble with legs and arms, so it proves that decent levels of iron are still not enough without taking more iron.
I think youre on the right track with your thinking of food intolerances and inflammation. I have found that raised blood sugar bring on my rls, so I have cut out sugar and any food high in refined sugar. Also I find that too much deep fried food close t bedtime bring on mild symptoms.
Another of my triggers is potassium sorbate food preservative. Sorbates have a reputation for causing nerve related problems (check out fedup.com.au).
My theory is that sugar and the potassium sorbate (E202) cause inflammation in the nerve receptora. Vit b12 has anti inflammatory properties, and the fact that I take supplements of that for vascular health may be helping.
Not being able to sleep is awful to say the least. I had months of it at one stage until they got my pain under control. Now I have fatigue and find it hard to stay awake sometimes.
I have many chronic health problems among RLS, OA, joint hypermobility syndrome and I found a gluten free diet and lactose free has made my life so much better that I can now eat, don't suffer severe nausea and have reasonable gastrointestinal function.
I hope you too can have some success in trying your luck by limiting certain food groups.
I have noticed that sugar makes RLS worse. This includes fruit as well as artificial sweetener. I also have an increase of RLS with complex carbohydrates. This is especially true if I consume them after 4 in the afternoon. I am going to try not eating after 4 pm and see what that does.
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RLS and Iron
Intestinal upset (diarrhea, tiredness, slight nausea) from ferrous sulfate?
Update from Restlessstoz! Augmentation and Iron infusion
Iron in the Brain not in the Blood
Restless body and legs
