RLS Nightmare

[soundofmetal]

I am so tired of my RLS, it's really getting me down. I'm thinking of having an iron infusion, can anyone recommend this?

[Hidden]

Certainly IV iron infusion is a recommended treatment for RLS.

see this link

sciencedirect.com

[DicCarlson]

Start at the beginning with a good iron panel, blood tests - generally in the AM, fasting. Read more from Johns Hopkins...

hopkinsmedicine.org/neurolo...

[WideBody]

I got an infusion, best thing that ever happened for my RLS. It does start with a morning fasted full iron panel. Ferritin should be above 100 and Transferrin Saturation Percentage should be above 35%. Iron levels are very important for RLS. Read the links from Manerva and DicCarlson.

[Hidden in reply to WideBody]

Just to clarify,

if ferritin is below 75 then it is possible to raise it by taking an oral iron supplement. It is possible to raise it to 100 at least this way.

If ferritin is more than 75 then it's not easy to raise it further orally, an infusion is needed.

However, if ferritin is below 100 or even below 75 it doesn't mean you can't have an infusion, it just means that it's more unlikely anybody will agree to giving you one.

If transferrin saturation (TSAT) is low this suggests that there may be iron deficiency anaemia. The threshold seems to vary according to which source you look at It seems to between 15% and 25%. A TSAT of any value below 35% then doesn't mean you can't have an infusion. In fact the opposite, the lower TSAT the greater the need for iron therapy.

However if TSAT is too high (45-50% or more) the more dangerous it becomes to have an imfusion as it could cause iron overload.

[HappyGreenBean in reply to WideBody]

Hey, I realise this is an old thread but I was wondering where you got your infusion done? And, if you're still finding relief.

[WideBody in reply to HappyGreenBean]

I got my infusion at the hospital, it was iron sucrose. 200mg * 5. So I had to go to the hospital for about 1 hour each time. That was in Aug 2019. I have since been doing oral supplementation. First was liquid Ferrous Sulfate now it's ferrous bisglysinate, I think I might be going back to Ferrous Sulfate after my next test (Note to self: need to schedule my blood test). I get tested every 4-6 months. My goal is ferritin of 200. It has been as high as 300 and as low as 156.

Keeping a stable ferritin is REALLY tough for me. I absolutely do know the difference.

Humble brag. I have stood on top of Mt. Hood with a Ferritin of 30. I could barely breath and had a hard time talking. I have also been on top of Mt. Hood with a Ferritin of 200, it was a walk in the park (solo), the fastest I ever went up and down.

If your iron is low as mine for as long as mine an infusion certainly helped my RLS. But that was only the beginning. The first thing I noticed was my fingernails. The first thing everyone else noticed was the color of my skin, (Strange: I was very red skinned compared to the rest of the family).

My only wish is I would have/should have gotten an infusion of Injectafer when 1) I was first diagnosed as anemic or 2) when I was first diagnosed with RLS. I would have gotten 10-15 years of my life back.

Don't get me going on Dopamine Agonist drugs! Good luck, please let us know how you get on.

Merry Christmas!

[HappyGreenBean in reply to WideBody]

Ah, thank you so much for your detailed reply!

I don't qualify for infusions at the hospital sadly as I'm not anemic. I was thinking of going to a priv clinic to get a IM/IV iron dose because I don't qualify. My ferritin is around 32 and hasn't budged in a couple of years no matter how much oral supplementation I take (ferrous sulphate 400mg pd) but also my stomach can no longer handle to oral supplements. So, I'm sure it'll drop below 32 soon enough.

Nah, that's not a brag, that's awesome! I'm mighty impressed. I hope you end up doing more of what you clearly enjoy in the new year.

I completely understand, I can feel when I'm struggling too. My GP doesn't think I have an issue though and doesn't even really regard RLS as serious. I'm finding it frustrating and exhausting just dealing with them. You get treated like you're burden. The latest thing is I'm 'old' so this is why it's happening. Sigh. Honestly, I wish they educated GPs about RLS/sleep disordered movements/etc. Oh well, I suppose they can't know everything!

Merry Christmas to you too and a very happy new year!

[Birdland]

I get iron infusions regularly. They have definitely helped my RLS symptoms but they are not a miracle cure.