Restless Legs Syndrome

[williamghenry]

I have had RLS for a long time I get very little sleep and I am fairly lucky I can survive for most days without a lot of sleep I tried pregabalin which hasn't helped I had major surgery in January 2023 Since then my RLS Symptoms have increased dramatically I have moved to sheltered accommodation to have medical support available My Iron levels are very low and I am on Folic Acid and Ferrous Sulphate I am due to have another blood test shortly to see if my iron levels have improved

Good luck to everyone suffering from RLS and praying for medication that may help RLS sufferers

[Madlegs1]

Sorry for your pain.

What painkillers were you on for and after the major surgery?

Very often ,when these are stopped, one will experience severe withdrawals, of which RLS is a biggie.

Apart from the usual RLS protocols ( see any of Sue Johnson answers). It will need time to get over these withdrawal symptoms.

You could ask the operating team/ anesthesiologist for meds to help you cope.

Good luck.

[williamghenry in reply to Madlegs1]

I am on Paracetamol after the operation which I take two four times daily I have registered with a new surgery and I am going to ask the GP for an Iron Transfusion

My dosage of Pregabalin was 25 mg One Capsule TWICE a day

Thank you

Kind regards

William Henry

[funkyday in reply to williamghenry]

That is an incredibly low dose of pregabalin! Most tablets start at 75 mg. and I am currently taking 150 mg a night with a half tablet of Tramadol, the whole tablet if it is really bad.

[Opie__ in reply to Madlegs1]

With my cancer diagnosis last year, I had several surgeries fairly close together. I suffered with terrible RL during 3rd surgery. My recent surgery, I spoke with anesthesiologist right before and he was very hepful and understanding. Don't know exactly what he changed, he did have nurse remove a nausea patch before my surgery. When I woke up, the first thing I said was "my RL's aren't bothering me". The nurse said no, you did really well. My RL's are under control for first time in years. I started seeing a neurologist several months ago and he has been a tremendous help.

[SueJohnson]

I am so sorry for your suffering. Can you get an iron infusion to more quickly bring your ferritin up?

[Joolsg]

I'm so sorry to hear this. Please ask your GP to arrange an iron infusion. Many UK hospitals now do them.The Royal Cornwall in Truro & St George's in Tooting are familiar with iron infusions for RLS.

ncbi.nlm.nih.gov/pmc/articl...

Are you on any other meds apart from pregabalin? What dose are you on and when do you take it?

[Niamhcaiden]

apparently if your iron levels are low it doesn’t help matters a friend of mine has iron injections and they really help with the RLS ! I take pramipexole for mine and they do help but block up my nose, gain something and lose something else.

Good luck it’s so horrible having this problem Xx

[Munroist in reply to Niamhcaiden]

Apparently they help 60% of people so it’s not guaranteed to help but if you are suffering I’d say definitely worth a try.

[Bramble2000]

I’m sorry you read you are suffering like this. I hope they are looking after you well in your accommodation. X

[NormAnnT2]

hopefully, you have been advised to take vitamin C along with the first sulfate for a better absorption. Typically 200 mg is what I was recommended. Also, if you’re having difficulty improving the level of iron by the oral route, you should perhaps discuss intravenous iron infusions with your healthcare provider, which can be extremely extremely effective in augmenting your response to the medication you’re taking along with the iron!

[topaz70]

Hi williamhenry, I have been on Pregabalin for 2 years. I take 250mg at night and most of the time they work very well. I sleep for about 6 hours. I don't wake up because of restless legs. I am fortunate that they work for me. My restless legs were active 22 hours a day before I started Pregabalin. I hope you find something to help you.