Fibromyalgia and restless legs

[David_36]

My mum is experiencing restless legs and arms at night. She is suffering with fibromyalgia, a chronic nerve pain condition. She's taking gabapentin and mirtazapine at night. Her mirtazapine has been increased - wondered if this was the cause? Or if magnesium tablets would help calm nerves.

[Joolsg]

Yes. All anti depressants cause or worsen RLS. There are only 2/3 that do not. Trazodone is mentioned as a safe alternative.

[SMPR in reply to Joolsg]

I curse the day I was prescribed Citalapram after a bereavement. I started having RLS, I took myself off the Citalapram thinking that the RLS would stop but it stayed with me and got worse over the years. I now have in my arms and chest aswell as my legs. I'm dreading the days when I become less mobile. I'm not sure how I will be able to cope. With restless legs you can try and walk it off, with arms and chest you can't.

[Joolsg in reply to SMPR]

That’s classic augmentation. Like you, Ropinirole caused augmentation in my arms, chest and even my hands & face.

I slowly reduced from 4mg to 2mg. It then stabilised for about 3 months but started worsening very soon.

I then reduced from 2mg to zero and it was hellish ( can’t sugar coat it).

I am now on OxyContin and medical cannabis and although I still have severe RLS, it’s only in my legs and only late evening, and in the night.

I hope you manage to get off Ropinirole- the slower the better. 0.25mg every 2 weeks is the best way to do it and use a strong pain killer like tramadol or OxyContin to deal with the severe withdrawal that happens for 2 weeks after the last dose.

It seems Kings College hospital is unusual in that Prof Chaudhuri refuses to prescribe opioid meds- he says it’s because he only sees patients ‘remotely’ after the first appointment and RLS opioid meds need monitoring closely on a monthly basis. Weird because dopamine agonists are far more dangerous with more severe side effects.The old NHS postcode lottery.

[SMPR in reply to Joolsg]

Hi there, thank you for your advice and encouragement, hopefully I'll get there soon. I'm determined to come off Ropinirole, it dosent help me anymore. I've so far reduced from 3mg to 2mg but I think I may need to ask if I can take something alongside the Ropinirole, as I reduce further, as its becoming more difficult. I have a telephone appointment with the Neurologist coming up in April, providing its not cancelled, so I think, I will keep on the 2mg till then, and ask him if I could take something else, to help me wean off completely, and for help in the couple of weeks after taking the last dose. So good to hear that you managed to wean yourself off Ropinirole. I know it couldn't of been easy. Thank you. 😊

[Joolsg in reply to SMPR]

You may have to print off some info to prove how difficult withdrawal can be. Most UK doctors & neurologists have no idea it’s more difficult than getting off heroin of crystal meth. My GP advised me to drink milk as I broke down sobbing for help!!!!

Luckily my MS neurologist realised how bad it was and told my GP to prescribe Tramadol to get me through withdrawal (50mg every 4 hours during the worst days).

Fingers crossed 🤞

[SMPR in reply to Joolsg]

Thank you, I will do that. I can't do it if I haven' got a back up. My GP wants me to come off Ropinirole completely before she will give me another medication.I've also broken down in the past in the surgery with sheer frustration, when it was suggested, that I might like to try Yoga! I'm lucky I got another referral.

[Jimbo77]

Hi David. I think it’s also good to know that taking magnesium and Gabapentin together can lessen the effectiveness of the Gabapentin. Just a heads up 😊

[David_36 in reply to Jimbo77]

Thanks, yes I read that it reduces the effect of gabapentin if taken together. It seems to be ok if you take magnesium 3-4 hours before the gabapentin dose. We shall see.

[Hidden]

Oh dear God yes. My GP tried me on Mirtazapine TWICE - both times it took two to three days until I was ready to pull my legs off and club myself unconscious with them. Antidepressants can be very hard on people with RLS.

[hudson48]

You can try almost. Any of the things suggested but I have found they all differ to each person and it doesn’t last I have tried so many

[Hidden]

As others say mirtazapine makes RLS worse. I'm afraid that the usual antidepressants given for fibro pain i.e. SSRI's or amitriptyline both make RLS worse.

Jimbo is correct that taking magnesium and gabapentin at the same time the magnesium can interfere withe gabapentin.

However if your mum takes them 3 hours or more apart, it should be OK.

Hopefully she is taking a sufficient dose of gabpentin, if it's not enough then it won't be effective.

In addition iron has more influence on RLS than magnesium, if your mum has an iron deficiency then she may possibly benefit from taking iron.

She could ask her doctor to do blood tests for serum iron, transferrin, ferritin and haemoglobin. If her haemoglobin is low and/or ferritin below 75ug/L, then an oral iron supplement could help. If so note it could take 3 months to work.

[David_36 in reply to Hidden]

Thank you, she's had her dose doubled so hopefully she'll get some relief. The restless legs seem to have started when the mirtazapine dose was doubled, and it doesn't help her sleep either. She's been taking some iron liquid as it's supposed to work faster than tablets. 3 months is a long time!

[Hidden in reply to David_36]

Tablet or liquid iron, it's more effective to take it every two days, not daily.

Oral iron is notoriously difficult to absorb.

This is due to a hormone called hepcidin, which is released when iron is taken. It prevents any further iron being absorbed and does it for up to 24 hours.

Taking another dose the same day then, or even the next day isn't very effective. Strange as it sounds, more iron is absorbed by taking a dose every two days, than taking the same dose every day.

[Shumbah]

I am curious if she is on metformin ?

I had horrific nerve pain and suffered augmention type symptoms when I was on metformin

[Eryl]

The rls and fibromyalgia probably have the same cause, that is inflammation in the nerves. That could be due to diet, (too many carbs, leading to high blood sugar and hence insulin levels) intolerance of nightshades (aubergines, tomatoes, potatoes, chilli's) intolerance of artificial food additives (notably sorbates like E202) or possibly heavy metal poisoning.

[Lunawildwolf]

I also have fibromyalgia and find magnesium before bed does have a calming effect. Try and find a high dose capsule though.

[Lou9]

Just to add that I too was put on mirtazapine 15mg then 30mg and my RLS went through the roof and it spread up my body - just awful.