Hi, Does anyone on here suffer with fibromyalgia and restless legs/ periodic movement of limbs?

[Delilah162]

Hi All, I’m new to this group 😊.Just after some tips on what helps if like me you pace around the house most of the night and can’t keep still from early evening. I find all the movement really exacerbates my fibromyalgia pain 😩. Any suggestions welcome 😊

[CheetieCat]

Hi Delilah162

Stretching exercises and massaging magnesium spray/oil helps mine. Also used a vibration plate for years, find it really helps my legs, though I know some people can't tolerate them it's my absolute go to.

Heat, compression socks, epsom salt baths. Some swear by tonic water for the quinine (sp), never tried it myself though. Hope you find some relief, RLS is horrible

[Delilah162 in reply to CheetieCat]

Ah thank you! I take magnesium but not thought of the sprays. I’ve not got a bath so my husband has booked me a flotation tank thing think it’s for an hour that has salts and minerals in. I’m actually in hospital wired up having a sleep study tonight they had a cancellation. Hoping after this and filming me all night they will see what I’m like all night. Thank you for your advice that’s helpful 😊

[CheetieCat in reply to Delilah162]

You're welcome, be interesting to hear how your sleep study goes. Any tips from that would be appreciated x

[Delilah162 in reply to CheetieCat]

I’m still wide awake flailing about the bed and then pacing up and down the ward. At least they can’t argue I don’t sleep! Yes will let you know. Thanks again ☺️x

[Midori in reply to CheetieCat]

I take Tonic water and Bitter Lemon ( separately) They both have a small amount of Quinine, and it definitely helps me with my cramps. My doctor told me about Tonic water years ago and I have used it ever since (bitter Lemon makes a change!) My cramps are nearly always in my feet and calf muscles, but I also get it in my hands sometimes, when reading a book in bed the hand holding the book cramps. Happen when I crochet too!

Cheers, Midori.

[CheetieCat in reply to Midori]

Same for me, might give the tonic water and bitter lemon a go! Calf muscles are like bricks. Haven't done any crocheting for ages for same reason, anything you have to grip for any length of time is just ouchy 😩

[nuttall1215]

I agree Magnesium Sprays help. I also use a warming arnica cream that works as well. Usually ends up being a combination of these and Deep Heat.

[Pthom50]

I can surely relate as I have restless legs most nights! The lack of sleep causes so many problems. I have IBS which runs alongside the Fibromyalgia. (I also have acute sciatica and arthritis in my feet and partway up my legs). I have had bad circulation in my feet for years and think this contributes to the restless legs. If walking around for a while doesn't take it away I find a cup of tea sitting up in bed seems to ease it. My feet are also very hot at this time and I have ice slippers which are kept in the fridge or freezer as heat would make them more restless. Both of these things help but sometimes I just have to put up with it! Think there is medication that can help but there's very little I can take as am sensitive to most tablets. Worth an ask at the docs if medication doesn't bother you. Good luck

[CheetieCat in reply to Pthom50]

Vicks on the soles of the feet can be helpful or a peppermint spray or lotion. Just got a lovely one from the body shop half price that I'm really liking, my feet are always on fire.

[AmyMac5]

There is an excellent Health Unlocked forum specifically for Restless Leg Syndrome (RLS)

healthunlocked.com/rlsuk

Some very knowledgeable folk on there and many shared experiences. GPs are not taught about RLS and many know little or nothing about it, eg quinine can help cramps but does nothing for RLS. In the US in particular there has been a change in how to approach treating it and the UK is slow to learn about this. You'll find a lot of info on the forum about medication to treat it, the role of brain iron levels, medications that may make it worse (such as amitriptyline which is often prescribed for fibro), possible triggers in food and lifestyle, gadgets that may help etc.

I have both fibromyalgia and RLS, the restless legs are pretty much under control thanks to guidance on ditching the prescribed dopamine agonist after only one night, upping my ferritin levels over a number of months and taking a small dose of codeine at bedtime.

[Delilah162 in reply to AmyMac5]

Ah thanks, yeh I’m in there too! Fab information and very knowledgeable peeps. My rls is just making my muscle/joint stiffness and ache worse. I’ve just come off pramipexole neurologist debating iron infusion as ferritin very low, codeine not touching me! Sick of if all tbh. Thanks for reacting out 😊

[AmyMac5]

Ah, glad to hear you'd already found it! I only took pramipexole for one night, found the RLS forum the next day and stopped it there and then. Well done on the prami, incredibly difficult to come off by all accounts, so adding that on top of fibro must be terribly hard on you.

I was already on co-codamol at night for pain and would get to sleep but the RLS would break through about 4am and bother me off and on til morning. After taking iron bisglycinate for about ten weeks I started to sleep through that point, I still take enough iron to keep the ferritin levels up and keep it at bay.

Good to hear that your neurologist is considering an iron infusion, hope it goes ahead and that it does the trick, maybe then allowing the codeine to work better too. Incidentally, I switched from co-codamol to codeine at one point but found that it wasn't as effective without the paracetamol element.

[Delilah162 in reply to AmyMac5]

Sounds like you had a lucky escape! I was on it for just under a year, I’m glad to be off it but struggling to cope with how I am now. The codeine isn’t cutting it, I took 60mgs at half 9 and I’m kicking like a goodun now at half 1! Plus I can still feel my shoulders neck and arm pain. I wonder really whether to see about getting referred to a pain clinic so many things make the rls worse you’d hope honey would know more about that.

Sounds like you’ve done really well getting to grips with your situation and have a good management plan there. 🤩 x

[AmyMac5 in reply to Delilah162]

I was very fortunate to both avoid going down the pramipexole route and also find that I'm one of those lucky enough to have the RLS controlled by easily available iron therapy and a low dose opioid.

I see you are getting some feedback over on the RLS forum, while it may take a while to get there, I do hope you find what works for you.

[Delilah162 in reply to AmyMac5]

Ah you’ve done well there then. I think my coeliac hinders the iron absorption for sure.

I took 60mg of codeine last night and it helped for 3 hours then I was off again!

The rls forum is brilliant so very knowledgeable peeps on there. ☺️x

[saj01]

Hi ... I had restless legs quite some time ago and started to eat a banana before bed... was told the potassium in bananas helps... strangely enough it worked for me. I did try a magnesium spray before that but it makes my skin itch. I also take extra magnesium daily... not too much as it can have a laxative effect!. It's worth a try.

Stella

[Al10]

Are you getting enough B vitamins in your diet? And if you have tummy issues, are you absorbing the vits etc? Poor diet is no friend to the Fibro!

Also, if you are prone to restless legs, alcohol will likely make it worse as it seems to deplete your B vit levels.

Getting overtired tends to make it worse. Hopefully if you can sort your sleep issues the legs will naturally improve too?

I believe there are meds these days but if you already have to take meds, think about whether you want to keep gobbling more? All will have their downsides too? Best to look carefully at the pros and cons, Good luck!

[Delilah162 in reply to Al10]

Yes I have a varied healthy diet. I take supplements, absorption is an issue as I am coeliac and have ins too.

It’s the restless legs that need sorting as they stop me from sleeping. Hopefully I will eventually get the treatment I need! 🤪

[Al10 in reply to Delilah162]

Very tricky keeping on top of nutrition needs with coeliac. So difficult too not to make mistakes. I note Vegan products took over from Gluten Free after the lockdown. As though it was a brand new world? Who could have expected Soya milk to suddenly be made on lines with Oat milk etc?

I sympathise with how RLS stops you sleeping. You get them when you are tired and then the legs stop you sleeping. I find just being around folks with restless legs disturbing🤭.

Interesting to see what the Drs suggest. Meds might be the way at least for a while to break the cycle?

By ins, do you mean insomnia? I've been theorising that it is a learned habit. Fearing to sleep at some point in our lives? Nightmares? lack of safety? Or over sleep the alarm even? I had to figure that out and once I did I could understand I was now safe to sleep and let go of that damaging but unconscious habit. Hope you get sorted soon.💤

[Rama48]

I feel you! I suffer from the same thing for years and now is worse with my fibromyalgia but never went to doctor to ask for help because of my severe depression….

[Delilah162 in reply to Rama48]

Ah I’m sorry to hear that 🙁.