Restless Legs Syndrome
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Had enough

I’m just letting off steam, nobody else to talk to. I’ve been off work going on 4 months now, due to a knee injury. So, can’t take strong painkillers, supposed to rest knee but up and about every night with rls, so knee isn’t getting any better. Severe lack of sleep, not slept in my own bed all this time, as I can’t lay on my back in bed so on the recliner sofa, which isn’t as comfy as it sounds. Getting no support from my gp, but then again, I suppose there isn’t much they can do cos I can’t take painkillers. Also, put shit loads of weight on, (pregabalin)? I look horrendous, can’t exercise like I want cos of my knee, and also my back is worse, due to not walking properly, so basically I’m well and truly hooked with an f. My partner does his best bless him, but yeah, you can tell he’s had enough now. My daughter is about as sympathetic as a don’t know what, she is causing me some stress at the mo. So, that’s me, I’ve seriously had enough now, and knowing it’s only going to get worse, well, doesn’t bare thinking about. Moan over, thankyou.

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Leelee, you’re very welcome. Although that’s all we can do, I am afraid. Rant as much as you want - WE understand!

Too bad about the painkillers. And, yeah, I have read many more stories about pregabalin (and gabapentin) entailing weight gain.

Have dared to entertain the possibility to ask for a low dose of ropinirole? Don’t remember whether you were on a DA before, whether you augmented and , of so, how long it has been. I bring it up, because it may just help you through this recovery period needed for your knee injury.

Sending you strength and perseverence to cope with it all.

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Thankyou lottem, I’m really reluctant to try another DA, they scare the crap out of me now, so think I will try and persevere. I don’t think my gp,s realise the weight gain is the pregabalin either, they talk to you like your a 5 year old not 50 year old, I find them frustrating.

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What is a DA?

I'm new to this-have had RLS for afew weeks and am on ropinirole -low dose and am taking magnesium citrate. Why won't GPs' believe us that it is unbearable? It feels like a million little insects crawling inside my bones every night. I cannot sleep. So sorry for you Leelee. I've also had TKR on my left knee and know what you mean about post op. Keep sharing how you feel with us

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Hi! You are new to RLS? I'm so sorry for you're recent diagnosis! I'm assuming by what you write that your GP isn't very sympthatetic. That's the worst and I'm so sorry!

How is the Ropinirole working for you? Do you find that the Magnesium helps?

There are different classes of drugs, and DA (Dopamine Agonists) are one of them. Someone with more knowledge of how DAs work will hopefully chime in here.

What is TKR?

(Sorry for stealing your post, Leelee).

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t

Total knee replacement, sorry...............

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I do feel for you can’t you have a rant to another woman, is your rls bad or bearable I feel no one understands,me but it’s nothing to what you have sending love xx

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My rls at the mo is bearable most of the time, I’ve started taking magnesium citrate powder, it does help, but side effects are diahorreah cos it’s a laxative, can’t bloody win can we 🙄. Why can’t there be 1 thing that doesn’t have any side effects? Thankyou for the love, sending you some right back xx

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Lee, my understanding of magnesium is if u are having diahrea body gets rid of it magnesium is the only way it works. You have my sympathy. Im throwing these you way bcuz they mad a difference, accupuncture for knee, rls. Kinesologist can tell u alot bout your body what meds will work and those that dont. RLS take any bar of soap rub on ypur legs/arms, minerals in bar of soap open blood vessels and let oxygen thru which in urn stops rls, apple cider vinegar, put some on a towel and rub it on your legs,.if u know somepne who makes essentials . They can take the massage oil and add circulation minerals, all these do the same thing as the bar of soap,, accupuncture does alot. Your body gets alot of painand your body has a cycle of energy well that gets interrupted by whats going on and accupuncture jump starts that cycle of energy again. It made a huge difference in my life. Vent anytime. Im here.

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Thankyou becca xx

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I read back over this magnesium expels when the body is getting too much... ive had rls for 20 yrs.

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Just to expand upon the bar of soap:

My husband sent me this from work the other day.

peoplespharmacy.com/2018/07...

I’ve have been trying this for the past two nights. I was so excited for the first 10 inutes of the first night since I could feel a caming sensation in my left leg especially! Unfortunately, it didn’t last. The second night went well, though! It’s interesting that they say this isn’t a placebo effect since the oils themselves are the ones that are supposedly giving the effect of calming!

(My method was to just have the bar lie at the foot of my bed. I’ll have to try rubbing it on my legs next time, so thank you for the tip)!

Leelee and Becca: speaking of oils, have you guys ever heard of Dr. Haushka’s Moor Lavender Calming Body Oil? This works wonders in calming my nerves!! It works so well for me that I describe «a drunken calm» come over me. I rub some behind my ears and on my neck. I was getting highly anxious on a public bus once, so I put some on and wow! There was lots of activity that I would normally have trouble tuning out, but not that time!

There is also a rollon «Aroma Ball» called «Head Ease» that works amazingly well at calming the nerves. You use it on your pulse points (temples and inner wrists)

dr.hauschka.com/en_GB/produ...

hollandandbarrett.com/shop/...

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LeeLee I know you can't take strong painkillers but would you be able take over the counter strength Co. Codamol which only contains a tiny bit of Codeine but might just take the urge to move sensations edge off? Is your ferritin iron level ok after surgery? X

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Hi pippins, co-codamol doesn’t help unfortunately, not strong enough ironically. I’ve not actually had surgery, just the injury, so as far as I’m aware my ferritin levels are still the same. X

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Have you ever tried Clonazepam as an add on? X

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I haven’t, no, is it a DA? X

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No its not a DA .x

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Can I take clonazapam alongside pregabalin? I’m wanting to stop the pregab as it’s not really helping me, plus it’s making me put too much weight on. Xx

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One of those clonazepam put me in A E never again

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How come?

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I don’t know I took it and a short while after I didn’t know was, but as we say we are all different x

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That’s not good 😞 that’s why I’m always hesitant to try new meds, but in our situations, we don’t really have much choice do we? That’s put me off trying that now though haha x

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Just want to say that I’m sorry things are tough at the moment and I hope they improve soon!❤️

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Thankyou Jess xx

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I'm sorry you're going through it. I think we have all been there at one point or another. Rant away my dear! We'll be here to listen. Take time to try to do something you enjoy, even if its Netflix. And remember to treat yourself as tenderly as you would anyone else you would come across in crisis. Self love is important. Peace and blessings! Feel better!

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Thankyou for that, very much appreciated. I think what is also getting me down is that I am stuck in the house more or less 24/7. My partner and daughter both work so am on my own until they get home. Plus my anxiety is sky high and I’m constantly having panic attacks, which in themselves are debilitating 😪. I try to do as much as I can around the house that doesn’t cause much back pain, which isn’t a lot to be honest. I’m usually such a strong person, but this has got me beat which is annoying. And my boss cane to visit me the other day to discuss a new contract and to see how they can help me back into work. Which, I really want, but am so frickin scared about because of the anxiety. My dr has referred me to an anxiety management course, but they take time. I’m just feeling like it’s all a lost course, I can’t see any way through it all, but maybe I’m wanting it all too quickly? Who knows. Anyway, thankyou all that take the time out to read my ramblings ❤️ xx

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If you are can't excersise and have weight problems, which won'nt be doing your knee any good, you need to drastically reduce your carb intake. Cut out sugar and any foods with high levels of sugar, like sweets, chocolate, cakes, soft drinks. Alcohol and deep fried chips are also high in carbs. Not only will that hellp with the weight problem, but you may find that it reduces and may even eliminate your rls.

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Hi, I’ve cut out biscuits, sweets, cake, I don’t drink and don’t fry any food. I have 1 sugar in my tea, but only have 1 cup a day. I have drastically cut out a lot of sugar from my diet, not all, but loads, but the weight still goes on, and I do think it is down to pregabalin.

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I would urge you to cut out the remaining sugar in your diet and cut out past, if you eat it, cut down on the size of portions of things like white rice and potatoes. I weigh my rice before I cook it, so that I'm not tempted to just have a bit more. I have been free of serious bouts of rls since I have been following the diet, until the other day, when I had a meeting at lunch time, so just had a bowl of soup and and a roll for lunch. I late had fish and chips and later a snack of deep fried Indian pakoras. late in the evening. I ended up with rls which kept me awake till 4 in the morning.

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Go full-on Keto, short for a ketogenic diet where you switch your fuel source from glucose-based to fat-based. It has been shown to help with sleep issues and RLS. It is also the most efficient way to lose weight. This is a fascinating and clever study on WHY this helps with seizures in epilepsy. They discovered that keto essentially enhances GABA (a neurotransmitter associated with sleep), and it accomplishes this by changing the gut microbiome. Curious that the same anti-seizure drugs (Gabapentin) also work to alleviate RLS symptoms. sciencedaily.com/releases/2...

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If you want to find out more about the microbiome and it's effect on the nervous system, read 'Gut' by Guilia Enders. It is an informative and at times very entertaining book.

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Lyrica absolutely causes weight gain.

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Hi i had a partial knee replacement i was in a similar position. I got anxiety i had CBT therapy which i was dubious of but it did help i was also put on sertraline which helped and i am now lowering my dose from 150mg gradually to 50 ad hopefully soon will be off c it and am not anxious even though i have alot of stress at mo. I also take clonozepan which do help u sleep even if u just try half of one it can help but we are all different but worth a try. I have been on ropinerole, gabapentin and pramiprexole for Rls over the years and have augmented on them all eventually. I am trying Cbd oil and Kratom. U will try anything to het rid of this horribe syndrome. It can literally drive u nuts at times. I hope u find something. Maybe change doctor as some are more understanding than others. Good luck xx

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You are not alone with the anxiety. I know this may sound silly but I found an app for podcasts and when I feel panic attacks coming I play a podcasts and it seems to reset my thoughts. I especially like anything about travel or Oprah's Super Soul Sunday series. Give it a try and let me know what you think! Good luck.

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Hi thankyou, I’ve no idea what podcasts are 😂 but I will look for the app for it 👍.

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Found them, thankyou, great idea 👍.

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I can empathize with you, not being able to walk and exercise as you would like do to physical injury and pain is a double struggle with RLS. It makes everything worse. I delt with sever Plantar fasciitis for several years. and aver exhausting every other non-surgical options I finally went under the knife. I was so worried about how I would deal with my RLS during recovery when I had to be off my foot. Luckily they gave me a prescription for Hydrocodone for the pain. It knocked me out so I could rest. I don’t think I could have done it without that.

But during that time where I could not be active my RLS got incredibly bad to the point I was exhausted and desperate so I reluctantly agreed to try ropinirole. At the time I had no idea about how bad it can be. And it was amazing for a few months. I slept peacefully through the night. But it did not last. And in my opinion, was not worth it. I wish I had known how hard it would be to get off the darn thing. Between my new inactive lifestyle and the drug, I put on 50 lbs in a year which only added to the cycle of misery!

I just finally got off the ropinirole and am trying to treat it naturally. I seem to have it at a manageable level right now. but just barely.

I feel for you, and hope things get a better. Are you going to have to have surgery on your knee?

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It’s not good is it 😪 I too have plantar fasciitis, but what with the rls and other things going off I’ve not noticed it as much. Well done you for braving surgery, I’ve been offered it for that, but I’m leaving it until it’s really bad. As for my knee, I don’t think I need surgery at the moment, fingers crossed anyway. I think all our stories on this forum and others should be printed off and placed in every gp surgery world wide so they can read the hell that we have to endure. All the best to you x

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Keep writing on here someone will answer you , I know it’s different but I lost my husband last year , I am a strong person and try to do things myself BUT it’s awful with the breathing I have to stop and breath properly, then I get dizzy and on my own you have to breath properly again it’s frightening , I just want to talk to someone but my friends think I am ok so I usually finish up in tears and that makes me feel worse good luck to you xx

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You can be the strongest person ever, but we all need someone to turn to occasionally, I feel you should maybe tell your friends how you feel at times, like scared. There is nothing worse than feeling scared when you’re on your own. If they are your friends, they will understand and be there for you. The breathing you talk about, is it panic attacks? If so, try the breathing slowly into a paper bag, it works for me. Take care and keep talking on here aswell, we all need each other at times. X

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Have you tried breathing from your stomach? Kind of like inflating and deflating a balloon, it's supposed to be a calmer way of breathing.

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Not tried, or heard that 1 before, no jess. X

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Breathing with your diahragm. An invaluable lesson learned from my therpist. Here is the first website I found on the subject.

my.clevelandclinic.org/heal...

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Is it a good morning or rubbish, I had a good night so that wonderful, have you tried kinesiology it’s brilliant it’s a mind and body thing look it up when I have that I always have a good night , sorry but you will have to pay but to me great x

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Not a bad morning thankyou, managed some sleep 😊 not tried kinesiology no, will have to look into it sometime., How are you today? X

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As I would tell everyone I am fine thanks , like us all you just have to get on with it take care and I mean that xx

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Just a couple of suggestions for your pain, it must be hell without painkillers. I have a TENS machine with which I've had varying degrees of success. I've just discovered it doesn't seem to be any good for nerve pain, but pain from damaged tissue might be amenable to it. The other things is progressive muscular relaxation, for which you can get CD's or probably download something that will guide you through it.

You can find written instructions here

anxietybc.com/sites/default...

or you can listen to an MP3 here

livingwell.org.au/relaxatio...

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Thankyou, much appreciated 😊.

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