RLS is ruining my life!

I have had RLS for as long as I can remember. I am 40 now and you would think I would have made some progress toward relief but honestly, I can say it seems to be getting worse if anything.

I've been on a dose of Mirapex AND the generic version since 2009 and it did work to manage the symptoms for a good bit and then I had to up the dosage gradually through time. Now I sit at a dose of .5mgs at 8:00 pm and then at 10:00 pm. and I am obviously going through augmentation. The medication is less effective. I have RLS during the day in legs and arms/hands. My concentration is poop during these times. I have a terrible time sleeping and then I am exhausted during the day. Falling asleep at my computer. Wanting to dose while driving. And then I can sit at night to either finish up work or just relax with my wife. As I type this, i am ready to crawl out of my skin from RLS.

Ive tried more exercise, less caffeine, less alcohol, Requip rather than Mirapex, Epsom Salt bath. and it is still there always.

I have things i want to accomplish in my life and at every point, I feel like RLS has a hand in keeping me from these things. I am not sure why I am writing this other than to just get it off my chest. On other people with RLS know just how horrible this is. Even when you try to explain it to anyone (even your significant other) or they see what the struggle is like, they just cant understand how obnoxious the feeling is.

The RLS struggle is real and I'm tired of it! AGGGGGGH!

39 Replies

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  • Definitely hear you. It's AWFUL, isn't it? Glad you were able to get this down. Did it help? If you want any suggestions on how else to help deal with RLS I'll be happy to share.

  • it is indeed terrible. I just cant see how I can continue to live this way for the rest of my lfe without figuring it out. Ive read it is the brain not emitting enough dopamine. It is inflammation of the nerves. any thoghts are welcome.

  • I have been where you are many times. I' say oh what is the us .If it doesn't get any better why do it. But I hung in and tried a dozen programs and never got any better, but I was able to meet my Great Grandchildren and see some of them as grown ups and what a joy they have been. Hang in there and keep trying every drug they offer you, none are perfect but some help.

  • All love ever tried is gabapentin so I can't address anything about the meds you've been taking. It worked for me is all I can tell you. If you haven't tried it, talk it over with your MD. I WISH YOU SUCCESS

  • Hi and welcome to the group. You are correct you have augmentation from the Mirapex your dose is way too high. The only way forward is to get off the Mirapex --easier said than done I know (I have been through augmentation and withdrawal ).

    The only humane way to do it is by decreasing the Mirapex very slowly (as you are on a very high dose this will take months ) and by taking a strong painkiller, some find Tramadol useful, some like myself need something even stronger.Reducing the Mirapex will result in very severe RLS so it is important to find yourself a good doctor who is prepared to work with you and prescribe the painkillers. Which country are you in?

    You asked about dopamine --people with RLS have enough dopamine but faulty dopamine receptors which transport it around the body

    The doctor who is prescribing and increasing your Mirapex doesn't understand augmentation so you definitely need to find a doctor

    Are you taking any medications for anything else as many can make RLS much worse? Have you had your Ferrartin iron levels tested?

    Avoid alcohol all together it will usually make RLS worse.

    There is a way forward --it will take time but it is possible. X

  • We were writing at the same time Pipps! Great minds think alike.... x

  • Welcome back Pippins!

    And - OP- Listen to her advice.

  • Well you have self diagnosed the problem. Yes you are obviously going through augmentation and the only thing to do now is get off the dopamine agonists.

    Read all the posts on here about it and get off slowly with your GPs help and a strong painkiller like tramadol/codeine/OxyContin.

    There are other meds you can take once off dopamine agonists like gabapentin/ gabapentin enacarbil/ pregabalin.

    You should also get your serum ferritin tested ( needs to be above 75).

  • Hopkins specialist says ferritin needs to be above 100.

  • Thanks Grammie. You are right & some people don't notice any improvement until closer to 200.

  • Nicely put Joolsg

  • I have tried all even those silly things like sopa in my bed, i have two bars top of bed and one at bottom, when RLS hits hard i take a prempexole, walk for a little, rub hard fro the top of my legs to my knees, then stretch out (really stretch, across the bed) and believe it or not it helps to take away the terrible sensations, and manage to have a peaceful nap, which somewhat invigorates me

  • So very very sorry for your pain. X

  • There is hope! After augmenting I used Tramadol to get off DA's and years later am still on it. Had some bad spells but by avoiding triggers (food, some drugs, lifestyle) am currently RLS free! Nearly 3 weeks now!

  • Hi, I have never ever before joined in 1 of these chats, but I too am pretty desperate .... and I am a retired Dr!

    I wouldn't dare to try the tabs which can cause augmentation and am very glad I never did.

    I have looked into food triggers before but it seems so unpredictable I've never been certain of any, except I think marmite/yeast extract.

    Any other triggers found by anyone I would be grateful to know.

    I used to find Pregabalin really good but the effect wears off and the dose i found needs to be increased. It seems to be the cause of my considerable weight gain too in that I weaned myself off it for a couple of years and the weight just dropped off but eventually wanted a little respite again and the weight immediately piled on. It has also stopped working again and i think is causing me to feel very anxious so I'm going to come off it again.

    But then what?

    I've looked at every research article I can find, tried Magnesium Vitamin D, Iron ( am tempted to request an infusion to get Ferritin up to 80 ), codeine, paracetamol.

    Some of the other suggestions I daren't try as I'm also scared of side effects. I once paid for a phone consultation at the London Sleep centre. The guy I'm afraid was arrogant and hopeless, wanted me to take Melatonin which is said to make RLS worse, also Clonazepam. I asked about side effects and he replied " you don't need to know that"! Thankfully I was aware of the addictive potential and other risks.

    I have some Tramadol but am worried about addiction as It's bad enough having severe RLS without adding to it!

    I find a wee sleep during the day makes a big difference as you can then sleep peacefully rather than being woken every hour or so so it makes the rest of the day easier.

    There's a research institute in Boston, US, I think at John Hopkins I am tempted to contact them. Has anyone tried them?

    I have both familial RLS but also have peripheral neuropathy so I think I may have a double whammy.

    the neuropathy relates to a blood paraprotein and I've been offered Plasmaphoresis to see fi removing the protein would help but again it's a big deal to be given so many other folk's blood plasma and potentially so often so so far haven't taken the plunge.

    Sorry this is so long. All ideas very welcome!

  • Hi Alison

    I noted that you have found some food triggers for your RLS. This might be an indication that you would benefit from following one of the diets that have been found to help.

    As a doctor you would appreciate the importance of a systematic approach to finding triggers. The two diets I have had experience with are the FODMAP diet developed by the Monash University for IBS and the Low Chemical diet developed by the Royal Alfred Hospital (RAHS) in Sydney for chemical related food intolerances.

    These are both elimination diets where you start with a very restricted diet that is almost certain to eliminate most triggers and then "challenge" your body by re-introducing foods one at the time in a logical order. The ultimate aim is to identify a diet that you can live on without exciting your intolerances.

    I suggest you start with the FODMAP diet because some people find immediate relief and don't need to go any further. I got some relief from going gluten free,. more by low FODMAP and really good result from adding some of the low chem diet. I was on the low FODMAP diet for about 12 weeks before I got the relief but some people have said they benefit on their first night. What I am doing at the moment is a bit of a mix which is one reason you should get a professional and experienced dietician to help. I still take a vitamin B12, and a folate tablet in the morning and an iron biglycinate at night - just in case they are doing something. I have gone from RLS 7 nights a week to RLS usually after I have eaten something not in my diet. Incidentally there is often 24 hours delay between eating a trigger and getting RLS and it might then affect you for two nights.

    There are quite a few web sites dealing with FODMAP food But I think RAHS is the best place for the low chem diet. Monash has an App for your phone that helps and I believe RAHS has a very good book but I think you can only buy it through a dietician.

    I would strongly recommend that you consult a dietician who has experience with these diets.

    I hope you are one of the lucky people who benefit from a diet, unfortunately not everyone does.

    Please feel free to contact me if you want any other information.

    Good Luck

    Graham

  • Thank you very much Graham. It's all worth a try.

    I have no real idea if I have food triggers or not as it's so unpredictable - have a particularly bad night then try to work out what have eaten & see if there's any consistency.

    What I have noted for sure is that if I eat late or my stomach is too full then it is particularity bad - I've heard others say that too.

    Thanks for your help and taking the time to reply. I'm going to first of all try this new iron preparation I've been alerted to I think.

  • Your iron (Ferritin) is low? It's a key ingredient in RLS for many suffers. Some of the newer iron supplements readily cross the Blood/Brain Barrier - specifically iron bis-glycinate chelate (Ferrochel). Still the leading authority on RLS is the Johns Hopkins University Neurology Dept. "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." hopkinsmedicine.org/neurolo...

  • Thanks for replying. No, my ferritin isn't at all low in normal terms, think was 50 or so, just have seen recommended to get up to 80 if I can and that the only way to do this is by infusion if several weeks of oral doesn't do it but then I have to get someone to agree to give me it ( and also take the slight risk )

    I live in the UK. Is that preparation you mentioned ( I presume is oral ) available in the U.K. do you know?

  • With Severe RLS (day and night) - Mine was 49 with a percent saturation of 25%. Supplementation with Ferrous bis glycinate chelate ended the RLS symptoms like lifting a veil - in less than a week! "Ferrochel® (ferrous bisglycinate) is a patented chelated form of non-haem iron that passes through the stomach and small intestine without breaking apart. It has been shown to be more effectively absorbed than other types of iron chelate in healthy people with different iron levels." Available as a tablet - search on Amazon and also as a patch patchmd.com/Iron-Plus-Topic...

  • Could you also let me know what dose you took please and in what form?

    Thanks

  • I took an 18mg Albion Ferrous Bisglycinate Chelate mid morning between meals.

  • Thank you very much

  • Your ferritin needs to be above 100.

    I actually see the specialist at John Hopkins. See Dic Carlson's post above this for the link to Hopkins information regarding iron/ferritin.

  • That would be absolutely wonderful if that happened to me as well.

    I had never heard of this preparation. Took Ferrous fumarate for many weeks.

    I'll order some straight away.

    It's such a bizzare condition isn't it, so distinctive and oddlt diurnal ( unless you're one of the poor souls who got augmentation from the dopamine drugs.

    Anything that helps even to a small degree would be really welcome. Your result would be beyond my wildest dreams.

    Thank you!

  • I too 100% understand where you are coming from.. When I was diagnosed with chronic RLS at the age of 48 (after suffering from it since childhood) the specialist who diagonised me (after reading my 'Quality of Life' statement), leaned back in his chair, put his arms around the back of his head (and didn't say the words 'is' or 'will'). His exact statement was, 'Good God woman ..this thing HAS totally ruined your life'.

    I must admit that his statement brought me to tears, as it was the first time in my entire life that somebody understood and showed compassion for the torment that I was going thru

    So i thoroughly understand what you are feeling right now.

    But you have made the correct decision in joining this group. The advice given is invaluable and is gained from wisdom thru personal experience and not from the reading of a book

  • Alison7 and RLS_ I am sorry that you have cause to be on this site but you will find it an amazing resource in combating this appalling affliction. I would reiterate what the others have said: raising serum ferritin levels is the single most important step you can take. 50 is far too low. They need to be over 100, sometimes nearer to 200. I found that taking iron every second day caused my levels to rise much more quickly than when I took it every day. I believe there are studies to confirm this. Iron bisglycinate can be purchased in Holland and Barret and it does not need to be taken with orange juice or other vitamin C.

    There is a tiny minority of sufferers who do not benefit from raising serum ferritin levels but the vast majority experience considerable improvement to total relief when their levels increase.

    Alison7, in your shoes I would not hesitate to consider opioids (but only after I got my serum ferritin levels to over 100 and found I was still suffering). There is a very low incidence of addiction associated with opioid use for alleviation of RLS. Many, many sufferers remain on the same dose for years and even decades without any desire to increase or abuse the drugs. What you are describing is a miserable life. You deserve better. You could also consider kratom which is less addictive than opioids and (I found) more effective against RLS but unfortunately is not legal as a substance to be ingested - although apparently is still lawful as a dye. If you are prepared to flout a law that sadly deprives us RLS sufferers of a very effective option, you can order this from Amsterdam based websites.

    Phogan, I almost wept when I read your consultant's reaction - if only there were more like him. Sadly the type that Alison encountered is far more normal.

  • Thank you so much all of you for taking the time to reply to me.

    The site certainly seems to be full of folk with wisdom, fellow feeling and happy to share any knowledge they have. It's feels great.

    I'll certainly now do my best to raise my Ferritin to 100 or even 200 if that's what the specialists are saying.

    So, I'll buy the type of Iron suggested. Could someone please let me know what dose is advised? I see the info about every 2nd day perhaps being best.

    Do the tablets or patches appear to work the best?

    Do John Hopkins resort to IV infusions ever or does that become unnecessary with these sort of tablets?

    My husband was a Haematologist and has told me that with the other types of Iron preparations once your body has decided you have enough Iron board it just doesn't absorb any more.

    But that may be why this preparation is better as somehow it manages to bypass this mechanism.

    Thank you all again.

    Hoping for a decent sleep one day for everyone.

    Alison

  • Alison, your husband is right, in so far that that inhibiting effect to iron uptake (by a substance called hepcidin) lasted up to 48hrs (in a study published in 2015). Hence the advise to revert to alternate day supplementation (of one dose of iron). Also helps with the constipation often caused by high iron intake :-)

    I haven't yet looked into whether these findings have been corroborated in later studies. But I took alternate day doses and increased my ferritin from below 50 to over 100 (but that is a study of n=1, not scientifically sound ;-( ). And I believe others have done the same. It took several months, though, but that is not different from 3-times-daily iron supplementation.

  • Thank you very much. This advice and information is so helpful

  • The other thing I would say if it helps anyone at all is that though eg Pramipexole seems to help some people at first It sounds as if the augmentation is absolutely horrific and i wouldn't touch it.

    As an ex GP in the UK I remember clearly many years ago that there was an awareness campaign for RLS. At that time I had it mildly.

    Then, some months later out came the drugs like Pramipexole, which were already being used for Parkinsons, and I realise now that the awareness campaign must have been pre marketing stuff from the drug companies.

    I realised that the drugs often had adverse effects on those with Parkinsons but it appears justified as they at least 'buy' them some more normal life.

    But i decided never to touch these tabs just in case.

    I imagine the trials hadn't yet shown the augmentation effect as it takes time to develop.

    By chance i discovered Pregabalin worked. i was prescribed it when my peripheral neuropathy started and discovered this miracle effect on RLS, at that time 50mg at night only. I actually phoned the drug company to ask if they were aware of this and was told yes and that trials were underway.

    Then I discovered the down side of the effect wearing off and needing to increase the dose. I got up to 150mg and then that effect wore off. I also considerably increased weight.

    I decided to try to come off them some time ago. I discovered that withdrawal effect can mimic rls so you have to come off very slowly. Eventually I managed and off came the weight as well with no effort.

    I have no idea if my RLS would have been as bad as it is now if I had never taken Pregabalin by I kind of suspect some sort of augmentation. Definitely it lasts often till say 7 or 8am now whereas before I'd know that once I'd seen around 3am I could expect some sleep.

    Eventually after 2 years off, trying Paracetamol and some Codeine, which does help a little, but often waking at least hourly, I restarted Pregabalin at 75mg. It definitely helps a bit but again the effect has started wearing off and I am at least 1 stone heavier, probably more ( I daren't look ).

    I also think, especially with the higher dose it makes my balance less good and makes my blood sugar suddenly drop.

    I also think it makes me over anxious.

    So I'm going to try to come off it again.

    That's just my tale in case it helps anyone.

    Am so hopeful that this new to me Iron preparation will solve the problem

  • Thank you for the replay and I will indeed try as you suggest to take iron and raise my ferritin level.

  • I just tried a product I got at Walgreens called Magnilife Relaxing leg cream. I messaged generous amounts into calves and thighs and it seems to be calming my legs. I used to get a nice heavy feeling in my legs at night from Nortriptyline and haven't had that since I've been off it, but now I'm getting the same feeling from this cream. I'm liking it so far. On Amazon the reviews are 4 out of 5 stars. Another thing that helps me is a using a massage device on legs. I also take 300 mg of magnesium Citrate at each meal. Hope this might help.

  • Hiya I feel exactly same as you grrr I've just been to docs and I asked do any of the doctors know wot rls is I think I embarrassed him a bit and I sed is it because of all the tablets I take since I had heartattack 6yrs ago he sed didn't think so thinks I shud see a neurologist and wen I see physio on 17 th Aug to ask her to sort out a MRI for me so he has upped my pregabalin to twice a day oh I feel as if I'm away with fairies on them and to stop ropinrole I don't think my family understand rls as much as I do ha so I just crack on as much as I can and I look after my dad who is a pain in ass and doesn't care atall about me or what I go thru as long as I do what he wants so so close to going on sick xxx

  • I have had RLS for many years and have recently found it is almost entirely related to my diet. If I have no processed carbs and, especially, sugar I will have NO restless legs at night. Even 1 plain biscuit, bread at night or the sugar in a flavoured yoghurt can set off my RLS. Sweet fruits are fine. I read online of someone who says potatoes set hers off. This works for me, not sure if it works for everyone. I hope you get relief.

  • Hi : just in case you want to read the following I just posted. Alia22

    I am going to send to many of you the following info for RLS sufferers.

    Like I posted few times, lately, I have been suffering most of the nights with severe RLS syndrome due to augmentation and not only I could not sleep but my body got so agitated and exhausted that I did not know what to do with myself. Many of you tried to help me with their experience and now I would like to share with you what happened since Friday night.I don't know how I said to myself, let me see if homeopathy has something for restless legs, not really believing that it can help such suffering. So I ordered from Amazon, Boiron (the leading name in homeopathy) Leg Pain Relief (for Restless Legs-Leg

    Cramps-Shooting Pain)for about $11.99 for prime members and one day later I received it and took it as they say in the directions and incredible but true, for the first time, in a long time I did not experience any uncomfortable feeling and I slept peacefully without any problem, taking also like usually my Lyrica plus Pramipexole that usually don't help but not this time, thanks to Boiron. So for 3 days now, thank God, I have only justified praise for this homeopathy medicine. Nothing to fear since it does not have any side effect, nothing to lose to try it and please note that I don't work for Boiron or any homeopathy website or anything like that. Before I forget it's called Zincum metallicum 6C and it comes with 2 other tubes (not for RLS) but use only the one for RLS (Zincum...) . On Amazon, type "Boiron for Restless Legs" and a box with Leg Pain Relief will appear and that's the one. Now it's has been only 3 days but I am so excited to feel "normal again" that I cannot wait to tell u about this. Now may be most of you know already about this in case I think I just discovered "America" and if you do already, no harm done, I am the one who spent time writing this and if it can help you, I will be as happy for you as I am for myself right now. Tomorrow will be another day and still hope that this wonderful result will last. write to me if you have any question I can answer about this. All the best to all. Alia22

  • I can relate to this exactly. As it is i’m Reading this in the middle of the night while everyone sleeps. I am exhausted and anxious and angry. I took Ropinerole for over a year and experienced augmentation fairly quickly though I had no idea that’s what was happening. My doctor kept increasing my dose and lecturing me. I’ve never felt more desperate and reluctantly sought a second opinion though my doctor had quite convinced me the problem was with me. I am doing better pain wise though i’m Still not sleeping and I have slowly sunk into a depression. I am almost 40 and have small children and I am beyond angry that I lost a year of my life to a stupid medication and that I still can’t seem to manage this condition and have it not be disruptive. I truly believe brighter days are ahead though it’s terribly hard to focus on that when it doesn’t feel true right now. If you hold on and fight I will too. My RLS is familial and I look at my sleeping children and think there has to be a better way to cope and we have to find it soon because there is a good chance my kids will deal with this too. I am encouraged by how many clever people there are on here!!!!

  • Don't despair Jvanw, you will find a way to manage your rls. There are many treatments and combinations of treatments and eventually one will work for you. You are very young and have many years left. You didn't lose the last year; I am sure you learnt all sorts of things about yourself that people who haven't been through this sort of suffering will never know. I view rls as akin to a disability. I have nothing but admiration for people who manage to carry on in the face of sometimes awful disabilities. We are in that category.

  • Thank you. I needed to hear that. xxx

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