Struggling

Hi,

I have been following the forum for a while now and have been struggling with RLS since I was a teenager, I am now 36 and this is the worst it's ever been.

I think my GP just thinks I over exaggerate never taking me seriously. He has started me on ropinerole and so far no side effects. My main concern is the pain and lack of sleep which is now showing in my work and ability to concentrate is zero. There must be something he can prescribe to help? I am going to go insane very quickly not sure how much more I can take πŸ˜”πŸ˜”

I have done everything suggested walk every day, take iron tablets, tried relaxation techniques (didn't work), don't drink caffeine, avoided alcohol, don't smoke, keep sleeping patterns the same every night, don't exercise close to bedtime etc you name it I have tried it.

I feel like I have hit a brick wall, I have done everything I can and I can't cope or carry on like this.

Help xx

17 Replies

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  • Mc9876 sorry you are having a bad time we all know what you are going through like you dis cribe I have done it all one time I had 3 hrs sleep in 2 days it was awful yes and the pain,well if your doc thinks you are making it up change docs a docs job is to help people ,all I can say is at the minute I am on Tramodol and it's going good next week might be. A different story ,don't put up with it go back good luck xx

  • Thank you beady3 it really is the most awful condition to have, having such a bad day very sleep deprived and emotional! The constant having to get up and pace around all night is certainly taking its toll as am sure you know only to well.

    I am going to print off some information about RLS and give it to my GP and say I want to try new medication to help with pain/sleep. I have seen Tramadol mentioned a few times on different posts, may see if this is an option.

    I hate being made to feel am just wasting GP time but it really can't go on like this for much longer. I don't know what to say to make him listen, other than begging at his knees to help me. Think I will have to switch GP like you say.

    Wishing you a peaceful nights sleep 😊

  • Hi so sorry you are having such a dteadful time,we can all appreciate just what you are going through.It would help us to help you if you could give us a bit more information.Do you have any family history of RLS? This helps us to know if yout RLS is Primary(genetic) or Secondary.Do you take any meds for other conditions? (You can send me a private message if you prefer) Have you had your ferratin iron checked? What is the dose of your Ropinerole and have you needed to kedp upping the dose?Do you take any over the counter meds? Which country do you live in? Dont give up there are lots of other meds you can try.We are here to support you,i was where you are now a few years ago and now i sleep well 95% of the time.You may need to be referred to a Neurologist but you will find something to help.Did the Ropinerole ever help at all? Keep talking to us we understand completly what you are goinh through.I am glad you have made yourself known to us as now we can try and help you.Sending you a hug you sound as though you need one....Pipps x

  • Hi Pipps,

    Thank you for your reply. I am so glad I posted now with all my lovely replies and advice it really means a lot 😊.

    There is a family history of RLS my mum, sister and great auntie all have it but not so bad it interferes with daily life and symptoms not always present either and they take no medication.

    I was put on iron tablets last year as ferratain levels very low but they were checked again at end of year and where it should be about 50, think that's normal.

    Unfortunately I do have other ailments, I was diagnosed with lupus two years ago and take predisnole and pregablin for this. I also had a DVT and am now on a drug named rivaroxaban for life.

    I am also on a drug named Venlafaxine which is an antidepressant and I know it can be the cause of RLS but I have taken it now for several years and my RLS hasn't always been present.

    I take 3mg of ropinerole each day and have for several weeks now as I asked to be put on it as pramipexarol just didn't help.

    I live on a remote island in Scotland and not really aware of any GP's specialising in RLS that I know of here.

    Thank you for taking the time to reply and for your hug 😊 X

  • Hi Mc9876, ,from what you have said I would say 99.9 %chance you have the Primary type of RLS,same as me.I am the worst in my family too and it sucks I know. You would not find a GP specialising in RLS although I do know of one that has a special interest but not in Scotland. You would have to be referred to a Neurologist preferably one who specialises in Movement Disorders or a Sleep Doctor. Not all Neurologists know much about RLS either so we have to be our own advocates.

    I would suggest you try Tramadol, as it is a synthetic opiate sometimes doctors are more willing to prescribe it over the stronger opiates The dose of Ropinerole that you are taking is higher than the new recommended daily dosage guidelines. It is now 1mg daily, 2mg absolute tops. Unfortunately most doctors are not aware of this yet.In any case it is not helping you and it could be causing augmentation. I would print off some information to take with you to the doctors appointment. Go to

    rls-uk.org Your GP can't argue with that site as it is the official UK site and reputable. There is even a section especially for health professionals. Don't be fobbed off! The antidepressant may be making matters worse, sometimes we can take a med and be ok RLS wise but as the condition progresses then we can't. However depression can be a serious condition so sometimes we have to work around the antidepressant meds.I can say that my legs improved when I changed antidepressants. Trazadone is considered safe, I take Mirtazapine now and although it can make legs worse it is less likely to than the tricyclics and SSRI. It will most likely be difficult to get off the Ropinerole and you will need the Tramadol to help you. I would wean down quite slowly. I am not telling you what to do with your meds simply what I would do lol.Let us know how your GP visit goes and remember we are all here to support you. ..Pipps x

  • Thank you Pipps you have been a great help, you are obviously an expert on the subject 😊 Lots of helpful information for me. I will print off info from that site you suggested and ask GP about Tramadol. I really hope my appointment goes well and he listens, going to go in armed and full of knowledge so thank you everybody for helping me out.

  • So sorry you have to go trough this. I had the same with my GP, he didn't take me serious and for over a year I was suffering really badly. To the point that I had enough and swapped GP surgery. From my first visit I noticed a big difference and the new GP showed understanding and support, that by itself was such a relief! Ropinerole made me feel sleepy and didn't do much for my legs. I am now on Pramipexole and Tramadol and omg I am sleeping like a baby :) So don't give up hope, just try to find a GP who understands you. Tessa.

  • Thank you Tessa, I am seriously thinking about changing surgery only problem is I live on an island so the only other one near by is miles away but might be worth it. I am so glad you found someone to take you seriously. Sleeping like a baby sounds like bliss 😊

  • Mc9876- there are so many people on this forum, there is a chance one of them lives near you that could recommend a doctor that will work with you and has experience treating RLS.

  • Thanks I will keep an eye going for people 😊

  • Don't give up. If your doctor isn't doing everything possible to help you, find another doctor. It took me quite a while to convince my doctor that RLS was a legitimate condition, but once I did she was very helpful. One thing I did was go on the internet and run off everything I could find about RLS - the different meds that were available, etc and gave them to the doctor. That will be the first step. I was the one that found Requip and Meripex and the doctor and I worked up a plan for strength, etc. It was trial and error for a while, but I finally found something that worked for me. The doctor now calls me her RLS expert and often refers to my file when she's treating other people. DON'T GIVE UP. You just need to find a doctor that has some experience with RLS. There are many more doctors now that will treat it - when I first started having symptoms, no one had heard of it - I took all kinds of home remedies (prescribed by the doctor), went to a sleep clinic, etc. It was very frustrating and took me a few years to get the help I needed, but I finally did. Hang in there.

  • I think printing things of the internet is a great idea as I am sure my GP thinks I make it up with the expressions on his face, he asked me to describe the feeling in my legs and when I told him it was like crawling insects in my veins he laughed! πŸ˜” Not very helpful!

    You are right it's so frustrating to keep having to go back and say the same thing over and over again and not be taken seriously.

    It sounds like you have found the help you needed though that's a positive thing πŸ‘πŸ»πŸ˜Š

    Thank you for your reply

  • Good morning, I get it, the worst in someone not believing in you, I mean what are you suppose to do in the doctors office act like an idiot screaming and crying in pain, then they think you have other issues, so what's a person to do if he just doesn't understand and you Can't handle this anymore ! I feel for you, your doing all the right things, I was in your situation I had to go on opioids to control the pain,

    Best of luck

    Hugs

    Carol :)

  • Hi Carol,

    That's exactly what I feel like I think I would need to go in there crying and hysterical for him to take me seriously. I don't want to come out and ask for opioids in case they think I am a drug seeking, I am just very paranoid as I have suffered with depression in the past and they are reluctant to put me on anything like that. It's just frustrating when that was all in the past they can't see this as a separate illness and it needs to be treated.

    Sorry I am just ranting on now.

    Thank you for taking the time to reply x

  • I know your struggle! I've been there too! I shared this post with someone else in hopes this helps someone:

    You sound like me, HMM-R! I've been searching 40 years for some answers, only to continue to grow worse and worse. I have tried everything you listed and experienced NO results, just like you! My doctor was killed in a freak accident and I had to get another one, and this one may have nailed the problem! He said that I needed to have my leg veins checked. I did. The Vein Clinic did an ultrasound of my legs and showed me veins where the blood was NOT recirculating sufficiently back to the heart CLEANED UP. The bottom line: my legs were retaining "dirty blood" which causes the leg tremors and jerking so typical of restless legs. I am in the process of getting approval from Medicare (they will pay for this treatment), and then I will start the process of the doctor closing off the stretched out veins that cannot sufficiently clean and return the cleaned blood to the heart. I'm no medical person, but I can understand this. The doctor in the Vein Clinic said that they cure "80 Percent" of patients with Restless Legs. At last there is hope on the horizon for me! I encourage you to look into this. It could be a permanent answer, which is what we all look for--not just continuing to "cover up the problem" with medicine that eventually does not work. God bless! Report back any progress you come across.

  • Thank you so much for your reply and certainly given me something to think about and investigate further, I have never heard of this before and given the damage I have to my veins in my leg due to the blood clot I had several years ago then this could be a contributing factor although I have had RLS since I was in my teens.

    I wish you all the best with your treatment and thank you again for the information very much appreciated.

    I have an appointment with GP tomorrow so wish me luck 😊

  • I'll pray for you. There may be several contributing factors to your RLS. There is to mine. I do know for a fact that food allergies play a big part in causing RLS. Also, bad veins contribute. So, it's a real puzzle to try to figure it all out. For me, I do not intend to take drugs the rest of my life just to have them quit working, be worse off than at the beginning, and hear my doctor say he can't help me further. I'm not going there.

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