How do you all cope and what help do you get?

I have recently been diagnosed with RLS, my Dr won't give me any medication at the moment as I am on Venlafaxine and I also take Nortripilyn (sp). At the moment he has told me to stop taking the Nortripilyn as he thinks that may be causing it though I have been on both med for several years. He also said that they could reduce the effectiveness of any medication for Rls.

I have had jerking movements in my legs every now and again for years but I put it down to being over tired. Since September I have been having it more frequently and am now up every night. I really suffer during the day due to lack of sleep. Although I am married my hubby works away and is only home at weekends and he is a light sleeper so I come downstairs. Today was my 29th wedding anniversary, I got up at Lunch time and was so tired for the rest of the day so we never celebrated it. I feel bad that when he is home I tend to sleep lots or am over tired when I should be spending time with him. I have to force myself up in the mornings as I have 6 dogs so I need to get up to feed them and let them out and to let the dog walker in. I then spend the day being over tired and clumsy. I suffer with depression and Anxiety and have done for the last 7 years, rls is making my depression worse

Are any of you taking similar drugs to me and are taking a med successfully for your Rls or do you do something else to cope. Any help or advice on how to cope would be fabulous. Thank you.

19 Replies

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  • have a read on here see what it says about meds and RLS rlshelp.org/ might help , good luck

  • Hi Ruee

    Unfortunately, venlafaxine and nortriptyline can make RLS worse. Both these medications are listed on the RLS-UK website under the heading Medications to Avoid:

    rls-uk.org/#!treating-rls/czj2

    I am sorry that you were not up to celebrating your 29th wedding anniversary. Hopefully you can celebrate your 30th next y ear. :) It is our 40th wedding anniversary next year and we hope to celebrate this landmark in some small way.

    I am sure others will soon reply to your message.

    Kaarina

  • Ropinirole is my life saver.

  • Thanks for all your replies. I am really confused with the whole thing to be honest. I have been on the meds for years to treat different ailments. I have read the information on the link and it really refers to having the RLS first and then being out on the meds and you are advised to see if it worsens as sometimes they can but I'm already on them and have been for sometime.

    I have managed to get a hour and halfs sleep going back to bed at 6.00am. I tried to go back to bed several times but with in minutes of laying down my legs and arms would start and the only way I got relief was to get up.

    On the self help it says to have regular bedtimes routines which I do and to avoid taking a nap during the day so I am I going to get enough sleep.

    My Dr wants me to stay off the Nortripilyn a bit longer but I think it has got worse since I have been off them, is that possible?

    I am up every night at least for a few hours. Luckily I don't work but how do you that work manage? May be you could give me some tips of how you all cope during the day.

  • Daytime naps are good for RLS sufferees! Different rules to normal insomnia , you are not getting enough sleep at night, then up early with the dogs so you NEED those daytime naps as being overtired unfortunately makes RLS much worse .

  • I've been avoiding the naps in the day as the self help section on the website says to have a bedtime routine and avoid naps in the day. There is so much to take in. I even though about putting myself in the spare room on Sunday nights as Paul has to get up at silly o'clock on a Monday morning to go to work. He is a long distance lorry driver who gets up early every morning and sometimes has late finishes, he is also a light sleeper. He knew everytime I got up and came downsairs last night. I didn't realise that it could make it worse. Thanks.

  • Yes Dr.Buchfuhrer one of the worlds top RLS experts says naps are good! I sometimes go into the spare room so my hubby gets a good sleep , nothing wrong with that.Where in the world do you live?

  • I may suggest that to him next weekend. I hate to think I am disturbing him.

    I live in the wet and windy UK.

  • Me too.I was only asking as the Relaxis pad mentioned is not yer available in the UK.Hopefully some time next year but will not be available on prescription and its around £800 ! By the way the iron test you need is the ferratin iron test, it needs to be around 70 for a RLS sufferer much higher than what is considered normal for a non sufferer.Just so you know Trazadone is an antidepressant that does not worsen RLS.

  • My consultant had put on my blood test for to check iron for restless leg syndrome so hopefully it will be the right one. Not sure how long I need to wait for the result.

    Wow £800, not sure I would be able to afford that when it comes out as I don't work. I ended up having g more time off work for depression and Anxiety than I was in work.

    I will check on that antidepressant tomorrow as I know I wouldn't be able to cope without any. Thank you so much for your help and advice.

  • We all know how difficult it can be. You don't mention any pain associated with your RLS- I am assuming it's the kicking and jerking that is keeping you awake? Meds are definitely at the top of the list as possible causes, but there are several others. Lots has been posted here about using liquid magnesium rubbed into legs to calm them down; it helps some people. Iron is a problem too, but I don't know much about that. Try a search here, or maybe someone can post a link to get you information about iron. Stimulants make it worse in most people- sugar, caffeine, cold meds, etc. I think I am in a small minority, but my RLS is most definitely triggered by lower back issues, so lower back exercises work wonders for me, though it's a pain to haul myself out of bed at 2 in the morning to do them. But it nearly always works. And I use an inversion table. I hope you can find relief!

  • Yes, it is the kicking and jerking and a weird sensation in my legs and arms. My hospital consultant organised a blood test for me to check my iron levels as he mentioned that too. I drink decaff drinks due to my depression. I have read all the information on here and it has helped me a lot and has stopped me going g mad. All being well my Dr will phone me tomorrow morning so I am hoping he will be able to help me a bit more. As much as I wouldn't wish this on anyone, it is lovely to see that I am not going mad and that there are others going through it too, so I'm not alone. Thank you all for your replies, I have really appreciated them.

  • there is a medical device called the Relaxixs pad for rls. I have spent 10 yrs. searching and trying everything that is out there. The pad is helping me a lot. It is a pad that one lays legs on that has specialized vibrations that over ride the feelings. It is on the cumputer with information, it does require a rx. It is expensive but they offer a free trial & sometimes a rebate if you buy it. I am now asleep within 30 minutes and cannot tell you how much better my life is! There is talk that ins. will help with the cost in 2016 as soon as Medicare codes it.

  • Ooh, thank you, I will look into it. Before I had RLS I would go to sleep straight away. I will try anything to get some sleep.

  • I feel for you so much as I have been there with the rls no sleep lots of pain and not going to functions with the family,lots of trips all spoilt by rls. I have tryed so many meds but at the minute am on Tramodol it works great for me try those I wish you all the very best x

  • Thank you, I think I will mention it to my Dr tomorrow when he calls.

  • Please give them a go ,I have been on them for 15 months now they are the slow release ones much better than ordinary ,when doc rings you be prepaired with questions as it will be you that is left suffering. Will you let us know how you get on x

  • Yes of course. I really hope he gives me something. I don't function well with out sleep. Last night was my worst night so far. Thank you.

  • So I broke down on the phone to the Dr Yesterday so he has now prescribed me Ropinirole starting on a low dose. I have to phone him in a week to let him know how I am getting on. They didn't have them at the pharmacy yesterday so had to wait until today to pick them up. Managed to get to sleep about 4.30am this morning so I am hoping these will work. Not sure how long it will take to be effective and we have to get the dosage right. Could there be light at the end of the tunnel. I hope so.

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