Why. Why.why.why i think im going mad!!!!

Arrrggghhh i cant take much more of this month. My rls has kicked off reakly bad the feeling is incredibly intense but only at the moment i try to go sleep i can feel it threw the day bit its alot quieter night comes i go to bed and it starts every night this monrh i have been up all night i try several times to go to sleep but nothing.its always there i know why its cause i went on fluoxtine for 3 wks after stopping clomiparmine the prozax hss drivin it crazy i havnt taken it for a week now but the restless legs arms and back are stoll as bad as it was. Im so fed up i just want to go back to normal reality... Ive had so little,sleep this month im really stuggeling with it........

21 Replies

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  • Magnesium Suppliments as soon symptoms or an hour before you think they'll start, works great for me.

  • Hello and sorry you are having such problems with your rls.

    My GP recently prescribed liquid Oromorph for me - I take a dose early evening and another just before bed and it works brilliantly for me! Only been taking it for a few weeks and I don't know if I will eventually get used to it and it will stop working, but for now it is giving me wonderful relief from the rls in my legs and arms. Like you, I was finding I was up all night so the almost instant relief has been most welcome. Obviously Oromorph does not control the symptoms, just masks them so sleep in possible but hey, if it works.....

    I know this may not be an option for everyone and some GPs may not be happy to prescribe it but thought I would share my experience in case it might help you.

    I really do help you find some relief soon.

    Tillyx

  • Works for me

    Bob M

  • I know exactly how u feel. I try and cramp my legs deliberately and sometimes after I have done it enough they hurt which is better than the rls. In the end the other night after laying there moving and twitching for ages I took 40mg of propranolol which are beta blockers which I have for occasional anxiety symptoms. I read a book and dropped off. Also iron tablets can help sometimes - good ones from health shop. Good luck!

  • Thanku for the comments guys. Still didnt get any sleep at all last not even a little bit. I cant belive how much this is effecting my life at the moment.since i wad 15 i always dreaded it coming on but it used to be ,1 or 2 a month and i could just about deal wirh that but this is just relentless. I am going to start taking vitiams espically iron sorting that today. I will have a chat with my doc about that medication u mentioned. Thanku again guys so good to be able to chat with people u understand how i feel :)

  • You should really talk to your doctor even about the iron. If you don't need the iron, to much can cause iron overload which can be worse than not enough iron, generally speaking. So, while you are talking to him about that, ask for a Ferritin level test. This shows how your body stores the iron, and is very much different than an iron serum test. If your Ferritin is low, it could be the cause of your RLS, or making it worse. Again, that is not what happens with everyone. I had very low Ferritin-12- (RLSer's should have at least a 50 score)

    and my doctor ordered iron infusions. I had 3 at 1 x a wk, and it brought my Ferriti level up to 153! That was good, but for me, it did not affect my RLS a bit. Some people get their levels up and their rLS dissipates, so you never know. rlshelp.org is a great web site maintained by a specialist. The treatment page lists all meds and is very updated, plus "Drugs and Foods to Avoid" which is REALLY important. Lots of prescription drugs and over the counter drugs can set off your RLS. Just throwing some stuff out there for you to do, and maybe you will feel like you have a little more power over the RLS. We all have those bad nights, no matter what we do, unfortunately, but they can become less with the right doctor and treatments. It is all trial and error, and lots of us have been thru it, so have a lot of personal experience.

  • Hot Baths work sometimes as a relaxant, but otherwise, speak to your doc and see what meds are suggested. Hope you find something soon to help .

  • I know exactly how you feel. I've always had RLS and it was kept well under control with just one clonazepam a night. Then I went through a really tough time. My manager at work was always a real bitch but my good friend there left and I was left on my own with the bitch. Then my husband became seriously ill with a back problem which although is not terminal is going to affect us for the rest of his life. On top of that my periods got out of hand causing me to need a hysterectomy. I went to the doctors and they gave me Prozac which combined with me having become very anaemic was enough to send the RLS into overdrive. I stopped taking the Prozac after a few months and I got the anaemia sorted out but the RLS has never gone back to the way it was before. If I'd only known that Prozac had that effect I'd never have taken it but if you say this to a doctor they totally deny that it's possible. Now I'm having to take more and more clonazepam to calm my legs down at night. So much so that it just knocks me out and I don't have much of an evening. Just a long time asleep on the sofa till I wake up and drag myself to bed in a daze. Unlike most of you I'm not suffering from not enough sleep. I'm suffering from too much sleep and it's leaving me without much of a life. I get home from work and by the time I've done all my bits and pieces I need to do and sat down my legs have started up and so I take tablet after tablet until it finally stops but by that time I've knocked myself out. I'm not asking for much more than a few hours more of an evening watching TV with my husband but it seems like the Prozac started something off that I'm going to have to live with forever.

  • Have you tried any other medication other than clonazepam...I know that med can make you very sleepy (not one for me) Some take a RLS med. + clonazepam, that way you could probably reduce the dose of that med.

  • I take gabapapentin 900mg a day as well as the Clonazepam. It does help but it won't do the job on it's own. I came off the Clonazepam several years ago when I became concerned that I was taking too many and I tried several other types of medication including Requip which I had very high hopes for but sadly, nothing. The only thing I haven't tried that a lot of people mention is the Oromorph but I think I would have to be really desperate to try that one. I think I read somewhere that your body develops metabolites for clonazepam and that's why you have to keep upping the dose.

  • Unfortunately, that is a really common story, as far as the Prozac. I wish I could say I had not heard of this hundreds of ties, but I have. That is why it peeves me so when doctors deny information that is right in front of them. I have an angel for a doctor, and we have had several sessions where she asked me about RLS. She brings in her laptop and googles things like meds, when I told her Horizant was coming out last July. But, it is really hard to find a doctor that, as busy as she is, will schedule longer appointments for me because we always run over. :o)

    have you had a sleep study done? You are right. something has to change, so that should probably mean seeing a neurologist or sleep doctor. I always vote for sleep doctor, because then you are right there already, and they know more about RLS than most doctors, because it is tied in with other sleep disorders. I hope you get some help, and looks like you will have to get "tough" and fight. We RLSer's are fighters, that is for sure.

  • I know I'm probably unusual in this but there's no way I can ever get to sleep in a strange bed. If we go away I have to function on almost no sleep for the first few days until I get used to a strange bed so the thought of a sleep study does unnerve me a bit. Also I live in the backwards old UK and I'm really not sure how easy it would be to get something like this done. Thanks for the advice though and if I get really desperate I'll have to really push for it. I must admit that the meds sending me a bit woozy and off to sleep at night can be quite pleasant. I mentioned before that my husband is very ill with a serious back problem and he also has MS so I sometimes think that the side effects of the light tranquilising effect of the clonazepam and the mood stabilisation that comes with the gabapentin may be something that I need..

  • I have heard before where prozac started off RLS. If a doctor suggests taking any anti-depressant for RLS, be very aware they can for most of us, send the RLS nuts. I am so sorry to hear of you having such a bad time....Before you start taking iron pills, see your doctor first and ask to have your ferritin level checked its a different test from just a iron test, low ferritin can cause the RLS to be worse for some. You should not take iron without your doctors say because too much iron if you dont need it can cause further problems. For people with RLS your ferritin level should read at least 50 or above....less than that and you MIGHT benefit from taking iron...

    Good luck perplexed, i hope you sort it all out soon and then sleep better.

  • I would go with the magnesium - I noticed an improvement in my RLS with those, went off them and on to requip. Four years later RLS is back with a vengeance, can't even go out after 7.30 without hopping around like a mad thing. I will go back to the magnesium as a supplement and give it a go again. I am a blood donor so they check my levels regularly quite often it is just under their iron threshold and I can't donate. I think we do have an iron problem too.

  • Roll on monday. I'll get myslef down the,docs its,been bad all day today aswel feels like its getting worse!!!! Thanku for ur advice guys. Right now im just dreading another bad night but i know worrying about it dosnt help but its really hard not to when im so tired. My doctor gave me zopiclone sleeping tablets does anyone know if they might b making it worse ?

  • I do take Zopliclone but I take it along with my requip as the Requip sometimes causes insomnia. ( Can't win!) It does help to keep my dose of Requip low. but I don't take the sleepers every night. Maybe once a week when I really need my sleep and the Requip is not working as well.

  • From my personnel experience sleepers can make my RLS worse taken on their own. Especially in the morning as the medication is wearing off. I only take them along with my Requip.

  • Cool i beem taking them for 3 days now and they havnt got me to sleep yet.but i will c how it goes tonight. Im so tired and fed up. Crossing my fingers for a better night :( deffo going bk to docs on monday.c about some of these meds everyones been talking about......

  • I was referred to a Movement Disorder Clinic after seeing Prof Choudrey ( spelling ?) in London. My consultant now switches my meds every 6 months. That way I can keep a low dose of the Dopamine meds and it works OK for me.

  • Hiya fellow rlsers well for satarday and sunday night my rls actually let me get some sleep well was proberly more the sleepingtablet amitroptaline and ibuprofen. I got that fed up i justknocked myslef out i know i shouldnt really have such a cocktail bit friday and saturday i was desperate not to have another bad night. Am seeing dctor again try and sort out a more sensable option other than plying myslef with different drugs. Last night was really weird felt ok all day took 1sleeping tablet instead of 2 as soon as i started to relax in bed it was there it was really full on for abput 40mins so got out had another tablet waited 30 mins and it was gone went bed fell asleep fine. Im due to run out of these zopiclone soon and not sure if she will give me more because apparantly there addictive.but am worried if i stop taking them it will be bk bad again. So next step......doctors!!!!! Got to sort something out and disciss vitimins with her........

  • I had tried most things until eventually my GP prescribed Neorpro patches. I've been on the 1mg dosage for about 5 weeks now and they are terrific and no noticeable side affects. They appear to be relatively expensive so some GPs might be reluctant to prescribe them. Good luck.

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