I've been up for the past 2 nights,Help!!!!!

Posted , 16 users are following.

I have had RLS for yrs.

It seems to be getting worse

Meds are not helping anymore

I am so over this!

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  • Posted

    hi doris, just wondering , what is your sugar in take like? I FOUND when have a glass of  coke or something like that i get the reslessness really bad at night, I have been good and then bang, i had a coke later than i usually would  like 7pm ish and i was semi thinking i might get something goingon with the fidgety legs, and yes i did, it was bad. I am sure mine is sugar related
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    • Posted

      yes you would  think so, or the sugar. I also have had the restlessness in my arms. its either legs or arms. It is strange though as at one point i thought it was hormonal as when i was pregnant 22 yrs ago with our second child for the last three months i had the fidget and restlessness wildly for the last three months of my pregnancy, then it stopped immediately after the birth. SO i thought it was hormonal, now coming b ack during pre menopause, i  had thoughts again maybe hormonal.

       

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  • Posted

    You so have my sympathy Doris. I've tried over the years to make sense of when I'm up all night and just when I think I've sussed it then I'm proved wrong again! Absolutely no one seems to be able to help us. Now a funny thing happened earlier in the year. We went to Aus, NZ and Dubai - yes a lot of flying which is where my RLS started nearly 20 years ago. On some flight I was going mental with my other half rubbing one leg for 4 hours!! However when I got home I didn't have any problems for 2 months😀😀 Then it started again so l don't know. On decaf everything, keeping wine to a minimum but some nights I resort to whisky trying to knock myself out!!!

    So no, we're on our own with this nightmare until science comes up with a miracle. Sorry 😡😡😡😡

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  • Posted

    Me too Doris and there's nothing we can do. I'm grateful I only get it in one leg every week or two and when I do its awful so having it all night every night would b e a living hell. I take magmedium- may help. Don't know. I go to bed when I get it and it's gone a couple of hours after I go to sleep. Lucky me

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    • Posted

      You are lucky Kate if you can go to bed and stay in bed.  That is my problem.  I cannot lie there without going nuts feeling like I have to get up and move.  Six years ago I started with a terrible arthritis and had a hip replacement and a back operation that ruined my back so if that wasn't bad enough a year later I started the restless leg and went on gabapentin.  It is good that we can vent and let it out on this great web site.  good luck to you.

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  • Posted

    I feel your pain, its horrendous. I suffer with both legs but also my right arm. The heat makes mine worse so I try to keep cool and also use a lot of moisturiser as dry skin dont help. I only have it mildly now and some nights not at all. Might be worth having your iron ferritin levels checked. Mine were onky slightly low but a course of iron tablets has greatly improved things. Good luck 😊

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  • Posted

    Hello Doris, I have suffered quite a few years and found various info which may help you. If you are on Ropinirole you will get augmentation, that is ,you need more of it over time to keep things under control. See your doctor and try an alternative like Pramipexol or Rotigotin patches, these are the same family of drugs but seem to work differently on different people. Also something that shows up in my research is that you may have a low ferritin level in your blood even though the iron level is normal. Ferritin is used in the brain help with dopamine. I am trying an iron supplement at the moment as my ferritin level was very low and after 2months the symptoms seem to be less severe and occour later in the evening. Get the doctor to check your ferritin levels. Hope these ideas help, don't dispair keep researching.

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  • Posted

    Hi Doris get your iron levels checked or just but yourself some ferrous sulphate tablets from the chemist . One tablet a day and keep it up . Takes a while to start feeling the benefit but for me it cured it. Sometimes it returns and it's always when I've forgotten to take my iron.

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  • Posted

    A medicine called Ropinirole has helped me.  Whatever you do, I would advise never go on gabapentin.  I feel for you because I have spent many nights walking the floor, taking a hot bath, etc.  A hot bath does help.  .

     

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    • Posted

      I am currently on Gabapentin and have previously withdrawn from it without problem. I have few side effects and along with a low dose of Tramadol find it very successful. It is, along with Pregablin, becoming a drug of choice for those who understand RLS as Dopamine Agonists are to be avoided.
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    • Posted

      Dr.s seem think gabapentin will help.  Be VERY careful.  Luckily a friend related her and her brother's side affects from gabapentin.  On very low dose 100-200 mg I was ok but had to keep increasing.  At 700 I had awful psychiatric problems.  Couldn't carry on a conversation, became paranoid, tried to talk and was slurring my words, memory was awful, fearful.  My friend's husband found her hiding in the bathroom behind the toilet in a paranoid state.  I went to the doctor and she looked at me like I was crazy.  I was literally blithering and couldn't hold a conversation.  I went off immediately.  Neupro patch caused such a severe headache I was sure I was having a stroke.  Went off that at once.  Longer term gabapentin has bad side affects to come off.  Unfortunately, there isn't much that seems to work without some kind of side affect.  I take Robaxin (muscle relaxant) and Norco (pain med) and a low dose of requip if needed.  I also use 5% lidocaine patches for the pain that I experience almost nightly.  I am going to try the iron.  My count was just done and it is OK but on the lower side.  I'll give it a try.  Good lucky, experiment on what works for you.  H O T showers directed to my legs also seem to help.  Others - cold helps.  It's a miserable condition.

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    • Posted

      I went off of gabapentin because it did not do any good for my restless leg and I gained 25 pounds during the three years I was on it.  Now the withdrawal is making me feel terrible such as having bloating, stomach pain, fatigue, depression.  I have said this before but I would NEVER again allow a doctor to put me on this drug.  good luck to you.
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    • Posted

      yes garnella, i have heard bad things on the withdrawl side of it also. Hubby is on pregabalin for a back injury funnily enough but tried gabapentin for pain prior so this is why i also know a little about the tablets  you are all mentioning. But know more from reading bits on here over time. Typical though, one tablet fixes one issue, but causes another, sad but true
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