RLS - FIBROMYALGIA - DIABETES

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I have had RLS now for 50 years it started by what the doctor called 'growing pains'  At the moment I am on Gabapentin  900mg three times a day,   Tramadol 200mg twice a day with paracetamol, and lately Lidocaine plasters.  I have taken Zopoclone tablets 7.5 mg by two a night. It is now 11 nights that I have had less than 2 hours sleep a night.  I feel like a Zombie,   nothing is worse than RLS even my Fibro which when it flares up is really bad.  RLS can take whatever tablet you throw at it and it does not have any effect it fights every tablet and wins.  I am so tired,   WHAT CAN I DO????

Jeannette   xxx

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  • Posted

    Dear Jeannette

    Sorry to hear you have such a problem.   I have also had RLS for about 50 years.  It became severe a few years ago and severely impacted my ability to earn or to enjoy life.

    A couple of years ago I suspected a connection between diet and the RLS.  I blamed Gluten so went on a gluten free diet.    This helped a lot but it failed quite frequently,  I read about a different diet intended for people with irritable bowel syndrome and I could see many similarities.   It hasn't cured the RLS but I usually get 4 to 6 hours sleep and quite often have no problem the whole night and I get 12 hours sleep.   Also the intensity of the pain is much reduced.     I used to have to keep walking up and down for hours but now I can sit and work at the computer.   So its more of a twitching than jumping.   Its still often bad enough to wake me but walking for a half hour usually calms it down and I get back to sleep.

    I have started a discussion in this forum on this diet under the heading Diet and RLS

    https://patient.info/forums/discuss/restless-legs-and-diet-372883

    Please read this and see if it sounds worth trying. Like I say  it hasn't cured me completely but life is a lot better.   It apparently works for ibs in something like 70% to 80% of IBS sufferers so perhaps it will be the same for RLS.   I hope so.

    I also take some supplementsincluding about 30mg of iron per day.  This helped for the first month but I think its benefit has reduced, hard to be sure.

    I hope to hear that you're feeling better soon

    Cheers

    Graham

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    • Posted

      Hi graham. I also use iron for RLS. The only kind that works for me is iron bis-glycinate. I have to take it on an empty stomach and at night before bed. It provides 100 percent relief for six to eight hours. Not a cure. Just works. My cure was stopping melatonin supplements. Also had to stop taking antacids and antihistamines. It seems that just about every drug you can think of can trigger or make Rls much worse. Everything from statins to anti nausea to metformin, atenolol, and of course anti- depressants. Tests on lab rats showed that consistently under eating increased the number and health of lab rats D2 receptors. We pretty much know that RLSers have shoddy D2 receptors. And the receptors are shoddy because our brains are anemic even when our iron stores are high. It seems once iron is stored our anemic brains can't get any. So I am literally sneaking my brain some iron at night by taking a bioavailable form on an empty stomach. But once that iron is stored it's all over. Sometimes I have to take an antihistamine or antacid and that's when I take the iron. HRT can also trigger RLS. Good luck.
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    • Posted

      I plan to study your Diet and RLS. But how coud this help with dopmine disruption? have experienced the flat-lining when the apparent improvement when using extra IRON.

      In my area there's a very long wait for a neuro appointments, so I live in fear of feeling suicidal before I can see somone who might help.

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  • Posted

    Hello Jeannie ... You are going thru exactly what I did several months ago before I started on Ropinerol, (Requip).  It's the only drug, (besides Methadone), that put a stop to my leg quakes.  It comes in two varieties, regular and Extended Release.  I take a 3mg regular plus a 2mg ER an hour before bed.  The 3mg shuts them down and the 2mg ER keeps them shut down the remainder of the night.  I have to agree with you that RLS is horrible.  I've often said that I wouldn't wish this malady on my worse enemy.  Ask your doctor about Ropinerol, give it a try and see if it works for you.  I pray that it will.  Good luck Darlin'.
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    • Posted

      Only people who suffer RLS will ever understand how debilitating this awful affliction is. not just sleepless nights but find i cannot even sit at night and read , watch telly or anything that involves keeping still . i cannot relax at all walking round all night legs jumping, twitching and painfull calfs ,i dread nightime as know problems will soon start . i haven,t found anything that helps . 
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    • Posted

      You are absolutely right Marilyn ... 'tis the bane of my existance ... and nobody in my bubble understands the impact it has on my life ... not even m Doctors.  They can know all about the symptoms, but they can never truly KNOW, unless they have it themselves.  That's why I come here from time to time ... for some obsure reason, it gives me a bit of comfort to know I'm not the only one who has to deal with this curse, and to chat with someone who truly understands.
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  • Posted

    p,s,  I forgot to mention that I also take 900mg Gabapentin with the Ropinerol.  It doesn't do anything for the legs but it sure helps with my lower back pain.
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    • Posted

      Hi Martin

      Went to see my darling doctor 2 days ago as I was so tired through lack of sleep and asked him about Ropinirol.  He has put me on Nortryptyline with my 900mg of Gabapentine at night,   I slept last night for 8 hours, this is the first nights sleep that I have had in years. Even my blood glucose levels where low 6.3 unbelievable in the morning.  My only problem this morning is my fibromyalgia my body is stiff and aching really bad but because I have had lots of sleep I feel that I cancope with most of the pain.  I'll let everyone know if this continues.

      Hugs to all

      Jeannette xxx

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  • Posted

    Dear Jeannie

    I don't understand much about RLS and it's causes and I haven't heard of anyone who does.  The number of drugs on the market and their varying effectiveness show its a very confused business.  

    There seem to be a lot of people who find that there is some connection between their diet and their RLS.    Comments about eating before bed and giving up sugar, caffiene, alcohol all hint that what we eat might be a cause or at least a contributor.   In my case I am fairly sure that one food that affected me was lactose.

    The Monash University FODMAP diet has been very effective for me but it needs testing on a large number of people before its results can be relied on.    I am hoping Monash will see this as a worthwhile project but that will take a couple of years.   In the meantime I am hoping some more people will try it out.  At the moment I know of one other person who has tried it and she said it worked from the first day.   She still takes some medicine but the last thing I heard was that she had week with zero RLS.

      I see it a s a safe and easy thing to do provided that your GP agrees that its safe in your case.  If he's a normal GP then he will probably tell you that he can't see why it would work but just ask if its safe in case you have other problems.  

    There are many people with ibs on this diet around the world so it should be very safe.

    I bought the Monash book but you might be able to download enough from their web site.  Search for    FODMAP Monash Melbourne      They also have a phone app.  

    I still take iron supplement every day but I have had adverse reactions to the drugs I have tried so I'm not on any drugs.   I have been advised not to eat too much of any one food.   For example bananas are allowed but I had about 4 per day initially (because they are easy)  and found that upset my RLS.   Now I limit myself to 2 per day and eat more Kiwi fruit and an orange.

    I am now getting enough sleep but my hours are bad  3am to 9am but I suspect this is because my sleep has had no pattern for many years and I am tryingt to retrain myself.   This would be a problem if I was trying to hold down a regular job.

    Please let us know how the diet works.    Incidently I have found that I have to be absolutely strict with the diet or I get the RLS back and lose one or two nights sleep.

    Good Luck

    Graham

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