Coping with RLS

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I've suffered RLS for 30 years and it appears to be deteriorating. I'm 66. I've been assessed by a Consultant Neurologist who has confirmed RLS and nothing more sinister. I take pramapexole x4 each day. Nothing else seems to help. I'm now suffering quite severe sleep deprivation. I've had to alter my life style and mental attitude to cope. Driving is impossible. In fact really quite dangerous. Unable to control the car with my legs shaking and sleep deprivation causing me to fall asleep at the wheel. I might be able to drive in the morning but not afternoon. No point trying to sleep much before 2am. If I manage 3-4 hours sleep, I'm lucky. RLS apparently has a cyclical component. It's worse between late afternoon and the early hours. I guess that's why I feel relief after 2 or 3 in the morning. So. I've had to adopt a coping stratagem. Curtail my driving and use public transport. Keep myself occupied till around 2am. Watch the TV standing up. Using my computer standing up. Pushing myself when tired. Sometimes a power nap, if my RLS allows, during the day helps. If only 5mins. Altering my medication regime to find which is best ie 2 at 4pm and 2 at 9pm and variations. I'm going to have to learn to live like this. There's no cure. Adopting a positive attitude and learning to accept my plight is also helping. Frustration and anger just worsens the situation. So this is my lot till the day I die. I've written this in the hope that I manage to help others. Tom.

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  • Posted

    I have RLS as well, however I am on Ropinerole 0.25 mg before bed, this was the starting level suggested by the consultant, increasing to 1mg over the period of about 10 days. However I stayed with 0.25mg as it seemed to be doing the job for me. My doctor and consultant agreed I could do this but change to a higher dose if necessary.  I know how you feel, I would often walk about the house 3 or 4 times a night for relief, it is very distructive of any sleep pattern. It may be worth asking to try Ropinerole, nothing to loose anyway.
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  • Posted

    Hi Thomas

    I have to offer a suggestion because I was much like you when I was a few years younger and the following worked for me with 80% effectiveness and some other people 100%.    It porobably wont work for everyone but it has to be worth a try.   I have written quite a few posts about a diet called the FODMAP diet and you must search this forum for details and to also see a few posts from others who have found relief by eating according to this diet.   There are also a few who found it did nothing for them.    I dont know how we tell then difference up front but going on the diet is a trivial excercise compared to your current problems.   The diet was developed by Monash University in Australia and their site provides some information.   You can buy an App for your smart phone there which I haven't used but I have been told its excellant.  The good thing about the App is that it can be kept up to date by Monash as they explore the subject.    You will see that the diet is for IBS but it seems to work for some people.   If it doesnt work for you then there is a different diet developed by The Royal Prince Alfred Hospital in Australia (their allergy section) which has worked 100% for me. This is called the Low Chemical diet.    Note that the chemicals they are trying to avoid are mostly natural that are generated by the way the food grows or the way its prepared so its not things like pesticides specifically that are added by man.  Hence its no use saying "I have a terrific diet and only eat fresh fruit  organically grown"   Bananas, for example , are good when slightly green but bad for me if they are nice and ripe.   The food makes its own chemicals that are like poison to some of us.    Both diets are trying to find out what hurts you so you can eliminate them or limit in your long term "rest of your life diet"    You might be lucky and only have to avoid grasshoppers or unluckey and have to eat steak and potatoes with beans for ever.    Both results are worth it to people like us.  I suggest you try the FODMAP diet first as it seems easiest but that might only be because I am more familiar with it.

    I suggest you see your doctor as soon as possible to make sure he is happy about you adopting the diet because it might be hard on your body if its got some problems.  He might also be able to recomend a local  dietician who will be a big help   BUT ask before you visit if they have experience with the FODMAP diet before you blow your dough.

    Note that the FODMAP has spread all over the world because of its effectiveness against IBS and there are clinics and experts in many countries.   The Low Chemical diet has not spread so much for various reasons so experts are probably harder to find.   If you email the hospital they might take you on as a distant patient.  I have no idea if they would charge for such a service but I expect they would.    If you have any problems finding support let me know.   I think the dietician I see about the low chem diet would offer remote support over Skype or similar at a price.

    If you have any questions dont hesitate to ask and I will see if I kknow any answers.

    There is no reason why you shouldnt read up on the diet now and follow it from your next meal (start now with rice and fish or rare steak and potatoes decaf tea and coffee and lactose free milk )  Then make an appointment with a dietician for as soon as possible.

    There are some other things that might help and I dont think there is any harm to try severl lines at once with supplements rather than the evil drugs.

    Also search for ferrous biglycinate  (or diglycinate),  Vitamin B12 and Folate   Some of these things help- some of us and I think they will go on helping for a longer time than the drugs.   I hope you and I can both celebrate a 100th birthday witout RLS    Good Luck

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  • Posted

    Can't remember dosages for Pramipexole but you may well be augmenting. There are other Dopamine agonists Ropinorole, Neupro patches etc but you will need to get off Pramipexole first and would need something during that time e.g. Tramadol (an opiate). I came off DA's using Tramadol a couple of years ago and now just use Tramadol. Are you on any other drugs as some exacerbate RLS e.g. Amitriptelene, Omeprazole. Complete list of no no drugs on RLS UK site https://rls-uk.org/. GPs will be unaware of augmentation and RLS no no drugs (and even specialists sometimes!). Need to become an expert yourself using the various RLS forums and you WILL find some relief! If some days worse than others you could do a diary to find your triggers, eating late/ spicy food/ alcohol/ caffeine potatoes are mine!!! Have you had your ferritin level checked? You need to be around the 100 mark as an RLS sufferer and if not you could take iron supplements under guidance.

    Good luck!

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  • Posted

    I sympathize with you, my RLS is 24 hours a day, never lets up, will wake me up in the morning if I forget my pill at 4AM. Mother had the same thing. I control it with 3 - 0.5 Mirapex a day and it has worked well, so far. I had an uncle who had something like what you describe but he attributed it to war injuries. He drove and riding in a car with him was very interesting to say the least. I also think he had the "family tremor" mixed in. The one thing I might suggest is a second opinion from another neurologist or maybe a third opinion. I don't know where you live but the leading neurological centers can do some pretty spectacular things with these kind of issues today. If I had what you describe and I wasn't battling other things I would be getting on a plane for Swedish Hospital in Seattle Washington, USA, but there are other similar centers in North America and Europe. I hate to disturb your acceptance but you really don't appear to have explored all the possibities. I'm 68 years old with cascading autoimmune diseases, I just spent 7 years getting a myasthenia gravis diagnosis to go with my hashimoto's and sarcoidosis (in remission). I get the impression I might be slowly winning this battle and you certainly might also. But whatever you decide I wish you luck.

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    • Posted

      Hi I'm new to the forum. But feel I must get help for somewhere as the RLS is now happening most nights. I am currently taking 0.88 pramipexole  which works for me but have now been told that this is no longer available please Cavan anyone let me know if mirapex is the same tablet ? This is driving me crazy I have tried to stop taking them and the symptoms are worse. I take iron tablets and don't drink coffee late at night. If anyone can recommend something similar for me thanks as I also get the same feeling in my shoulders I have had this for approx 20 yrs 

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    • Posted

      Yes, Mirapex is pramipexole, a dopamine agonist.

      The preferred dopamine agonist in the UK now seems to be ropinirole (which is the only one I've taken for my RLS).

      Rotigotine patches are sometimes also used.

      Gabapentin and pregabalin, not dopamine agonists, only work for some people in some circumstances.

      Benzodiazepines, tranquilizers, are sometimes prescribed with some success.

      Painkilliers, opioids, are known to work, perhaps best of all, but only given under strict control, of course.

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    • Posted

      Thanks Robert I'm suffering at the moment every night and frustration is making it worse especially when working full time .

      I will give the above a try and cross my fingers. It's so bad I end up with bruises while banging my Leah's with my fists once again thanks 

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