So that's been ruled out, I now need to keep a food map.
It does seem, however, that it's connected to inactivity (in my case), if I rest early the RLS starts as early as 2pm, if I forget to take the Pramipexole, if I'm busy sometimes I won't realise until around 9pm when the sensations start.
A few years ago I was convinced that it was caused by being too hot🤒 in the groin area and change the type of clothing to help, if only it was that simple!
Hope you're all as good as can be expected. X
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I used to take pramipexole around 10pm and sleep. Had no problem with it. But glad I have given up. :)) How long have you been on prami? What dose?
I have been keeping diary ever since I gave up prami and that helps big time like Madlegs said. Distraction is a must when it comes to RLS too. I have now have a mild RLS since I have given up prami. I am very active as well (I think that helps too for sure ) I do get it odd nights and I end up taking iron bisglycinate and off to sleep again.
I think prami does more bad than good in a long term. Think about alternatives ?
I take 2x0.18mg at 5pm every day, sometimes I take them earlier, for instance today. I drove for two hours at lunch time and needed to take them at 2pm.
I've been on Pramipexole for 12 years at a low dose.
I also often take 1 co codamol 30/500 and 1 paracetamol to help me sleep.
This sleep thing is very odd, as I fall asleep very easily but generally wake up at 2-3am every night, I normally go to bed around midnight to 1am, but I sleep in front of the tv in the evening. I seldom go back to sleep after waking at 2-3pm. This explains why I'm so tired.
You say that you feel much better since stopping Pramipexole, can I ask in what way? I feel lathargic and cannot drum up any enthusiasm to do anything. I also suspect that taking Pramipexole has made my allergies worse. I may also have some of the compulsive disorders. But I am controlling these urges.
Wow , that's early! No wonder you don't get proper sleep at night! I used to get rls at night so never had my tablets that early. Hope you find a way that works for you. That's a long time to be on prami. Obviously it is still working for you! Co-codamol can give you imsonia can't it?
I feel free I feel happy! I feel more energetic! I feel strong! Prami did make me miserable! I just wasn't happy. I am not overweight but feel like never lost weight when I was on it. Like I said I am very active and exercise regularly. Since I have given up I lost 3 kg without trying!
Hope all goes well for you very soon! Keep a food diary ! And keep busy
I agree with you about the heat issue. I find it hard to keep my legs still in a hot bed and tend to use a summer weight duvet for all but the coldest winter nights. I'm with Madlegs1 on the food diary, but be aware that multiple food triggers make the issue hard to resolve. Also be aware that the common B12 serum test is not the only one, and is not infallible. b12deficiency.info/b12-test...
According to many if not most RLS docs, B-12 does not play a role in RLS. The critical determinants are total iron storage and sufficient dopamine in the Substantia nigra area of the brain.
And most RLS docs still don't have an answer to the cause of RLS because supplementing iron can make a difference for some people but not for others and increasing dopamine levels just makes the dopamine receptors down regulate so you get into the same hole as drug addicts.
Since I wrote this (seven years ago!) I have found that one of the major causes of RLS is chronic inflammation caused by our diets and that inflammation depletes iron so low iron is a marker for inflammation and the cure it not to supplement iron but to cure the inflammation as inflammation causes nerves to become hypersensitive which is the root cause of RLS.
Keeping a food diary is a good idea and it will probably help. BUT it is probably more efficient to follow a procedure that has been designed to discover the foods that are demonstrated to affect you. Of course I mean that I recommend that you adopt the FODMAP exclusion diet and if that works then re-introduce foods into your diet in a systematic manner that will identify whole groups of foods that you can eat in small or large quantities. If the FODMAP diet doesnt do a good job of identifying foods that you can eat then try the Low Chem diet. If food is the trigger then a systematic approach has got to be the best way of determining the triggers of your problem.
I am becoming some sort of anomaly! The FODMAP diet was like a miracle for me and then the low-chem diet was like a minor miracle riding on its shoulders. For three weeks in Thailand I decided that eating and socialising with my family was more important to me than sleeping (and if things became unbearable there was plenty of steamed rice and eggs to eat) Now I am back in Australia and I have been very half hearted about the diet but still no RLS.!!!!! (Well, perhaps the other night about 3am but it went away without walking around the block at all and I went back to sleep in a few minutes. I call that zero)
I have a bit of insomnia so I plan to go back on the low chem exclusion diet and see if I can achieve perfect sleep again but I could live with what I have right now if I have to.
So as usual, I suggest you try an exclusion diet to see if it helps you and then, if it helps, see if you can re-establish a sensible diet. Get help from a dietician who can tell you they really understand the diet It might work for you and it might provide relief in a week.
Your story is encouraging. I will try Fodmap, do you have any links to advice or recommendations on which foods you're avoiding?
I plan to stop tea and milk first, these are foods that I have everyday. I very seldom have a coffee, but will also avoid that too.
I will be doing this whist still on Pramipexole, I'd like to stop it but life would be unbearable. I need to cut it down and eventually stop altogether because I'm suffering augmentation in my arms.
I admire those who have successfully stopped Pramipexole, I think they may have stronger willpower than me?
If you are suffering with any augmentation for the Pramipexole, you really need to take care of the augmentation, as hard as it is to come off it, and taking a strong pain med like Tramadol will help. Trying the FOPMAP diet while still having augmentation then that diet will not help, nothing you try will help while having augmentation. the augmentation doesnt go away until you deal with it. Sorry is that sounds harsh.
Hi P, Your sleep situation sounds terrible and needs to be addressed. That is no way to live. Although it is by no means certain that the pramipexole is responsible for your early wakenings, I would be inclined to consider discontinuing it as a starting point (by very slowly reducing and if possible persuading your GP to prescribe Tramadol for the period while you are withdrawing).
There is no doubt that getting off pramipexole is very hard for most people but it is certainly possible and if you can get the Tramadol that would make it a lot easier. I gave it up last year and like Bkc says you just feel so much better when not taking it. I feel all the things listed in Bkc's post. I was also succumbing to compulsive internet shopping. Although within the range of acceptable, 2 x .18 is not a tiny dose and I would not be at all surprised if it is affecting you negatively. Moreover, there is a strong chance that it is making you RLS worse due to augmentation and if that is the case your experiments with diet are likely to be undermined.
Thank you so much for your input, I appreciate everyone's comments and help. With all this help I feel there is hope. I'll be off to the docs at the first opportunity.
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RLS Blood test results, complex and in French... 
Blood Test results
Ferritin test results 
Iron studies blood test results
Seeking thoughts on lab results (and my condition in general)
