Another night begins...

[restlessstoz]

… and for the x'th night in a row, I'm here jiggling about and thinking I will still be here tomorrow morning doing the same. I go to bed but before or shortly after I go to sleep my legs start and I'm up... again. I distract, jiggle, tidy up, fold washing and go mad, then get back to bed again then about 45 - 60 minutes later, after a cruel taste of sleep, I am up again to do it all again until the dawn breaks.

I know I'm not the only one up at night but sometimes it's just about having someone else know the awfulness of being up when everyone else is asleep- or at least, able to lie in bed. I tried coffee this afternoon to see if that stopped my legs but then I went out to the garden to distract to I don't know if it worked.

I've bought folate and more iron and take the iron later in the evening. My pramipexole is down to a quarter of the dose I was on, and I will hold it there for a week or so. Though I wish I was off it all together. I don't know if it's making a difference except to keep me up- off and on all night like this! Maybe not so many episodes of RL in the daytime but I really don't know if that's related to the decrease or not!

I must try the smaller meals and see if that helps, and I don't know if it's coincidental but often when I need to empty my bladder, my legs are bad? anyone have an idea about that?

Also, I'm a blood donor and I have never known if it affects my legs or not? I have always struggled with having a borderline haemoglobin level and it rarely is on the higher side so 12 (120) or so but I'm currently due to donate again and don't want to upset my (non-existent) control and blood levels of drugs etc, and make things harder. Does anyone have any advice for me- or experience?

[Lapsedrunner]

Oh it’s such a pain isn’t it.

Have you had your ferritin checked? From what you say about your blood donations there’s a good chance that your ferritin is low (ask for the figure, as “normal “ is often much less than the 100ish level that we RLS people should aim for) I would advise you not to donate again at present until you know.

All the best

[LotteM in reply to Lapsedrunner]

I agree with lapsedrunner’s advice. If you’re ‘lucky’, iron will help, but it is a slow process. And you still need to come off the pramipexole completely. Good walkin’!

[restlessstoz in reply to LotteM]

OK. I will have to be patient. Thanks LotteM. You know, this would be a lot easier without the numerous triggers and without the complications from drugs.. If only it was simpler! I'm so impressed by the knowledge of the members here. I used to think that I was informed... and compared to some I was, but I'm a mere beginner here. Thanks for all the advice- I'm learning such a lot.

[restlessstoz in reply to Lapsedrunner]

I did have it checked and it was well below the 100. I think my neurologist is working on 75 being the new 'ideal' number for RL but it seems he's not quite up to date. I will have to make a concerted effort to get it higher. Any suggestions?

[LotteM in reply to restlessstoz]

See this paper: ncbi.nlm.nih.gov/m/pubmed/2...

[restlessstoz in reply to LotteM]

Thanks Lotte. I'll read that tonight.

[Hidden in reply to LotteM]

very interesting and informative article

[Hidden in reply to restlessstoz]

If you're a blood donor you'll keep losing iron in the blood donation which will make it harder to keep it high.

[restlessstoz in reply to Hidden]

Yes. I see that and logically I shouldn't do it. However. I've been donating for 45 years and it feels really bad to stop. However, I see that really there's no choice if I want to get my legs under control. One more thing that RL has taken away.

[Hidden in reply to restlessstoz]

It's ok to think of yourself sometimes! Donating for 45 years is an amazing achievement of which you should be proud. You've done your bit!

[involuntarydancer]

Restlesstoz, you are going through torture at the moment - you are in the throes of withdrawing from pramipexole. The rls you are experiencing during this time is likely to be the worst you will ever have. Once you have eliminated the pramipexole and your body has become accustomed to the reduced dopamine, your symptoms should improve appreciably. You will look back at this time and wonder at your own strength in getting through it. Hold onto the fact that things WILL get better. You will not regret coming off pramipexole in the long term. Most people require a temporary opioid to get through this process. Has your GP prescribed an opioid such as tramadol or oxycontin? Nothing less than an opioid will help with the dramatically worsened symptoms during withdrawal from pramipexole.

I definitely would not give blood when suffering from rls. It is not unlikely that it will affect the iron getting through the blood brain barrier which is the crucial issue. At least desist while you are in this crucial phase of reducing/eliminating pramipexole. I do find that emptying my bladder has a beneficial effect on my legs.

I and many others on this forum have been through this dreadful process and have had the awful experience you are going through of being up all night, night after night. It took some experimentation to find the optimal treatment, but at present I am living an almost normal life and rarely have symptoms of any degree of severity. I get reasonable sleep most nights. You will get here too. Keep going and keep posting. Good luck.

[restlessstoz in reply to involuntarydancer]

Thank you so much for your encouraging post. I guess my legs are much worse than normal so it makes sense that it's the withdrawal. Sometimes it's hard to see the wood for the trees.

I am already on tramadol, 150 XR during the day and 100 during the night,, plus Targin for times when my legs are worst. I do have some 50 mg Tramadol to boost in the short term when the other strengths don't hold the pain. I've found that pain from arthritis in my ankle and knees is one of the worst triggers for my RL so the aim has been to control the pain to control the RL. It's worked - sort of, up till now so I guess this is the withdrawal and I can look forward to improvements down the track.

I will hang in there and keep going with the future reduction of RL as my goal. Thanks for the

[Lapsedrunner in reply to restlessstoz]

DA withdrawal does ramp up the symptoms.

I'm now almost 4 weeks without any and things are much calmer, still getting only about 4hrs proper sleep per night but now feel that it's time to try the gabapentin that I have been prescribed. Fingers crossed

I think it's hard to be systematic about things...letting the dust settle from one intervention before starting the next so that we can see what is working. I have been so tempted to take half a pramipexole to see if I could get a proper nights sleep but am going to resist and see where the gabapentin gets me.

Stick with it!!

[involuntarydancer in reply to Lapsedrunner]

Well done for getting so far lapsedrunner. I’d say it’s definitely time to introduce new treatments. 4 hours sleep is not enough. It is very likely you will get your symptoms much more under control in due course.

[Tennwalker1 in reply to involuntarydancer]

Sorry I didn't get my reply finished. Thank you so much for your words of wisdom and encouragement Comfort during this time. I Omit pram #11 tomorrow night. Tonight I'm walking and voicing this message to you. My husband is telling me that I need to go ahead and take an oxycodone. But the pain is starting to let up a little bit now so maybe I'll wait till a little later tonight in order to get through it. Thanks again for all your help and encouragement good luck also to restlessstoz! I'm with you hang in there.

[Tennwalker1 in reply to involuntarydancer]

Thanks Involuntarydancer.

[Hidden]

Hi. Yes, I also find that emptying my bladder helps temporarily.

I'm really sorry that you're going through this. There were umpteen things that were more than torturous during my time of Hell and zombiehood (a.k.a augmentation), but one of the worst was that which you mention in your first paragraph: knowing that it was going to be the same night after night after night etc. I was so traumatized by that that, for a long time after I got through it, I got very anxious and annoyed whenever nighttime neared and it was time for bed.

I think you mentioned in one of your posts looking forward to the birds chirping in the morning, that that was your one plus of the night. For me it was the sound of the first trains in and out of the nearby station. 5:45am. The time that became my favorite time of night because it signaled the world getting up soon and (more importantly) the sun rising soon -- the sun rising and me getting a real chance at some sleep.

I hope that this time is as short as possible for you.

Empathetic hugs,

[restlessstoz in reply to Hidden]

Thanks for the hugs Jess. I was thinking about trying to get an hours sleep now that it's morning but as soon as I do, my legs start again! Never mind, I'll keep the end goal in sight and listen to all the advice and encouragement that I get.

[involuntarydancer in reply to restlessstoz]

Wow, Jess, your post brought back all the misery so clearly. Very emotive and beautifully expressed.

Restkesstoz, have you got access to Kratom? It is legal in some states in US and some people have posted that it helped a lot during dopamine agonist withdrawal. I find it very helpful with my rls.

[restlessstoz in reply to involuntarydancer]

I've never heard of it and have just looked it up. I don't think it's available in Australia though I may be wrong and could look for some on the internet. Will see what I can find out. Thanks for the tip.

[involuntarydancer in reply to restlessstoz]

I'd never heard of it either until I started to research my rls problems in earnest. I'm pretty sure it's not legal in Australia. It's not legal where I live either but I get it sent by post from Amsterdam.

[Hidden]

Hi I was told years ago that because I had RLS I could not donate. So I stopped.

[restlessstoz in reply to Hidden]

Do you know the rationale behind that decision?

[Lapsedrunner in reply to restlessstoz]

I guess it could be medication related, or not to aggravate RLS by dropping Hb? Blood and transplant service don’t want to damage donors health.

[restlessstoz in reply to Lapsedrunner]

They really look after us at the Blood Service. I've never really put down RL as a condition because it's more 'a nuisance' than an illness... Well, that's what I thought anyway until the last few weeks reading posts on this forum! Now I will review my thoughts on donating and give it a miss- at least until symptoms are under control. Thanks for the information.

[Restlesssinger in reply to restlessstoz]

But it IS an illness! Thank God for this community! I used to think it was simply a "nuisance," too! It was almost embarrassing to mention it to my husband. Now I realize I've had this since childhood and I'm in good (if at times miserable and sleepless) company. Best wishes (again).

[Moose76]

No wisdom to offer, as someone very new to RL. But I can understand the madness: so desperate to sleep as kids to sort and get to school - but just can’t. Every good wish for health and recovery.

[restlessstoz in reply to Moose76]

Thank you so much. I just hope that tonight will be better.

[Syvxdhkoy]

Thanks to information found on this site, I only take an iron supplement every OTHER night. Somehow it tricks your body into retaining it. That's really worked for me. Also what's helped me is making sure I'm getting enough potassium throughout the day...apricots, broccoli, low-sodium v8, etc. In the US, the recommended daily amount is 4700 mg and it's difficult to get there but the more I intake, the calmer my legs. Hope you get some rest!

[restlessstoz in reply to Syvxdhkoy]

Thanks for the tip about potassium. I've not heard that one before. Will look into it.