Lack of sleep

[Hooc]

Hi I can barely function just getting over a bad case of flu but coupled with the rls I haven't slept for days on end and I'm getting to the end of my tether. My rls which usually started early evening has now progressed to all day. I can hardly function going ti try my neurologist on Saturday not holding out much hope my go said the would probably give me more drugs but got to the point where I am clutching at straws I. Can only describe the rls as torture.

[involuntarydancer]

Hooc, this lack of sleep becomes part of the problem. RLS seems to feed on lack of sleep. You really need to get something to help you get a few good nights of sleep. I would strongly suggest that you press your GP to give you a temporary prescription for codeine, tramadol or oxycontin. That will get your symptoms under control so that you can get rested and consider where you go from here.

Are you still on the 2 x 0.88 pramipexole? Maybe you could try adding in an anti-convulsant (gabapentin or pregabalin (lyrica)). These drugs can be very effective - particularly so for those who have not augmented on dopamine agonists. Unfortunately they do require to be titrated up so you are unlikely to get relief immediately (although it is not unknown). In some people it takes weeks or even a few months before they really start to see the benefits so the codeine/tramadol/oxycontin would tide you over.

It is well recorded that rls seems to respond better to a number of drugs at a low dose than to a single treatment at a high dose so it would be a good idea for you to add in something in addition to your pramipexole (if you are still taking that).

Finally, I have you had your serum ferritin tested? I know you have had trouble getting your doctors to engage so they may not have thought to do this. You need to get the actual figure (they will try to tell you you are 'normal' but normal for rls is over 100 whereas for the general public it can be as low as 20). Raising iron levels improves symptoms in most (though unfortunately not all) sufferers. It can make a dramatic difference to how bad your symptoms are.

[Hooc in reply to involuntarydancer]

Hi Involuntary dancer thanks for the reply. I have been taking Pramipexole 2 .18mg per night I don't know what the safe max dose is? But not effective any more. I have been prescribed Zopiclone 7.5 mg sleeping tablets but I am reluctant to keep taking them(addictive) maybe I will be forced into taking them just to get some sleep!

[involuntarydancer in reply to Hooc]

Hooc, the current upper limit for pramipexole is 0.25mg daily so you are slightly over with your 0.36. I would not go up any further and I horribly suspect you are augmenting on the dose you are on. At least it is not a terribly high dose (there is one poor soul posting on here who is taking 3mg daily - a huge dose - I dread to think what his/her withdrawal would be like).

I have zopiclone tablets myself but hardly ever take them. I find they make everything worse. They make me very dopey and drowsy (as you might expect from a sleeping pill) but they are not strong enough to override the restless legs which continue to wake me up but now, although I am being woken up, it is even more difficult to do anything about the rls thanks to the dopiness induced by the zopiclone. In other words they are worse than useless - that is for me of course -you must bear in mind waad (we are all different).

I wouldn't let worry about addiction problems stop me from trying them. I don't think you would become addicted for trying them for a couple of nights. The opioids I was suggesting are also addictive but I would still say it would be worth trying them for a short stint to get some sleep. I don't think you would get addicted over a period of a week or so.

I managed to stop taking oxycontin even though I was on the max dose for about 3 months (can't remember exactly how long now). Even though coming off oxycontin was very difficult, I have no regrets about taking it when I did. I don't think anything else could have got my symptoms under control at that time. When rls really takes hold like that, it can be very difficult to regain control.

[involuntarydancer]

Re-reading your post, it is possible that you have augmented on your pramipexole as your symptoms have extended to all day. This could just be because you are so tired, however. Get an opioid and see how things go but it may be that you will have to withdraw from the pramipexole due to augmentation.

[Hidden]

+1 on what involuntarydancer advised and adding that a gluten free and vegan diet. I have done this and am symptom free. My body has never NEVER been this peaceful.

ALSO a lot of drugs add to the sleeplessness. I was on Neupro patch and Tramadol along with Targinact. I stopped the first two and have regained a lot of my mind - the drugs were leaving me doped and unable to think clearly. I still take the targinact for pain issues but am not waiting to get it in me to alleviate RLS symptoms.

Definitely look at augmentation it is very common among RLS sufferers from what I see.

Hope things improve soon, take care.

[Hidden]

I also describe it as torture. And Hell on Earth. And more suffering than ANY human being should EVER have to gothrough.

It’s safe to say that we’ve all been where you are and that we’ve all gotten to the point where giving up seems to be the only way out.

Please don’t give up. It will get better. I don’t mean to toot my own horn here, but those words of encouragement are coming from someone who went through 7 months of very little sleep in 2015 and came VERY CLOSE to giving up. I am lucky to be here, you are lucky to be here, I am (and continue to be) a survivor, you are (and will continue to be) a survivor.

Good luck to you!

[Hooc in reply to Hidden]

Many thanks for all your kind words and encouragement you have probably all been there but at 4am after been awake for 6hrs trying to sleep and waiting for the dawn to come uo(I live alone) the mind doesn't work properly and I would give all the money in the world for a few hours sleep I'm not thinking straight at the moment and a bit over whelmed with all the information the flu doesn't help but I will bat on until Saturday when I see my neurologist and then try and formulate my future. The dreaded rls has taken over my life

[Hidden in reply to Hidden]

I bought a few drugs off the internet when it was legal to do so and have enough here to kill myself several times over. I sat looking at what I have when things were at their worst, (20+ hours of RLS over my whole body per day and no treatment for over 6 months extreme pain and suffering). I would never have thought then that I could find a solution only a few years later - imagine how pissed off I would have been if i had killed myself only to find out there was a solution

ONLY that I am a father I would be dead, I know that as I was done with suffering at that stage my whole life was blighted with RLS. I know the devastating effects of suicide on a family and know that I couldn't do it to my ones. I know I will never kill myself while I have them, I can tolerate the suffering if it means that I am not damaging them.

In short there are always solutions and suicide is too final a one that doesn't solve any problems only creates more. I learned loads on here that has helped and brought myself to my solution.

[Hidden]

Hooc: I read your post and I completely and thoroughly understand your situation. You are not alone. Don't give up yet and don't give in no matter how miserable you feel. I know that is not easy but please know that I and many others understand what is happening to you. I once went 33 hours without any sleep at all. You are very right. It is indeed torture or in my case I call it my life in hell. I have had severe RLS for years and am just coming though a bad situation involving change over of drugs from Mirapex to Sinemet and Gabpentin. I was on Mirapex for years and it seemed I had to take more and more of the drug for it to be effective which mean the side effects were terrible. I am off Mirapex now but had a very difficult time doing it. In fact in one instance I was taken to hospital by ambulance. I am doing much better now with the Sinemet and Gabapentin. I can get a reasonable amount of sleep. You have been given good advice by Involuntarydancer who seems to understand how certain drugs work and how to use them according to the situation you are in. So hang in there. You are not alone and there are many more going through those difficult times with RLS. and all RLS sufferers stand by you. How I wish that the medical profession were familiar with and understood the challenges of RLS sufferers, but unfortunately in most cases they don't anything about it. I have this hope that you will soon find relief. Let me know how things go for you.

Lonely7

[involuntarydancer in reply to Hidden]

Lonely7, I second your wish that the medical profession were more familiar with and understood the challenges of RLS. As it is, I think we have to be our own experts.

Incidentally, be cautious about sinemet. It is in the same family as mirapex and can cause the same problems. Keep your dose as low as possible and don't increase it if you find it stops working. Use the gabapentin instead. You will probably find that eventually you have to stop sinemet also. At that stage you could consider using opioids, at least to help discontinuing the sinemet.

I hope that you continue to get great relief however and any changes you might need to make eventually are a long way off. Also, apologies for the unsolicited advice. It's just that I really wish someone had pointed these things out to me when I walked into the misery of augmentation and the torture of dopamine agonist withdrawal.

[Kayakcarole]

Some suggestions that have worked for me:

Try an energy medicine practitioner. I have really found some relief here. Techniques can really help. Try lightly stroking your thighs and/or entire leg in a large figure 8 pattern for as many minutes as it takes to begin to lessen the intensity.

As your doctor about switching you to Low Dose Naltrexone.

Peace to your heart. 💗

[Kayakcarole]

Totally agree with involuntarydancer about serum ferritin levels. I take a non-constipating iron along with vit C daily. Need to recheck levels often.

[Hidden]

I so feel for you. 2 thoughts. 1. I agree with ID that lack of sleep causes a worsening cycle of RLS. 2. Did you take any over the counter flu remedy and might you still be? There are all sorts of things in these that can cause worsening of RLS. Plain eg Paracetamol if there is no reason for you not to take it is just as effective for flu and doesn't make RLS worse.

[gypsy49]

Know exactly how you feel (hell on earth) very rare i got to bed before 6am then only sleep hour or two sometimes not at all im on Gabapentin and clonazepam not that they do anything other than the Gabapentin has stopped me getting neuralgia . Hope you get sorted soon . My RLS is 24/7 along with BFS (Benign Fasciculation Syndrome) both of which are a royal pain in the backside .