Sudden 10000% increase in severity

I've suffered RLS since my mid-teens, as I'm 45 now that's 30 years of it. With the exception of the summer of 95 when a useless psychiatrist who knew nothing shoved me on Sulpiride it's always been just about managable in severity. The day I told the idiot psychiatrist to stick his Sulpiride and I stopped taking them the relief was almost instant, coming within just a few days!

But this past month my RLS has gone back to, and far, far, FAR exceeded even the worst of those Sulpiride nightmare nights! And this time, for no apparent reason whatsoever!

For about 18 hours a day I cannot lie, sit or even stand still for more than 60 seconds without it feeling that my knees, ankles and both forearm muscles feel like someone is pumping them up with a car-tyre inflator. Eventually it feels like every muscle and bone in both arms and legs are going rip themselves out and start dancing an extreme manic voodoo ceremony across the walls and ceiling!!!!! And no, that's NOT hyperbole. It REALLY feels like this!

Between 9am and 3pm regular as clockwork, the symptoms reduce by about 95% - thankfully I can get some sleep then, at least - but that timetable isn't exactly compatible with normal daily life is it?

Even worse, another bizarre sleep abnormality has started up this past week. Probably as further side effects of month long artillery pounding this extreme RLS has unleased.

I have started literally "passing out" whilst on my feet! My head often spins as an early warning but even so, it still takes me by suprise!

Three times this week I've faceplanted walls as I've been walking alone, suddenly just "gone to sleep" and crunch, walked straight into walls! It happens when sitting too..... I have spilled several full mugs of scalding tea all over myself from passing out whilst sitting down! I nearly went face first into the bath the other day from the same passing out. It's only a matter of time this strikes when I'm walking down the stairs. Or when I'm driving. I've taken to going up and down stairs on my hands and knees, and coming down backwards, so if I pass-out I'll fall into the stairs, not down them. And I've barred myself from behind the wheel till this gets sorted.

Even more bizarre is sometimes I get hallucinations with it, either that or these passing-outs are actually me just narcoleptically falling asleep and these are micro-dreams..... but the other day I suddenly "woke" to find myself stroking mid-air, where I was sure my dog was standing only a second or two earlier. The most bizarre was with the dog again, this time he *was* in front of me wanting a fuss, but as I was doing so, suddenly "yellow painted on bones" appeared all over him!!!!! Then I *woke* again, and they were gone, an the dog was looking at me as if to say "WTH just happen to you then?". And no, I do not do illegal halucigenics of any kind.

What I do take is:-

Co-codamol 30/500mg, have been since April 2015 for a variety of pain problems, probably totally addicted to them by now, and also totally tolerant of them..... they used to help a little, but now do NOTHING to stop RLS!

Omezaprole, these are for stopping raging heartburn and acid-reflux, and shouldn't have any involvement with this RLS AFAIK.

Sertraline, these may well affect RLS however, but I've not bothered with these for a few months now.....

Gabapentin, prescribed these myself. Naughty I know. Seen them quoted as being RLS treatments, and I researched them througourly (sorry I just cannot spell that word) first. Anyway, keep it short. They don't do jack.

Quinine. UTTERLY. BLOODY. USELESS. The best my GP, who keeps you waiting 60 minutes for appointments that never last more than five, can offer. Actually he did mention this Ropinadrine (or whatev the hell it's called) but couldn't get himself un-obscessed (again can't spell) over the fact "gambling" is a side effect.

As you can probably guess from even the overall tone of all this, I am verging on suicide inducing stress levels, sleep deprivation and depression from all this. My constant pacing in and out and up and down every room in the house, covering probably 20 miles a night, is also doing the same to the rest of the family, and the dog!

I've even put on 3 stone this past 28 days, I means what else is there, other than binging, can one do at 3am in the morning. And 4. And 5. And 6. And 7.....

The only way I can think of ending this long post is with

"HEEEEELP!!!!!!!!!"

13 Replies

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  • OK, take a step back - things are not as bad as they seem, (but yes they are bad).

    You are writing almost exactly what I've experienced even down to the worsening in the 40's!

    When it happened me I was distraught. I was suicidal only I have a family and wouldn't do it but I prayed for death.

    There is a worsening of RLS and mine went form severe in the legs to severe over my whole body with it lasting 18-20 hrs a day it was HELL!

    Now you need to change that Dr, Quinnine is no good for RLS and there are a raft of meds that can be used to treat:

    From Drs you can get various Dopamine Agonists, (lots of nasty side-effects read up but Neupro patch has the least), OPIOIDS - there are a huge variety and it can be hard to get them due to addiction potential but Targinact is specifically designed for RLS so could be a good bet, Gabapentin type including Lyrica - not up to much imho, and the list goes on. More to be found here:

    rlshelp.org.

    There is cannabis and Kratom which you can get - I highly recommend Kratom - I started it when things were at its worst and for the first time in my life, (I've had RLS longer than I can remember!:( ), my body was quiet. It is much much less harmful and much much more effective than prescribed drugs - there are a few of us on here that use it.

    I've stopped the Kratom as I'm on the Neupro patch and Targinact and tolerating both - I am saving my Kratom for when they become ineffective, (as most drugs do).

    Good luck and don't worry you will get lots of help here - your suffering is near an end!!

  • So sorry for you,, I know we all suffer it's so b cruel and unfair, I to have been on the edge of suicide we always seem to find a way back, the right people are on here to help you, i see you take some of the pills I take ,omeprazal ,sertraline codamole and I take others as well ,,,I am just coming back up from being on a bad low ,lack of sleep doesn't help how do you mean you prescribe for yourself ? It sounds as if you should get back to a doctor pronto ,,will look in tomorrow and see how you are

  • So sorry you have had to go through what you have done. Most of us on here have been where you are and fortunately we have this forum to lean on. There are many caring ,knowledgeable people on here ready to listen and share, so please use this forum to let off steam. I would suggest that you get off the quinine ASAP, not good for RLS. Also I would find another doctor who will listen and maybe see if you can get referred to a neurologist . Hang in there, my husband finally bought me a new carpet after wearing a figure of 8 in the old one. Cheers Jimeka x

  • So sorry to hear about the increase in your symptoms. Has your diet changed in any way. Just got over an increase myself due to chocolate intake! The falling asleep sounds a bit like narcolepsy but take others advice and go to your GP and ask to see a neurologist. Hope things improve soon. Jigglylegs

  • WE CAN ONLY SYMPATHISE WITH YOU AND SAY KEEP YOUR CHIN UP.... AS WE ALL KNOW IT IS SEVERELY DEPRESSING AND AS I HAVE SAID MYSELF IT DOES GIVE YOU DRASTIC THOUGHTS..... ALL I CAN SAY IS, AS I DO, MAKE THE MOST OF THE GOOD DAYS

  • I cannot empathize because my problem is mild compared with yours, but I do sympathize. I do get some relief in my legs after robbing the down with a saturated solution of Sodium Sulphate. The flakes are relatively inexpensive. Sending you healing.

  • Consider the Gabapentin. Vision problems - feel like your insides want to burst out of your body and lots of other weird feelings? I tried Gabapentin. It worked on my RLS but I couldn't even tolerate 100mg without these side effects!

  • Hi sick sick sick of RLS,how you been last night thinking of you have you thought any more about seeing a different GP might be a good choice if you've been feeling so low leave you with a hug

  • Hi so sorry to hear of your . First can u change your GP? He sounds very unsupportive. You really need to seek medical help asp.

    Secondly have you had your thyroid levels checked? In late 2013 I put on 3 stone in a short space of time, was extremely sleepy and it culminated in me not being able to understand anything on my computer screen at work. I had a meltdown and my very sympathetic GP sent me for a range of blood tests which found I was suffering from extreme hypothyroidism. I was off sick for 4 months. 2 years on my thyroid medication has stabilised my condition and I am relatively well. I have chronic RLS and PMLD and take Ropinrole for RLS and sodium volproate for the PMLD which keeps things under control most of the time.

    I wish you well and hope you get the help you need. I suggest before you see GP you write down your symptoms and what you want to say. Be calm but assertive, his job is to help you and you are not leaving until he does so.

    Ps quinine is only helpful for very mild RLS.

  • Listen SickSickSickofRLS

    We are all sick of it. You must get a neurologist who specializes in RLS. I see youare not in the U.S. where I am, but your story is familiar to me. I told a good friend who was a doctor that I was thinking about ending it because I had not slept in days and had dreams while awake. She got me on Maripex which ended my RLS as long as I took it regularly. I still like the way I felt but became a gambler and lost a fortune, I had to change to ropinirole timed release.

    I get along pretty well taking the maximum dose, but go to sleep no matter what I am doing, such a writing this blog, I have gone to sleep twice, I have mini-dreams whilst I have my eyes closed. If I know I need to read and understand something or if I need to drive somewhere, I take a drug called provigil when the IIsraeli's developed it, but we have a generic that is more affordable called modafanil. I take a 200mg tablet and it keeps me awake and alert for 8 or more hours.

    Get help---I did and am glad I did. Listen to me…life isn't perfect but tolerable now and I am not tempted to off myself any more. I am tired a lot, but then I am pushing 80 and my future looks dim, a sick wife, and sons who don;t seem to care if I am here or gone, maybe I am just worn out. I have memory loss, Oh did I tell you I have memory loss.lol

  • I am so sorry to hear about your RLS being so unbelievably horrendous . I moan about mine but compared to yours it is nothing . I do hope you get help sooner rather than later but most Doctors don't know what to do for us unfortunately.

  • Has anyone tried Magnesium? I was told about it by friends from a group on Facebook. They are from Fluoroquinolone Toxicity Group. They all know a lot about healing the body holistically. So back to the Magnesium, we are all extremely low due to damage to our bodies, stress and our food no longer has the minerals needed for our health. So RLS can be managed! I am having great success with it!! I wish you all the best!!

  • Took your advices and tried a different GP at the same practice, luckily we're not tied down to just the one GP. This one at least did a full examination of my legs and checked out all my reflexes - which were all fine. That ruled out a few other neurological condtions he said. But at first he said "it can't be RLS" if you're getting it in the arms as well!!!!! Good job I told him you can get RLS in the arm! He checked it out in of his medical texts, and was "oh, so you can"..... shows you how little most GPs know about RLS! Anyway he said dump the quinine, that's for cramp, a vascular disorder in the legs, not a neurological one, and he's put me on Pramipexole 0.088mg one a day. Probably the lowest standard I'd guess, just to make sure the stuff agrees with me.

    First night was a bit easier THANK CHRIST! It didn't stop it, but I got at least a chance at sleep from a hour after taking the tablet at 10pm up till 4am, when my legs kicked off again!

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