Diabolical sweet spot

[ookla]

If RLS was just a little less severe, we could just ignore it. If it was just a little more severe, it would get more attention and possibly better medications. This devious, diabolical affliction has found just the right level of severity to make our lives miserable and no one else care.

[Hidden]

With you on that ookla.

[involuntarydancer]

Very well put ookla. Part of what makes the condition so isolating is the difficulty non-sufferers have in understanding how devastating it can be. I find it hard when my friends try to help me by patiently describing to me how they deal with their insomnia. I appreciate that any sleep deprivation is dreadful but they have no concept of what it’s like to cope with six weeks of getting maybe 2 or 3 hours maximum sleep at night - trying to catch up at the weekends by sleeping from 7am until 11 or 12 if the legs permit even that.

[Hidden]

I think it's easily severe enough to warrant more attention. I agree though that folk who don't have it just cannot tune in to what really horrible effect it has.

And though I've said before I wonder if the most interested researchers might have it themselves i think actually what we are stuck with is non sufferers or mild sufferers. I always feel very pathetic trying to explain it to folk as if I am some sort of melodramatic wimp.

But for potential researchers with it to a severe degree it disables their brains to such an extent like it's done to mine through sleep deprivation, that they can no longer think straight and think what to do.

I used to be an intelligent person ( though I say so myself! ) and now while trying to live a 'normal' life I have been attending an Italian language class. I am by far the worst in the class, can't retain the words or grammar or how to speak it and I hate this as I used to be good at languages. You feel such an idiot, yawing and stumbling your way through the day.

[involuntarydancer in reply to Hidden]

Alison, you are still a most intelligent person. Your posts show this very clearly.

You do, however, sound like you are at the end of your tether.

I know you have exhausted the pregabalin route and you are very anxious about taking stronger pain relieving medication - with your background no doubt you have seen all the worst of it.

But there are many who find that resorting to the stronger opiates enables an almost normal life. If you look at the discussion board to the US site rls.org there are quite a few on methadone and in Europe targinact (oxycodone/naloxone) has been formally endorsed by eu commission for treatment of rls. The naloxone might also help with issues of ‘bunging up’.

I took OxyContin at the highest dose recommended for Rls (30mg daily) for a few months last year and I was able to discontinue it. I wouldn’t say it was exactly enjoyable but it was do-able so even if you develop dependency you can always discontinue it if you don’t like it. Moreover you could well get away with a much lower dose - I took it towards the end of a prolonged and traumatic withdrawal from a dopamine agonist and I think that was why I needed a larger dose.

Obviously I have no way of knowing how you are managing minute to minute, day to day but your posts on here suggest there might be some benefit to rethinking your current regime.

I hope I’m not overstepping the mark with these observations. I am conscious that you have more reason than most (and certainly than me) to know what you are doing but sometimes when it comes to one’s own treatment, it can be more difficult to see the wood for the trees.

[Hidden in reply to involuntarydancer]

Thank you. You are certainly not overstepping the mark. Any ideas and comments are extremely welcome.

If I've learnt anything at all over the years it's that Drs are just people too - well I always knew that - and though we have an overview due to training there might be some things we know more than others, that is only because we learnt it and others are just as capable of learning as we are.

Also it can be hard to get things into perspective as a Dr as you always remember the problems which have arisen in others.

And yes, I am very fed up with our horrible condition as you all are.

But I am pretty convinced that Pregabalin made we worse in the long run and so I am so so wary of allowing anything else to cause me any problems of any sort. The brain is a funny thing that we just don't understand and seems to want to maintain the status quo by hook or by crook and I am terrified of opiate addiction.

That podcast that someone posted about the other day by an specialist neurologist whose aim was to show that opiate prescription was perfectly justified and OK did say that there wasn't no risk.

So I'm struggling on hoping I can find a more natural cure.

Every night I go to bed with hope not dread and every night is still a nightmare. Some of it is indiscipline on my part born of fatigue when I grab eg a biscuit or eat too late or whatever and i need to try to be strong and hope someone solves this soon ...... except says she somewhat dejectedly, every 'miracle' seems so far in the end to not be the miracle it was thought.

Sorry, thats not a very positive message to others but to some extent I think at present what we hope for might be a hope too far and just a few hours sleep in a row might be a realistic aim

[ookla in reply to Hidden]

When I took gabapentin (related to pregabalin), it definitely made me worse off. I had slight problems with coordination (walking) and my vision was a little off, but the biggest difference was my memory - I couldn't learn anything new and having a normal conversation could even be difficult, with me struggling to recall basic words or facts. It was hard to deal with both professionally and socially. It did clear up once I stopped taking it.

As far as opiates are concerned, I understand your hesitation with regards to addiction; however, in my experience, it hasn't been an issue. I think people get addicted to something they don't *need* but perhaps enjoy. For example: a surgery patient taking opiates for pain... the opiates take the pain away, the patient heals, the need for the opiates is gone, but the patient keeps taking the opiates because they enjoy how they feel, and heads down the road of addiction. In our case, the *need* for the opiates never goes away. It may be constant and lifelong. I have never felt any euphoria from taking opiates. There is something wrong in my brain that needs opiates to correct/block it. I take opiates to feel as close to "normal" as I can and remain functional/productive in society. I am grateful for that small bit of relief I get, I would never jeopardize it by taking more than I need and/or more often than I need it. If you've been suffering for a long time and finally found peace, I think that would be enough for you. There is a risk of addiction, but statistically, those who take opiates for medical reasons stay in their lane and not abuse their medication. Eventually you reach tolerance and might need to increase your dose, but tolerance and dependence aren't the same as addiction. I can't imagine how I'd survive without some form of narcotic to help me deal with this awful affliction. If you need it and it helps, that will be more important to you than chasing a high. But the odds are in your favor that you would just feel "normal" and not feel any urge to abuse it. I really think it's worth a try - and if you find yourself straying or tempted to stray, pull the plug.

[Hidden in reply to ookla]

Thank you very much. I know that makes a lot of sense. You wouldn't happen to be medically qualified would you or perhaps you've gleaned this info over the years.

It reminds me of the situation with the poor sufferers of eg bone pain from cancer secondaries. The dose they needed relieved the pain with little or no side effects. If the bone was then treated with radiotherapy and removed the cancer and therefore the pain suddenly they had awful side effects from the opiates and had to stop them.

I'm still wary though. I'm not searching for a high and don't get a high. I don't like alcohol either and don't like the feeling it gives (pre RLS, a no no now of course )

I understand the theory but I'm still wary in practice.

When you prescribe medicines for over 40 years you realise what a responsibility it is and that none of these things are 'smarties'

( of course bad for those with RLS! )

Thank you very much for taking the time to reply so fully.

I think the Pregabalin also made my brain less effective somehow like Gabapentin did to you and I used to get the names of animals mixed up much to the amusement of others eg giraffes were zebras and vice versa

[ookla in reply to Hidden]

Unfortunately, no, I'm not medically qualified - I've just been taking opiates since 2012, but everyone's mileage will vary. I was not comfortable taking them at first. I've only been drunk once in my life (when I was 18 on our senior cruise) and haven't touched alcohol besides that. I've never tried any illicit drugs, not even pot (although my brother insists that's the cure for everything). But after trying requip, pramipexole, nupro patch, horizant, gabapentin, baclofin, klonopin, amitriptyline, valum, xanax, 5-htp, restful legs, melatonin, L-tyrosine, co q-10, vitamin d, and so on and so forth, I started wondering what would happen if I stabbed my legs - would real physical pain chase the phantom feelings away? At that point, it seemed opiates were probably a safer option.

I was very worried that I would get high, I'd lose control, I'd like it too much, my personality would change, it would ruin my marriage, etc. But I was desperate. And I'll never forget that first time. It was 7:00 pm. We were sitting down to watch TV. I took my first dose of Tramadol. 20 minutes later, it started in my toes and rolled up my foot to my ankle and calf and thigh (like I was dipping my foot into a pool and slowly wading deeper). My legs were quiet and calm - no need to move them, rub them, scratch them... in fact, for the first time, I wouldn't even have noticed them if I weren't paying such close attention to them. It was the most wonderful thing I've never felt. I wasn't stoned or high, I felt fine. I've never felt fine before. It was amazing. I stayed up all night just enjoying the ability to lie in bed all still and comfortable like a "normal" person.

Granted, after three months, I became tolerant and needed to increase my dose and my results have never been that amazing again. I would say now it kind of turns the RLS down a little bit so I can function around it. Kind of like when you're next to someone who's snoring really loud, so you put in ear plugs - they're still snoring, you can still hear them snoring, but the plugs hopefully dampen it enough that you can deal with it and eventually fall asleep.

I hope you find an option you're comfortable with. And I hope you find relief soon. Best of luck.

[Hidden in reply to ookla]

Thank you.

I recognise that lovely feeling you describe. Sometimes when I've been awake many times and go back to bed in the morning around 6am the RLS wears off and I suddenly become aware of that blissful feeling and sort of drink it in.

Sometimes as I have a neuropathy it coverts to a warm, buzzing, still feeling and I just pay attention to it with joy.

I bet there are others who recognise this too.

[involuntarydancer in reply to ookla]

What a great post. Thank you, Ookla. I too have tried a lot of the things you list. I also remember very well the first night I took opioids (OxyContin in my case). I was overwhelmed with anxiety about it but then the glorious calming of the legs ...

[ookla in reply to involuntarydancer]

I was on OxyContin and it was working pretty good, but because of the "opioid epidemic," my insurance company took it away.

[involuntarydancer in reply to ookla]

☹️

[Retren]

ookia as far as I am concerned it is as diabolical as I can deal with and I am sure there are many who agree with me.

[nopeno1home]

Well said. Maybe we should have people video us when we are having an episode. Cause you know you never can have it happen at the drs office

[involuntarydancer in reply to nopeno1home]

Good suggestion.

[Hidden in reply to nopeno1home]

Good idea though unfortunately I doubt that a video of me would give any hint as to what is going on inside and the horrible feeling it is.

It might be worth trying to get as many videos as possible taken looking at a bed though as I think from what I find when I wake that I am likely to have been thrashing about before it wakes me and I thrash about more if I try to go back to bed before it has properly worn off which is of course difficult to judge. It would also be very useful for folk to watch just how often you wake and just how little proper sleep occurs each night

[Hidden]

Yes, it sure is diabolical and no, people don’t understand the torture we go through (no matter how many times we explain it to them)!

When I saw my psychiatrist last Monday, he said that I was making it sound as though I hadn’t slept in weeks. Ouch, did THAT sting. I got angry at that (and rightly so). I only say what’s true! I was about to walk out of his office, but then he quickly backtracked. Geez...and I thought this guy who I’ve seen every other week for more than a year understood me! Guess I was wrong...☹️

[LotteM in reply to Hidden]

Maybe we should invent a pill that gives the person that takes it rls - immediately and for 10 min only. But maybe that is just straight out diabolical. Still, it would be highly effective for raising awareness. Dream on, Lotte!

[Hidden in reply to LotteM]

Yes, it would be effective in raising awareness, but yes, it would also be diabolical. Unfortunately....