RSL & Reflexology

[VJ29]

Hi All,

Just wondered what thoughts were on reflexology for RSL.

Mine sort of settled for a while when I started taking Pregabalin (200mg increased to 250mg recently due to breakthrough at night)and I also take co-codamol.

My legs/ankles seem to be starting now before I go to bed so it's hard to settle and sometimes just have to get up again and also waking me up around 2am when I have to get up for a couple of hours this used to be 5am. I then get discomfort again early hours so difficult to sleep in on the days that I have the option to do so.

I'm not sure if I should go back to doctors but if I do I will need to have a plan as she hasn't got the experience to advice me.

I have the very very odd good night but few and far between, I'm taking the Iron, Magnesium, B12 & D3.

Are there any thoughts that might help me and has anyone tried reflexology please.

Thanks in advance.

[Joolsg]

What time do you take the pregabalin. I found changing the timing has helped enormously as the half life of pregabalin is 6/7 hours. I take 50 mg at midnight and 100 mg at 1am.

However, I also take OxyContin 25 mg a day.

I don’t think reflexology will help but it may help you relax.

[VJ29 in reply to Joolsg]

Hi Joolsg

Thanks for your reply I take 50mg at around 4pm 50mg 8pm and 100 or 150mg at 11pm what does half life mean exactly never understood that and what type of medication is OxyContin and when do you take that please?

[Joolsg in reply to VJ29]

Hi VJ

In a medical context, half-life means the time that it takes for the concentration of a substance in blood plasma to reach one-half of its steady-state value (the "plasma half-life"). In other words how quickly it takes for the drug to be half out of your bloodstream.

In 6 hours, pregabalin has lost most of its effectiveness.

So, if you get your worst RLS between midnight and 6 am you should take 50 mg at 11, 100mg at midnight and then another 50mg only if RLS wakes you.

That way you control the RLS enough to sleep without breakthrough.

OxyContin is an opioid ( stronger than morphine) but in low doses helps severe RLS.

Take care

Jools

[VJ29 in reply to Joolsg]

Brill Joolsg that helps a lot thank you

[VJ29 in reply to VJ29]

Hi I’m still struggling to get even 1 night without having 2 breakthrough episodes getting up twice in the night.

I have 1 50mg around 5pm so that I can sit on an evening then 1 50mg around 9pm as scared to get into bed and it starts. Then 100 or 150mg around 11pm when I get into bed even then I wake at 1.30 or 2pm doesn’t seem to make any difference how much I take at 11pm I still wake for a couple of hours then again at 5/6am Depends how many pregabalin i’ve taken at 11pm as to if I take another when I wake or take co-codomol which I take 30/500 up to 3 times a day. I’m wondering if I need to be brave and try to move the 9pm dose to a double dose at 11pm this then gives me some to use in the night and early morning. How effective do you think the co-codamol are for me? Sorry my heads spinning with it. Trying not to go back to gp as I don’t know what to ask for next.

Thanks in advance

[involuntarydancer in reply to VJ29]

Pregabalin doesn’t work for everyone, unfortunately. This is particularly so if it is used on its own. You might need to add another drug into the mix.

It’s a personal view but for what it’s worth I don’t think there is much point in starting to chase symptoms with a single med - by increasing the dose every time it stops working. I suspect the brain will continually try to find a way around the medication and you end up increasing and increasing in a relentless spiral.

I can’t remember your history. Is there a reason why you wouldn’t consider adding in a low dose of opioid? That would seem to me the suggested next step (always assuming you aren’t taking/doing anything that is exacerbating your current symptoms).

Also depending on where you are based and what your current serum ferritin is, maybe you should consider an iv iron infusion.

I hope you find some relief.

[VJ29 in reply to involuntarydancer]

Thanks for the reply doctor has dismissed the iron theory my iron level is 73 which she said is fine and wouldn’t give treatment although I’m taking slow iron myself. I take co-codimol as mentioned do you think drop this and ask for something else? My stomach is not great so can’t some pain killers.

I’m based in the uk and my go at the moment won’t refer to a neurologist but then again I maybe should be on her doorstep more to push!

Thank you again I’ve far more confidence in this forum than my gp who has said she doesn’t know anything g about rsl I’ve previously augmented

[involuntarydancer in reply to VJ29]

Pity she wouldn’t countenance the I’ve iron. 73 is not particularly high for rls. There is some very persuasive research out there to suggest figures of around 300 are optimal. You should maybe try to track down some of the medical research and present it to her. I am too tired today to call to mind any locationsbut you could start by looking at the short clips of Dr Earley on the Johns Hopkins website.

Co-codomol is not a particularly strong pain reliever and it sounds as though you’d benefit from a stronger opioid. Targinact has been licensed by the EU for treatment of RLS - she might be prepared to consider that (unless she a particularly staunch brexiteer and finds EU endorsement off-putting). There is a good paper on opioids used in treatment of rls prepared recently by US experts that you could bring to your next appointment.

[VJ29 in reply to involuntarydancer]

Thanks so much involuntarydancer I will take a look at your suggestion and that of Jools and make an appointment with gp fingers crossed and so sorry your having a tired day