hi i am new

[datsoon1]

hi i am datsoon1 have had rls for more than 30 years,had a car crash 14 years ago so now have bad walking,i have glaucoma and am very quickly going blind,

[Madlegs1]

Sorry for your experiences.

What medications are you on for the rls?

[datsoon1 in reply to Madlegs1]

i am on levopada

[Madlegs1 in reply to datsoon1]

And the dose?☺

[datsoon1 in reply to Madlegs1]

50mg/200mg, it seems ok if i get the timrs right,if not oh hell

[Madlegs1]

If it's working for you within those parameters , then I wouldn't mess around.

I don't have direct experience of Levadopa- it is a Dopamine agonist and may give rise to augmentation - but doesn't seem to be affecting you in that respect.

Good luck.

[datsoon1 in reply to Madlegs1]

it doesnt always work,even with sleeping pills and orramorph for other pain,i wish there was a pill that worked,,

[nightdancer in reply to datsoon1]

One thing to remember is that there is no one med that works 100% of the time. many people with RLS have to take a "cocktail" of meds. Levodopa is the "old fashinoned" dopamine med, so it may backfire on you. But , if it works most of the time, then that is a victory of sorts. maybe a extended relief form of a dopamine med would help you more. Something to think about it, and yes , timing is everything.

[Bkc1777]

Hi there,

Welcome on board!

There are loads of alternatives so please research to see what suits you best!

I was on DA medication (pramipexol) for 8 months but after researching a bit I thought I better give up before it stops working! I am now only taking iron bisglycinate and coping with rls. It doesn't work for everyone but like madlegs said if you are happy with the medication you might as well stick to it. If it isn't working then maybe have a look at rls-uk.org/ site to see what is suitable for you after disgusting with your doctor?

Help is at hand here,

B.

[datsoon1 in reply to Bkc1777]

hi there, datsoon here after a year who says i have rls of hell with my health i have finally found a doctor who says that i do have rls and been put on Gabapentin 300mg,what a relief.i thought i was going mad but at last i had a good nights sleep in over 50 years,yes 50 years,,, thank goodness someone finally listened to me

[Madlegs1]

You are certainly careful about your information release😂 Oramorph is an opiate which by itself should be very effective in treating rls.

The Levadopa is an outdated med for rls. You should do some research here and particularly on" rlshelp.org" and could even email the Dr on that site with ALL your details.

Cheers.

[datsoon1]

hi madlegs i am always careful about the information i release, only my late husband knew most of me

[Hidden]

Hi and welcome datsoon1. Sorry you've had to come here but on the plus side, I'd doubt if you'd find a better spot to learn about RLS.

That is a real b1tch about the glaucoma - as if things weren't bad enough with the RLS, sometimes when I am feeling sorry for myself over the RLS and whatnot I forget there are many suffering more. Have you considered cannabis for the glaucoma?

ncbi.nlm.nih.gov/pmc/articl...

Another added bonus is it can help with the RLS too.

Take care.

[datsoon1 in reply to Hidden]

my late husband was a cannabis user,it made him paranoid it used to make me sleepy. now when it all gets so painful,i think there is always someone worse off

[Hidden in reply to datsoon1]

Different strains do different things. I would have got paranoid if I took too much or if it was a certain strain. High CBD ones can mitigate that a bit.

If you've tried it before then there would be little harm in trying again. I tried cannabis as a late teen and didn't like it - made me paranoid and sick. Desperation and advice from a friend drove me to try it medicinally and low and behold success. A good indica strain can leave you sleepy and relaxed if nothing else.

[datsoon1 in reply to Hidden]

have given up smoking nowadays,thinking back on a misspent youth,i should have been young now i would have used it better,now just an old hippie,i dont remember signing up for all this pain!!!!

[Hidden in reply to datsoon1]

I know what you are saying, no one told me that I was going to have to suffer so much

You can always vape or make oil or butter with it it's a lot more palatable that way.

PS - you're never too old to enjoy your youth!!

Take care

[datsoon1 in reply to Hidden]

thanks,now adays as long as i dont upset anyone i just do my own thing

[involuntarydancer in reply to datsoon1]

Youth is truly wasted on the young.

Datsoon you could consider taking cannabis as an edible to avoid smoking. I make it into cannabutter- loads of recipes online - and then use it in cookies or mix it into a Nutella-like paste. I don't find it particularly good for the urge-to-move rls symptoms but Nothing works so well for getting me a good nights sleep.

[Bkc1777 in reply to involuntarydancer]

Is this even legal?

[involuntarydancer in reply to Bkc1777]

It depends on where you live.

[Bkc1777 in reply to involuntarydancer]

🇬🇧?

[involuntarydancer in reply to Bkc1777]

I am sorry to advise that any canna butter making activities would place the perpetrator on the wrong side of the law in your jurisdiction

[datsoon1 in reply to involuntarydancer]

lighten up for goodness sake

[Hidden in reply to Bkc1777]

illegal but by no means immoral. In fact the most immoral thing around the British drug industry is the Misuse of Drugs Act - a travesty designed to target the already marginalised poor!

[Bkc1777 in reply to Hidden]

Thank you. Yes whether is morally right or wrong, I still like to know if I am actually breaking the law! But I guessed I would be. :))

[datsoon1 in reply to Bkc1777]

if you are enjoying yourserlf you will be breaking someones law no doubt

[Bkc1777 in reply to datsoon1]

I think you getting me wrong. But never mind.

I am not using anything other than iron for the moment.

X

[involuntarydancer in reply to Bkc1777]

I would definitely not use anything else if iron alone worked for me ... no matter how illegal and/or enjoyable it was. I hope it continues to work for you, Bkc, for a long long time.

The effect of my rls has made considerations such as legality seem very much a side issue to me. Though I suspect I might see things differently if I were viewing them from the wrong side of a dock brief! Don't much fancy the prospect of rls in an incarceration situation - even if it meant a ready access to the type of drugs that I find so helpful!

[Bkc1777 in reply to involuntarydancer]

I wasn't replying that to you dancer it was to datsoon

Well I am not sure if it is 100% working as I get insomnia some nights and still can't settle as still have a mild rls but can cope for the time being. Will have to rethink if iron bisglycinate doesn't work anymore!

Thanks for your lovely wishes. X

[involuntarydancer in reply to Bkc1777]

Insomnia seems to be a secondary (but very troublesome) element to rls on top of the urge-to-move. This is what I use the cannabis for. What I really need to do is incorporate more significant exercise into my life as this is also a good sleep inducer for me. The trouble is when I'm tired the last thing I feel like doing is push-ups or jogging ...

I think I read somewhere that cortisol levels don't behave the same for us rlsers and tend to be low during the day but rise in the evenings - just when you don't want them to and this is what causes the insomnia.

I am sure you will have read this elsewhere but it is optimal with the urge-to-move symptoms not to look for total relief. There seems to be a more rapid ramping up of symptoms if you have 100% coverage. If you get relief MOST of the time but still experience some symptoms, they are allegedly more likely to remain static so it may be that you have got an optimal situation with your iron bisglycinate.

If you are burdened with lots of cash, you could look at the Relaxis pad which I find a blessing for those occasions when RLS makes an unwelcome breakthrough. It is tricky to get hold of but when I purchased mine, there was a European importer.

I would mention kratom, which I also find very useful for breakthrough symptoms, but that too is illegal in UK ...

[Bkc1777 in reply to involuntarydancer]

Thanks. That is a helpful post.

I will check out the pad. And will keep an eye on my sleepless nights

B. X

[datsoon1 in reply to Bkc1777]

probably not but what the heck

[Hidden in reply to involuntarydancer]

"Youth is truly wasted on the young."

Isn't that the truth!

[datsoon1 in reply to datsoon1]

my dear husband was so paranoid on cannabis that he took his own life after i was in a near fatal car crash,good god i wish he was here to help me now; if i had the money i would find a doctor to amputate my legs it gets that bad....