Meds : I do not get prescribed any... - Restless Legs Syn...

Restless Legs Syndrome

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Meds

Tonp profile image
Tonp

I do not get prescribed any medication for my RLS,

Am wondering if medication seems to help. If so what and how does it help. Any information I get I can tell my Gp about. He told me that he medicine normally given for RLS is also prescribed for Parkinson's disease, which scared me a bit. But this problem in my legs and arms is driving me insane.

Any help or suggestions would be really appreciated

Thanks

21 Replies

Hi are you on any medications for anything else as many cancause /worsen RLS? Do you have a family history of RLS? .Haveyou had your Ferrartin iron levels tested? X

Firstly blood test should be taking to rule out the obvious then they will use medicine that is also associated with Parkinson’s because most are dopamine antagonist which often control RLS be persistent find a doctor who you can review regularly with.

Good luck.

+As the above have said.

Also - if you are new to this site- then it would be worth while spending some time reading back through the last few months correspondence to get a feel for the various problems, concerns and possible solutions to your situation- which is a very common one.

Not knowing what to do and being afraid of the side effects of Parkie meds. I kept away for 3 years of misery because no one told me that the dosages were completely different. And my daughter is a Pharmacist !!! Go figure!!😠

Another site to follow is

rlshelp.org

Which has a very informative ' patients letters' section. Also a comprehensive list of meds available- with pros and cons.

There are solutions to rls- but we are all so individualistic and live different lifestyles , that it is a minefield to navigate successfully. And things have a way of changing constantly - just when you think things are going great - that's when you get sucker punched.

We've all been there, tried that , bought and worn out the T shirt- and we are all still here to put in our tuppence worth.

You will get through this and find peace.

Cheers.

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Hidden

Yes, meds. do help. And yes, your GP is right about the drugs. The first line of treatment for RLS is to be prescribed a dopamine agonist, which is a group of drugs also prescribed for Parkinson's. BUT...The doses are different (the max. dose is lower). For example, the max. dose of the Neupro patch is 3mg for those with RLS; any higher and it is considered a Parkinson's dose.

I get the impression you are new to RLS; am I right? Are you worried about developing Parkinson's? If so, I'll come back and say more.

Take care,

A lot of people have found it to be food related. I've found relief by reducing my sugar intake to a minimum. I had felt very relaxed yesterday till I got home late and had a portion of apple crumble. That tipped things over the edge and half an hour later I had rls which thankfully receded a couple of hours later.

I am on the meds given for Parkinsons, Pramipexole. It's given in small doses and has worked for me, I take it around 7pm and it certainly has made a huge difference. I'm on quite a lot of meds for other health conditions and it hasn't affected them but it's always best to discuss this with your GP

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Hidden in reply to goodtochat

What is your dose of Pramipexole..? The recommended dose is to take no more than two pills of the lowest dose, thats what the RLS experts now say, because of augmentation.

goodtochat profile image
goodtochat in reply to Hidden

I take 0.088 x 2 at night time. Please can you explain augmentation?

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Hidden in reply to goodtochat

Hi!

Here's augmentation explained:

verywell.com/what-is-augmen...

goodtochat profile image
goodtochat in reply to Hidden

Thank you..... a very interesting read. I have an underactive thyroid which is controlled by thyroxine but also suffer from coeliac which apparently causes the body not to absorb as it should. All I know is that for 5 years I haven't slept well because of the RLS and now on the Pramipexole I generally have no problem. But, I wouldn't like to think I am causing issues for myself later.....Feeling confused!

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Hidden in reply to goodtochat

I'm sorry. You have a right to know as much as possible, but at the same time, the more you know the more you worry (or, at least, that's what happens to me). Just because you are on a med. that tied to augmentation, it doesn't mean you will get it. Are you worried you might augment? Well, you might. But you might not. And the "might not" is what you have to hold onto. Again, you have a right to know, but please don't let it "eat away" at you. (I'm writing this thinking "man, look who is talking here -- the letting-worries-eat-away-at-you queen!) My therapist is helping me with this exact thing. You know what she says? She says, "that's in the future. You can't worry about the future". Point being: you can deal with it when (and if) it ever gets here.

What are you confused about? Wait...don't tell me. All of it, right? Man, I hear you there! I have so many drugs in my system that I don't know what causes what anymore (I take drugs for depression and hypothyroidism as well). I am currently working with my psychiatrist to rid my body of the antidepressants so that we can get a clearer picture as to what's happening.

goodtochat profile image
goodtochat in reply to Hidden

Sorry to hear of your troubles. We rely too much on medication and I sometimes wonder what it would be like to rid the system of them. It would be nice but I think it's a pipe dream :( Good luck with everything

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Hidden in reply to goodtochat

Thanks! I'm taking it one day at a time (or, trying to, anyway :) )

Yeah, totally getting rid of the antidepressants might be too much for me too handle, but it's worth a try. I'm just glad my psychiatrist is going along with this! If I were still in the US with my pill-happy psychiatrist it'd be a different story (I'm from the USA, but have lived in Norway for the past 5 years)

Good luck and take care,

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Hidden in reply to goodtochat

Hi, what you are taking the 0.088mgs x 2 is the right dose to take and no higher than that, that dose is now what is recommended to take. If it stops working at that dosage then your doctor will probably want to increase it, which would be the wrong thing to do because if augmentation. Which Jess has directed you to so you can read about it.

I've had RLS for many years. I am currently 64. Not trying to be a downer for you but currently there is no cure for RLS. And it will get worse as you age. My GP was correct about that fact when I first went to him hoping for a cure. Medical doctors are trained to give the medicine that seems to relieve symptoms for whatever condition you have. But for RLS sufferers the medications that are in the medical toolbox all seem to work great for awhile but as time passes the drugs lose their efficacy and you have to increase your dosage until you reach maximum dosage for that drug. Then your doctor has to find another drug that is in his toolbox and the process is repeated. A lot of the drugs come with side effects such as weight gain and compulsive behaviors. And the dopamine agonist drugs will eventually augment your RLS (make it worse). Then when you try to wean off that dopamine drug you live through many nights of hell on earth.

I admire you for reaching out and for hesitating your start of medication taking. My advice to you is to find as many natural ways of managing your disease as you can before you start drugs from the medical field. I have to go now but I have some other advice too. You are a hero! And there is hope!

Eryl profile image
Eryl in reply to Lolly53

I would suggest that RLS is the body's response to certain food, so there is a cure for many if not most people. i.e. stop consuming the foods that cause it. It's like headaches. Some people look for a better tablet and some people stop doing what's causing the headache. I, and others, find cutting down on sugar intake stops RLS. Personally I've thought an artificial preservative triggered it but I haven't tested that theory since I found that high levels o sugar can trigger it. Of course bodies are different, and some people might find other foods that cause their RLS.

Hi Tonp,

I know exactly what you are feeling, my mother had Parkinson's disease and also suffered from RLS. which is rather scary since I have had RLS issues. I pray it isn't a precursor to Parkinson's. Through my research and findings I ran across an article written by Drs. doing research on RLS. They stated they had found 65mg of iron had been useful in helping with the symptoms. I started taking 65 mg of ferrous iron supplement and have noticed a remarkable improvement. The article stated that even if you have blood tests that show your iron levels are normal, the problem is that your system isn't absorbing the iron properly. It's worth a try, it made sense to me. My family has a history of anemia, and I would bet this played a role in it. Good luck, I hope this helps.

PS.....Those drugs for Parkinson's disease are terrible on a persons brain cells. They break them down and that's why most people who have Parkinson's are also eventually diagnosed with dementia, my advise is, stay way from them!

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Hidden in reply to Vrnzjwl

Did you read that some where. ? I have never known any one taking the Parkinson's meds for RLS to eventually develop dementia. If you suffer with RLS, you wont develop PD because of having RLS. People with PD are known to develop RLS. Also did you have you ferritin level tested which is how our iron is stored. No one should take any iron supplements until you find out what your ferritin level tested to find out your number. For RLSers, the number should be 100+ below that number then taking iron pills can help some people, not all. Too much iron can be dangerous.

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Having RLS does not mean you will develop Parkinson's. The meds. prescribed just happen to be the same ones used to treat Parkinson's. This "sharing of meds." happens for syndromes that don't have their own meds. As far as I know, the only med. specified to treat RLS alone is Horizant, which is only available in the US.

If the original poster is worried about Parkinson's, please talk to your doctor. I admit I was worried about Parkinson's at one point, but that was because I was augmenting and didn't know it -- I didn't know what "augmentation" was, and so I attached a familiar word to try and make sense out of what was happening. At my request, my neurologist performed another neurological exam to assuage me of my fears that I was not developing Parkinson's.

I'm far from being an expert, but had the RLS for years before I was actually prescribed something useful by a GP that's also a fellow sufferer ...

RLS is neurological condition, like Parkinson's, there's a lot of conjecture around its causes, some say the Iron ferritin levels, same say Magnesium, I know my mag levels are Ok because a recent blood test, but am going to ask about the Iron, it this has to be high for us the have RLS, not just normal ...

As a medication, I'm on Ropinirole, and I know there is a lot of discussion about Ropinirole and augmentation, but that's only in the high dosage patients, I'm on 0.5mg/day

Have a look on here, there are lots of other meds, codeine used to work for me too, before it became only available for the purposes it is designed... i.e. Pain Relief ...

Good luck ...

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