Why do I feel restless during the day?

[Boomerang83]

I would really appreciate some advice. I have just been diagnosed with PD and have recently started on Madopar medication. I am still on a very low dosage and the nurse told me that it will take a few more weeks to reach therapeutic levels. Prior to my diagnosis I was experiencing a lot of spasms, muscle tightening in my feet which made it impossible to get a good night's sleep. My legs would shake quite a bit in the mornings and I felt an urge to move them. The nurse told me that RLS is a symptom of Parkinson's. IN the last few days I have felt restless during the day, a kind of not being able to sit still feeling and it is quite irritating. Do you think this could be attributed to the Madopar or is it part of RLS. I would really appreciate any advice. Is there anything I can take to alleviate the problem? Thanking you all in advance.

[Hidden]

I'm sorry if you misunderstoid my previous comments. It may be worth repeating.

Your nurse has misinformed you about RLS being a part of PD, which is a shame.

In addition the symptoms you describe do not appear to be RLS.

Also, if any of your symptoms were due to RLS then the Madopar , which contains levodopa can relieve RLS symptoms within 15minutes.

The symptoms you describe could be a part of your PD and Madopar can cause restlessness.

You might find more help and support on another forum

see this link

healthunlocked.com/cure-par...

I do aporeciate is not easy coming to terms with a diagnosis of PD, perhaps this forum could help.

[Boomerang83 in reply to Hidden]

Thanks again for taking time to respond. I am somewhat confused because I distinctly read on the Parkinson’s uk website scholarly articles that clearly mentioned RLS as a symptom of PD. I must try and find the link and get back to you. I understand what you say about Madopar and restlessness. Will this side effect wear off the longer you are on the drug do you think?

[Hidden in reply to Boomerang83]

Aplogies, if I've confused you. Just to cotrect that, some people with PD do get RLS like symptoms.

Both conditions do exist separately though.

Some people may have both. It just depends.

If someone gets RLS like symptoms as a result of PD then strictly speaking, it sould be secondary RLS.

If you're diagnosed with RLS before being diagnosed with PD, then it could be primary RLS.

Primary RLS occurs at an earlier age than PD.

I guess.if you have RLS like symptoms due to PD then the Madopar may take a while to relieve those symptoms. I'm not certain.You'll just have to wait and see.

However, normally, for primary RLS, as I say , levodopa. can act on RLS symptoms within minutes..

The information you've given about your symptoms still doesn't sound like RLS.

To adapt a cliche, all that's restless is not RLS. If you started experiencing the restlessness after starting on levodopa then it's probably caused by that.

For it to be RLS your symptoms must match all the diagnostic criteria.

I still think, in any event, your primary issue is PD, and you may het more help in that forum.

[Hidden in reply to Boomerang83]

Hi Boomerang, so sorry to hear about your PD. Are you in the UK?In the area I am in in Scotland the nurse specialists who run the PD clinics are excellent & very knowledgeable and a friend of mine who has PD finds her local patient support group superb though with Covid that system may have changed though hopefully these things will restart soon.

I’m writing this mainly because PD support is often excellent and their knowledge related to PD & effects of medicines & symptoms is likely to be far greater than ours on here which mainly relates to primary RLS & the other secondary types.

I would urge you to discuss with your PD clinic or nurse specialist if you have one. Often they are easily available on the phone.

There may also be a PD section on health unlocked which might give more specific info.

I hope you get as much relief as possible.

As far as age of onset is concerned ( I’ve seen mentioned in a reply ) there is nothing set in stone about RLS or PD. I have 2 friends with PD. One developed it in her early 50’s, some even earlier I have read of including the wife of a high profile Scottish sportsman. My other friend developed PD age 68.

I started with my RLS symptoms in mid 40’s - and very occasionally before that. My sister’s began in late 60’s.

I wish you well

[Dunedinite]

I’ve been on one Madopar at night for several years and although it seemed to work not too bad, over the past couple of years I have had to take two at night. The RSL often starts about 7.30pm which is when I take the first one. My Dr said that he doesn’t like me taking two because Madopar works like that and you get used to it and keep needing to up the dose. I really don’t know the answer because my RSL seems to be getting worse and some nights I am still awake at 3-4am! I take Panadol and Codeine phosphate during the night to try to calm down and even take half a sleeping pill during the night. Some nights absolutely nothing works!! The minute I lie down in bed it goes mad and I twitch all over, arms and shoulders as well as my legs. I have been told it is NOT the start of Parkinson’s but that Parkinson’s medication does help which is why Madopar is prescribed. I think it runs in families because my brothers have it and my niece takes 3 Madopar every night. I really don’t have an answer and will be seeing my Dr again to see what else he can do for me. My body seems to have just got used to only having 3-5 hours sleep but I have some VERY long nights!!! I can sympathise totally with you and what you are going through. One more thing, my iron was very low and he gave me medication. This felt initially like a miracle drug and really helped my RSL. However, now that my iron level is up, I’m back to the same problem. I am still taking the pills though because when I stopped them it seemed even worse. My Dr said it is surprising how many people have RSL as it us very common! Sorry not to be of more help but I really don’t have a miracle cure.

[Boomerang83 in reply to Dunedinite]

Thanks for sharing. Much appreciated.

[Boomerang83 in reply to Dunedinite]

From what you describe I don’t think I have RLS. I am more restless generally but I can lie in bed at night for hours without any urge to move. My problem is trying to get in a comfortable position because my foot maybe playing up as it feels heavy and numb. Once I can get comfortable I am generally fine. I am thinking that maybe restlessness is due to Madopar which I have only been taking for three weeks. Also I decided to lower my dosage of mirtazapine from 30 mg to 15 mg about a week ago so maybe it could be a reaction to that. Any thoughts?

[Dunedinite in reply to Boomerang83]

No, it certainly doesn’t sound like RLS to me. I just can’t lie still at all and dread going to bed. I also don’t see how Madopar could be causing what you have because it is designed to help with the twitching and movement of legs, arms etc. Not sure why it has been prescribed. There is a lot of I formation on the Internet about Madopar, so it might be useful to have a look at the articles. Hope you improve soon.

[Hidden in reply to Dunedinite]

Oh dear!

Whoever prescribed you Madopar for RLS has, I'm afraid possibly caused you more harm than good. Madopar, which contains levodopa hasn't been prescribed for RLS for decades.

When it is rarely prescribed it is for intermittent use only, e.g. 2 - 3 times a monthj.

It is almost exclusively confined to treating PD.

Levodopa was replaced for RLS by another class of drugs, called dopamine agonists (DAs), also decades ago.

The reason for this is that the DAs are more specifically suitable for RLS and carry less risk of complications than levodopa.

The main major complication of levodopa is a condition known as "dopaminergic augmentation". In effect this means that the levodopa, instead of relieving your RLS symptoms, actually makes them worse.

You are suffering from dopaminergic augmentation.

I have very little doubt about this, the symptoms you describe are the classic signs of augmentation.

This means that really, Madopar is the worst possible thing you should be taking for your RLS.

Unfortunately, the drugs used to replace levodopa have also been found to cause the same augmentation and although the risk is less, it is still very high.

The good news is that your current symptoms can be improved signficantly. You do not have to put up with them.

However, although simple enough to do, it won't be easy and will take some time.

Simple in that the one most important thing you could do is to stop taking the Madopar.

You must not do this suddenly. You may need to wean off it slowly. Sadly, I can't advise on this, I have no experience or knowledge about weaning off levodopa. As I say it isn't used for RLS.

If you were on a DA I could suggest a weaning schedule for you. This is necessary because reducing a DA can lead to severe withdrawal effects and I imagine the same is true of Levodopa. Hopefully a doctor can advise you.

In addition, you will most likely need to start taking another replacement medication for your RLS. In which case I can offer some suggestions bearing in mind that this up to a prescribing doctor.

If a doctor were to offer you a DA, i.e. pramipexole, ropinirole or rotigotine as a replacement, I suggest you do not consent to this. These all cause augmentation and you will find that either your augmentation continues or returns fairly quickly.

More recently new medications have been recommended for RLS called alpha 2 delta ligands, i.e. either pregabalin or gabapentin. These are now recommended internationally as the first drug of choice for RLS as they carry a significantly less risk of augmentation.

See this link

pubmed.ncbi.nlm.nih.gov/274...

In addition there are two other things your doctor should discuss with you. -

1) Iron therapy : is a treatment for RLS and augmentation.

2) Eliminating (if possible) any factors making your RLS worse. (Aggravating factors). These are mainly other medications.

You may find this link helpful

uptodate.com/contents/treat...

I will send you by private message an excerpt from the UK official national guidance for GPs on the management of augmentation which is evidence based. You may find this helpful. The link is not accessible from NZ.

I hope your doctor is open to discussing this information with you.

If you have any questions let me know.

[Boomerang83 in reply to Hidden]

Thanks for your detailed reply. I think you misunderstand me. My neurologist prescribed madopar for me because he diagnosed me with PD, not RLS. I seem to have developed secondary RLS or something similar. I am hoping the Madopar will alleviate my symptoms of PD.

[Boomerang83 in reply to Boomerang83]

Sorry! I didn't realise you were replying to Dunedinite. thanks again