IGNORED

[johndesmond]

CAN YOU SUGGET ASITE THAT WONT GNORE MY MESSAGES

[Hidden]

If I haven't answered its because I don't know how to help or I haven't seen your post. Do you want to throw it out to me, see if I can help?

[Kaarina Administrator in reply to Hidden]

Here is the post: healthunlocked.com/rlsuk/po...

[Daragh]

JohnDesmond, this forum has over 11,000 users but tends to be busier in the evening and at night. If you haven’t had responses to questions yet, please can I recommend you provide people with enough time to respond, rather than suggest you’re being ignored?

[Hidden in reply to Daragh]

Thanks Kaarina.

Hi johndesmond, sorry but I don't take statins so can't offer any advice really other than it appears your Dr, not wanting/able to admit their own lack of knowledge, is taking a guess.

RLS is not caused by floating cholesterol, flying blood cells or diving brain cells. It is known by people on forums like these that the brain and more particularly the dopaminergic system and the brains ability to store iron.

The search function on the top right of the page is a valuable resource and may I suggest you look at Gentle Iron, Diet, Kratom and opioids.

Something that will definitely help your cholesterol as well as your RLS is a gluten and dairy free diet.

Hope that helps and you don't feel ignored.

Take care

raffs

[Hidden]

Thanks to Kaarina providing the post, I will now look at it and respond only if I feel I have something to contribute. I was busy going about my day and just got online a few minutes ago.

People will respond John, you just have to be patient.

[Madlegs1]

You were given excellent advice after your first post.

This is a site concerned with rls-- so we wouldn't know too much about statins.

And you will be far more effective if you don't shout.

Sorry for your troubles and hoping you find relief soon.

[LotteM]

To keep it short: pramipexole, like ropinirole, carbodopa/levedopa and Neupro can make the symptoms worse. Sooner or later, on a low dose, but much more likely on a high dose as you seem to take. Especially if you take it daily or frequently. This paradoxical worsening is called “augmentation”. Inform yourself about it, load yourself with (printed) information and talk to your doctor. Most likely you will have to come off the pramipexole, slowly, and NOT be put on another of the medicines mentioned (= dopamine agonists).

Also, look into iron. For people prone to RLS their body stores, measured by ferritin, should be normal to high (>100) instead of just ‘normal’. Lots of info on here and on rls-uk.org on iron and RLS as well. And on the Johns Hopkins site on RLS.

Good luck.

[Hidden]

I'm only responding because you were feeling ignored, I can't really offer any comment except to reinforce what's already been said. It sounds like you've had what seems a common experience , a doctor who's ignorant about RLS and ignorant about the best way to treat it.

If a drug isn't working then it's never a good idea to take more. In some cases this leads to addiction or overdose.

Being ignored is one of my "crumple buttons". The worse thing you can do is ignore me. Getting a bad response from people for me is better than getting no response at all.

I do find this site a bit confusing at times. One of the reasons for this is that members come from many different time zones, UK, right across the US, Europe and Australia.

The other is, sometimes, my posts seem to disappear. I could swear I posted something, but when I sign in again, it's not there. I've no idea why that is.

I don't respond to every post, otherwise I could possibly spend days doing it as I tend to go on a bit! So generally speaking just respond when I think I can offer a helpful comment. If I don't know anything than can help someone, I don't respond.

Sometimes, I'm overwhelmed by the distress people are expressing and simply don't know what to say.

I have noticed that some posts don't seem to get responses and it seems it usually because they aren't really to do with RLS.

There a few "stalwarts" on here, I've noticed that respond a lot and have apparently been on here years. They seem to know each other and sometimes it seems a bit of a clique, but they do try to help, so I never feel excluded.

I see you've now got quite a few responses which seem to offer some good tips.

It would be good for you, if you can, to find a doctor who listens and is willing to discuss things with you. This significantly helps, especially when they know little about RLS.

You need to get as much information as you can about RLS, the various treatments and their limitations, so when you go to discuss things with your doctor, you can inform them.

This site is one way of doing it, but I'd do your own research as well. Especially, look up "Dopamine agonists" and "Augmentation" . This is not a medical website and sometimes there are inaccuracies.

People are trying to help as well as they can

[FLAME43]

John your best bet is here, sometimes responses may be a bit slow, and we are so put out by the RLS symptoms it is not always easy to wait for what we hope will be a helping hand. If it is about statins i had to go off them

[HeLovesus]

I have never had real RLS- my problem was Arthritis related. So many people from using statins have been slapped down with RLS. It appears always to be connected, but I have never figured it out.

I am new here and did not see your post, so please do not feel ignored.