RLS GRIEF

[Griefpepsi13]

I think too little is known about RLS Syndrone. Even my doctor couldn’t help me apart from telling me to change the tablets. He did advised me to see a Neurologist and I have to wait three months minimum to see him.

[pilateskid]

Can you afford to go private? I eventually went privately, it was worth every penny. Make sure your neurologist deals with Parkinson's, as meds used are similar to meds for RLS. My neurologist was brilliant, had a good knowledge of RLS.

[Hidden]

Yes it's not good. There is quite a lot known about RLS, but there doesn't seem to be many doctors that know it!

I'm afraid this includes neurologists, quite a few of them also don't seem to be knowledgeable. I hope you get a good one.

However, just in case, I hope you aren't disappointed if a neurologist just tells you to change the tablets, because that's probably all they will do.

I've discovered that it really pays to find out as much as you can about this disease for yourself and there are other things you can do which I've found on this site.

For example, it may be that you would benefit from various supplements that you may have some deficiency in, especially iron. Or there may be factors in your diet or other medications you're taking that are aggravating your RLS.

I don't think a neurologist will be much help with thise things.

I hope yours is, but in the meantime, I suggest you read more posts on here and some of the pinned posts.

[Hidden]

Hi what tablets are you taking and the dose and what tablet did your doctor tell you to change to? I agree with Manvera, find out all you can about RLS, and about the meds available,. The more you know as the patient will help when you do see the neuro, look at what meds can make RLS worse, as some doctors AND neuro's do not know what they are.

[Griefpepsi13 in reply to Hidden]

Iam on roprinarol evening and night the full dose which does work but during the day I still get bad RLS I take magnesium not sure if helps I am going to try and come off citraprame a doctor told me that they can cause RLS

Hope this information helps you

Brian RLS grief

[Hidden in reply to Griefpepsi13]

You might be augmenting on the Ropinerole as you are on the full dose, also the citrapram not helping , weaning down off the citrapram could help reduce your RLS symptoms. If you need to take a anti-depressant, then see your doctor about trying a different one thats more RLS friendly, either Wellbutrin (not available in the UK ) Trazadone or Remeron.

[Griefpepsi13 in reply to Hidden]

Thanks I hope coming off citrapram helps . If I still need anti depressants I will find something that doesn’t make RLS worse

[RoadRunner44 in reply to Griefpepsi13]

Hi, Just read your post and you mention your doctor said Citaprame causes RL. Do you mean Citalopram? This is a anti-anti-depressant tablet that I am taking and reducing to one every other day to come off it. Could you confirm if the medication you refer to is Citalopram or Citaprame. As I suffer with possible restless legs this information is useful for me to know. Thanks.

[Hidden in reply to RoadRunner44]

Hi Roadrunner i should have asked aswell, i just assumed they meant Citalopram.

[RoadRunner44 in reply to Hidden]

Yes, I take 10 mg every other day of citalopram and hope to be off it in a couple of weeks. So is citalopram a n antidepressant that makes restless legs worse?

[Hidden in reply to RoadRunner44]

Yes it is. Look on this website and at the treatment page and scroll down til you see a list of meds to avoid that can make RLS worse, you will see a list of anti-depressants that can make RLS worse. rlshelp.org

[Griefpepsi13 in reply to RoadRunner44]

Yes it can iam coming off as soon as I can

[Griefpepsi13 in reply to Hidden]

Yes

[Griefpepsi13 in reply to RoadRunner44]

Sorry yes it’s citalopram I’m on. Also my GP tested me for iron levels . I had a count of 49 which is normal but not if you have RLS. Your count should be 100. He recently wrote me

A letter saying he had looked into RLS. So now he has put me on to 2 tablets a day as from today. I have to go back in six weeks for another blood test so fingers crossed.

[Griefpepsi13 in reply to RoadRunner44]

Yes I spelt it wrong

[involuntarydancer]

You will learn loads by reading the replies on this site and other rls forums. It is also worth looking at the rlshelp.org and rls.org. It is definitely worth informing yourself because many health professionals, including neurologists, will actually prescribe medications that worsen rls - either immediately (eg amitryptiline) or in the long run (dopamine agonists) through disinterest or ignorance.

[RoadRunner44 in reply to involuntarydancer]

That's such useful advice but might prove difficult when you appear a bit of a know all to your doctor. I'll have to be careful how I approach the matter with him. I agree that we are helping ourselves by acquiring as much knowledge about our medication as we can. My GP seems to flounder when I bring up difficult question. He obviously doesnt know the answers and keeps on referring to his phone information. He doesn't inspire confidence though. In fact it really does appear that the members on this forum are much more informed.

Just noticed you mention amitriptyline, well that's what he's put me on! I'll say no more!

[involuntarydancer in reply to RoadRunner44]

Amitryptiline?

That says it all.

Best approach I found with doctors is to print the most erudite studies from reputable publishers such as science direct. Then highlight the most relevant sections (not too much so that it is easy for them to digest quickly) and bring them to the appointment. It is also useful to order the medical textbook Clinical Management of Restless Legs Syndrome by Drs Lee, Buchfuhrer, Allen and Henning (some of the leading rls experts) from Amazon. It is slightly out dated now but still worth having. At a minimum it will spell out that amitryptiline exacerbates rls.

Good luck.

[RoadRunner44 in reply to involuntarydancer]

Thank you for your advice, it's sound advice too! I'll have a look on line if I can get a copy of the book you recommend. It sounds very useful.

[Shumbah]

We should not need to see neurologists .

The drug are the drugs it’s like having epilepsy we have to try them to find what works for us !

The trouble is they want to try to the drugs with the worst side effects first it seems !

It’s really up to us to do the research

Most neurologist can do more harm than good especially if you don’t want to take medication prescribed

Neurologist are not specialist in RSL unless they choose to take an interest in it they do not have a clue .

They tried to force me to see a neurologist and they prescribe dinosaur drugs , very uneducated in RSL

That is why I travelled to the USA for medication, started the medication whilst I was there with instant results .

Brought the meds home to Australia and doctors letter and the results what could they say but comply