new to here, unfortunately not new to RLS

[helenhugs]

Hello peeps. I'm a 33 yr old mum of 4 living in the UK. I began suffering with RLS when my youngest daughter was born in 2004 and things have just gotten progressively worse. My doctors are pretty great now, but it hasn't always been that way.
I'm now on 3.5mg Ropinerole and have also been prescribed 10mg of baclofen to try to relax the muscles as I seem to constantly pull them, making things feel so much worse. I'm not having any respite, even during the day, from the RLS and am pretty much at breaking point.
Any hints, tips or anything else anyone can suggest would be greatfully received. I've also tried gabapentin, pergolide and amytryptiline in the past.
Thanks
Helen

[rthom]

Hello helen

Glad you found us here. I wonder if your Roprinole is having the opposite affect for you now. Have you read about the augmentation with these drugs? Sometimes they can cause symptoms like rls instead of helping alleviate them. If this happens folks here have had to either go off of it or take a drug holiday and switch off between taking one day of Roprinerole and the next or take something else--like an opioid. Have you looked at the list of meds used for WED on the rls site?
http://www.rlshelp.org/rlsrx.htm
There is a lot of great information there.

[Polar Bear]

Hi Helen, and welcome to the site, tho sorry that you have need of us.

I have symptoms 24/7 and can understand your discomfort and frustration.
When you say you are on 3.5 ropinerole, is this taken as one dose? It is rather high for just one dose.
I take 4mg but it is spread over the 24 hours and supplemented with tramadol.

Baclofen is not a drug that would be well known to help wed symptoms and perhaps you could let us know if you think it is making any difference.

Amitriptyline is an anti depressant which would be considered not the best to take when suffering from WED. A certain percentage of us would find that it would aggravate the symptoms.

If your doctors are considerate and wish to be helpful it might be a good idea to print off the document linked in my signature and use this as a basis for discussion with regards to medication. It will give a direction as to what to try when ropinerole, gabapentin etc. have not worked.

If your symptoms have gotten gradually worse despite upping your ropinerole then as rthom says, augmentation may be a consideration.
As mentioned before I take ropinerole and tramadol, and still get breakthrough. As it happens I also have codeine for another condition that the tramadol does not work for, and the codeine takes care of any breakthrough quite satisfactorily.

Would your doctor consider a trial with tramadol or codeine.
Be it together with the ropinerole or instead of is another consideration.
If you were to come off the ropinerole you'd likely need something much stronger to help you get off it.

[helenhugs]

Thank you to both of you for taking the time to reply.
I have to say I'm a bit new so although I've seen it mentioned I'm not fully understanding of augmetation. Any help would be appreciated.

The doctor I saw the other day admitted she isn't fully understanding of RLS and put me on the baclofen because I complained of pulling my muscles on a regular basis, she wants to see what happens in 2 weeks and if it has improved at all then. If no improvement then we'll try something new. She's not the neurologist at the surgery but I don't particularly like him lol so I didn't book with him.

My dose of ropinerole is in 1 single dose, at night, 30 mins before bed. Would it be right then thinking that maybe the dose spread throughout the day would be better? I asked about having a small dose in the morning to alleviate symptoms but the doctor said no, not the one I saw yesterday but a different one.
The baclofen was given to alleviate the symptoms of the pulled muscles and to see if the muscle relaxant would make any difference. I'm at the point where I'll try anything. I've spent far too many nights sobbing in frustration because I'm soooo tired and can't sleep due to the pain. I've taken 1200mg ibuprofen, 400mg paracetamol, tramadol and codine for far too many nights and it can't be good for me but I've been desperate.

[rthom]

Helen glad to be of any help to you so feel free to ask as much s you want.
When i read your initial note and saw the baclofen and especially the amytryptiline i immediately got queasy. My Dr. gave me those in the past and in both cases my rls was made much worse. That's just me but it's not uncommon for some types of medications to do that.

RLSF augmentation :
If augmentation occurs, your usual dose of a dopaminergic agent will relieve your symptoms so that you are able to sleep at night, but eventually, the unpleasant sensations will develop earlier in the day. Augmentation of RLS symptoms may occur after an initial period of relief with dopaminergic agents, and unfortunately, increasing your dosage will probably worsen your symptoms. If augmentation occurs, you and your doctor can work together to find a new drug regimen that will work for you.

Basically for most, the symptoms become worse because of the medication than it would be if you were not taking it. It may move to different areas of the body or just increase in severity.
Did your dr tell you why you should not use this medication in the morning or just instruct you not to. I've heard people talk about both taking it just at night and others take it 2 times a day. If he was worried about augmentation it would likely be better on one day and off the nest (with a different type of med on the off day). If it works for you maybe just splitting it into 2 doses would help you. Most have doses up to about 2mg ea. (higher is used for parkinsons). I would put roprinerole in the search and read through other's experiences with it to get a better idea what to expect.
Have a good day.

[helenhugs]

Thanks rthom. Its great having people to talk to who understand, not that I would wish this on anyone. It's awful.
My symptoms are a lot worse, I don't know if I can put it down to being the tablets or just a progression of the RLS. I spend time during the day in tears too now which I never used to. My arms and legs, particularly my arms though, hurt ALL the time, from pulling the muscles. Hence the baclofen.

Doctor didn't tell me why I shouldn't take it in the morning, just that I should only take it before bed. I was the one who suggested a small dose in the morning to try to ease the pulled muscles.

Thank you

[ViewsAskew]

When you say pulled muscles, how does it feel?

I only mention it because I have myofascial trigger points - they hurt like the devil and almost feel like pulled muscle, but aren't. It's a tiny knot in the muscle and they can imitate carpal tunnel, repetitive stress injuries, frozen shoulder, etc.

Probably not what is going on with you, but thought I'd share.

[Polar Bear]

Helen,
When you started on the ropinerole did you start at 3.5 dose. Or did you start slowly and titrate upwards gradually until you reached a dose that worked. This is how it should be done.

I also have symptoms 24/7 and take my ropinerole at 3am, 9am, 1pm, 5pm, 9pm.
At bedtime I take 1.5mg ropinerole, 100mg tramadol, and 20mg amitriptyline (for fibromyalgia) which greatly helps sleep. I am fortunate in that the amitriptyline does not appear to affect my wed. I also have zopiclone sleeping pill for backup if necessary. I will also say that I take the anti depressant citalopram which does not appear to have a negative affect on my WED although anti depressants are not generally recommended as being good for WED but sometimes needs must, and then medicate around any extra WED symptoms if necessary.

You say that you take your ropinerole 30 minutes before bed. It takes ropinerole 60 - 90 minutes to work and so you are going to bed well before the medication has kicked in. It is very very important that your medications are taken well before any anticipated symptoms. Once the symptoms have started the medication finds it difficult to work properly.

How does your doctor expect you to cope during the day with unmedicated symptoms. Please read the RLS Medical Bulletin in my link and take a copy to her. If a dose of ropinerole lasts 8 hours (and I think it is more like 4 hours) then I reckon the time span of your symptoms need to be examined and medicated accordingly.

Ibuprofen and paracaetamol are not known to be effective for WED symptoms.

Also have you had a ferritin blood level done. This is a specific blood test and is not done routinely. Docs may say that 20 is normal but us WED sufferers need to be up near 100, preferably over. This test indicates the storage of iron in the brain and is very important. The higher the ferritin level the less likelihood of augmentation.

[ViewsAskew]

Polar Bear, you are so thorough. Thank you.

[badnights]

helen, I can't add much to what Polar Bear has said. You are in a terrible spot and it's clear to us (who have been throught the same thing) that you are not being treated properly, not through maliciousness or neglect but simple ignorance on the part of your doctors. Sadly, that's very common.

Many of us have taken information about WED/RLS in to our doctors, often with positive results. I think the information is generally received well if it is presented respectfully, saying perhaps "I came across this information and I wonder what your opinion of it is? It seems to be from a reputable source" or something with that tone. The medical bulletin in PB's signature is the best summary document you can give a physician. There is also an awesome little book for physicians who have to treat RLS (that is also very informative for patients) by Hening, Buchfuhrer and Lee, 2005, called Clinical Management of Restless Legs Syndrome. I actually gave a copy of that to one of my doctors (who has since left town , and I hope is diagnosing and treating WED somewhere else now).

[helenhugs]

Thanks everyone.
The pulled muscles, ummm I don't know how to describe it other than pulled, it hurts every time I move them, in fact, it hurts even when I don't I was examined by the doctor who agreed they were all pulled too. Its a constant ache that when I move them intensifies. Often with my WED I twist my arms as I move them, it's not a conscious decision, I only notice when I'm paying attention.

I started on the ropinerole, have worked my way up gradually to the 3.5mg dose I am now on. Don't worry, it certainly wasn't straight in at that dose,. Polar bear, can I ask what dose you are on at those times? I don't suppose having the symptoms all day every day makes much difference to when the symptoms usually get worse It used to only be in the evening but like I say, it's all day now.
I assume therefore I haven't had a ferritin blood test so I'll see about mentioning that one to the gp aswell then.
I'll print out the info recommended and suggest it, I can be tactful when necessary lol but the fact they have admitted to not really knowing much about it will help them realise I am lacking in understanding as much as they are. I've taken info in before to show them, just not relating to WED.

Thank you for help and helping me to realise I'm not alone in this anymore.

[ViewsAskew]

Do look at myofascial trigger points. They are not well known by doctors. How you describe it is how I feel. When I first went to a doctor about it, he said I had pulled muscles and gave me a muscle relaxer, that's why I asked.

It may not be what you have....but it is a possibility. For me, it's caused chronic pain in my shoulder, back, neck, hip and thigh for many years.

http://saveyourself.ca/tutorials/trigger-points.php

http://maija-haavisto.suite101.com/myof ... ts-a142706

http://www.triggerpointtherapist.com/

http://musclespasmchainreaction.com/Book.html

[Polar Bear]

Helenhugs: my basic medication regime is as follows:
3am .5 mgropinerole
9am .5 mg ropinerole
1pm 1 mg ropinerole and 50mg tramadol
5pm 1.25 mg ropinerole and 100mg tramadol
9pm 1.5 ropinerole and 100mg tramadol

Sometimes if I sleep a bit later in the morning or if I am very mobile then my meds may start later. If I can wait until perhaps 12 noon before taking meds then the regime runs later and I can sometimes stretch it a little and so take about 1mg ropinerole less in the 24 hours.
Any breakthrough is quite well handled with codeine 30/500 which I have for another condition. However the doc could stop the codeine at any time.

[rlsjanet]

Do pursue your iron levels. One of doctors told me that my levels might be considered normal in the medical world but not normal for WED/RLS. Iron supplements seem to help alot.

[Angierob]

Hi Helen, I read your post and my heart goes out to you. I'm in the UK as well. I too have sat on the edge of the bed weeping because I'm so tired and just want to sleep. I tell my body frequently how much I hate it! I also suffer from PLMD (periodic limb movement disorder), which is the main thing keeping me awake at night. I too am on 3.5mg of Ropinrole and have posted separately on here about my body seeming to become immune to it and needing to take more and more. The lovely and helpful people on here have told me that it may well be due to "augmentation", a new term to me as well, and also suggested that I get my ferritin levels checked, which I will do. None of the GPs in my surgery seem to know anything about RLS/WED and I will also take the RLS document with me when I go. I have been very much comforted by the info on this forum and to know that people here are so willing to help us all out. I have been concerned about what happens when you reach the max dose of Ropinirole (4mg) and have discovered, thanks to this forum, that you can take other drugs at the same time as Ropinirole. If it helps, my experience with RLS is that sugar, salt and alcohol will aggravate it terribly - ie, all the things I love! So I try not to have any after 7pm and fnd that makes a big difference. Lots of luck to you, I hope you find this forum helpful.
Angie