I've just read Madlegs post and looked at the opioid report. Thanks for posting that. It's really interesting. I've just tried 25 Fentanyl patches and oxycodone with no effect at all. I was devastated and so disappointed. Also with the oxycodone I was getting awful anxiety and sweats. Not nice. Even on 30 mg it was no good. in fact my RL were worse than ever before and all day and all night. I can't understand it.
In desperation and at the end of my road (nearly in front of a truck!) I am now on rotigotine- Neupro patch. I am in bliss with no RL at all since I put the first patch on two days ago, and was able to sleep for more than an hour for the first time since January.
Obviously I am aware of the high risk of augmentation on this but 1: I will be alive to experience it, and 2: I am going to work on other things now that I have more control and sleep and hopefully be able to either reduce or withdraw from it eventually. I'm also going to withdraw Tramadol and Gabapentin and see how I am. (very slowly! I didn't know Tramadol withdrawal gives head -shocks if you drop too fast!)
My plan of attack is to continue on the FODMAP exclusion diet and work out if I have sensitivities to any FODMAPs .
I'm also doing a course via a book and CD of meditation: Mindfulness for Health : A practical guide to relieving pain, reducing stress and restoring wellbeing. The book addresses the concept of secondary pain and that if we can reduce our secondary pain by meditation then our overall concept of the pain we feel will be reduced. AS well as which it actually changes the brain and how it perceives the pain. 'Clinical trials show that mindfulness meditation can be as effective as prescription painkillers and also enhances the body's natural healing systems. Mindfulness can also reduce the anxiety, depression, irritability, exhaustion and insomnia that can arise from chronic pain and illness.'
I actually tried something when I had an albeit mild attack of RL and instead of 'running away from it' I looked into it and strangely, instead of legs jumping and becoming unbearable, I just looked until the wave passed. I do think that there may be something to learn here so I'm going to persevere.
So, that's where I'm up to. I'm alive and I'm kicking! I feel as if I have to attack this positively and on several fronts so that's where I'm headed. MY GP is fully behind me and was wonderful when I saw him on Tuesday when I was so desperate and totally off the planet. I don't think he's seen anyone with severe RL in his surgery. I was up and down and kicking and jiggling! I just couldn't help it. Perhaps it was good for him. Anyway, I feel as if I have a partner in my battle now and will feed him all the literature I can and he's going to do some research too.
Also... a word of warning. I was following advice from lots of sources to take iron on an empty stomach and have badly inflamed my digestive tract. I'm in a lot of pain and can't eat properly, have diarrhea , feel sick all the time and can't go to work until I'm more comfortable. I'm not taking any iron until it settles. I have bought 'Gentle Iron' but it hasn't arrived yet and when I do take it, it will be with a little food!
I'm feeling a little relieved today otherwise I wouldn't be posting and it's so good to not feel so bad. The other blessing was that at least I could lay in bed and feel rotten. i hate to imagine having RL and feeling as I did! I know I couldn't have borne that.
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I cannot believe it. I slept last night with a few wakings, from 9.30 pm until 6 am!!!!!!!! It did worry me that I had a few RL sensations at 9 though and had a bit of wriggle time. I did remember that I hadn't taken the dose of gabapentin so took that and seemed to settle. It's amazing the fear that comes with such a situation. And the thoughts about, 'what if this doesn't work' and 'OMG I can't do this if my legs come back.'
I'm finding the book on meditation addresses this issue and its effect on pain. Actually I'm quite impressed. I tried the focusing on the sensation again and it does enable one to watch it until the wave passes... but requires a lot of concentration and for a full blown RL attack wouldn't be doable.
I've also been thinking about how distracting when there is a RL attack can enable one to either ignore the sensations or stops them??? Has this been studied? It's a very interesting aspect. Of course, I have found that a strong attack doesn't enable one to do this. To me this suggests that the brain can really help in enabling us to live with this disease.
Hi, I fully recommend mindfulness as a set of techniques for dealing with life generally.
I only find it absolutely impossible to do a normal mindfulness meditation whilst suffering total body twitching. Nontheless, mindfully focussing on the sensations can help. Not by stopping them but by altering your experience of them. Practising mindfulness meditation when you're NOT having an attack will strengthen your "mindfulness muscles" to help you cope with when you are.
If you wish to take that further, a course in Mindfulness CBT (Cognitive Behaviour Therapy) might help.
To avoid any misunderstandings, a) this does NOT mean I'm saying thst RLS is all in your mind and b) It will NOT treat your RLS or relieve its symptoms so don't expect it to.
What it does do is change the way you think and feel about your symptoms, At the moment, when you have an attack, your thoughts are probably saying, this is bad, this feels terrible, how am I going to get through tomorrow etc
I love your reply. Yes I do believe it will change how I perceive my pain but not make it go away. I don't know how to make a link but I've pasted the address here of the documentary on Catalyst, an ABC program in Australia. The research is compelling and very interesting:
The Mindfulness Experiment
DOCUMENTARY
Catalyst brings together 15 ordinary Australians to take part in a revealing scientific experiment - to see if practicing mindfulness can help treat conditions like chronic pain, anxiety and stress that affect millions of us.
I haven't studied the FODMAP diet in great depth, but I get the impression that it reduces high glycemic index foods. I've been avoiding all sources of added sugar, i.e. sugary drinks, cakes, biscuits, chutneys and sauces, and avoiding processed food with refined carbs for just over a year, and have found it to be very effective in eliminating my rls.
Shortly after finding that my method worked for me, I heard of The Wahls Protocol which is intended to heal neuro degenerative diseases (mainly M.S.). The philosophy an science behind it makes a lot of sense to me, so I am now following the principles of that diet.
'The low FODMAP diet, developed by researchers at Monash University, eliminates foods that can be malabsorbed by some people.
FODMAPs stands for a group of carbohydrates Fermentable Oligo-saccharides, Disaccharides, Mono-saccharides and Polyols that can be poorly absorbed in the small intestine.
This malabsorbtion can cause symptoms of Irritable Bowel Syndrome (IBS) such as abdominal bloating, excess wind, abdominal pain, and changes in bowel habits. Many people with Inflammatory Bowel Disease (IBD) have adopted the diet and have found it to be helpful, although it does not affect inflammation in the digestive tract, it can reduce these symptoms. crohnsandcolitis.com.au
There seems to be such a big area of study that's only just beginning to be discovered about the health of the gut and how it affects conditions of the body.
I have to say that even though I've had IBS years ago, I didn't ever think it was related to particular foods I think it was due to stress at the time. However, a lot of the foods that are on the FODMAP list are ones that I know have a deleterious effect on my digestive system even now, so maybe there's something that I might be able to learn.
Graham 3186 (I think) is also following an adaption of the FODMAP diet with great success. If it works for one it may work for another- or not. it's still worth trying. I have noted since reading about FODMAPS that on some recent nights that my legs were at their absolute worst, I had eaten 5 high FODMAP foods for tea! and that backed up what I'd suspected when I'd eaten some of these foods before but had no basis to understand if they could be a problem.
Yes, knowledge of the workings and interactions of the gut have developed greatly over the past few years. An entertaining as well as informative introduction into the subject is a book by Guilia Enders called simply 'Gut'.
Thank you Eryl. Your advice has helped me tremendously when you posted this info a few months ago. Healing the gut with anti inflammatory diet has been key for me as well
Yes I think inflammatories are the main cause, and although raised blood sugar for me has been the most noticeable cause, I'm still noticing mild symptoms occasionally, so I'm suspecting nightshades or gluten sensitivity now.
I seriously tried to learn how to meditate around 10 years ago with a great Chinese master. Attended a full 10 day retreat for that whole purpose. Also the hall full of people meditating should be a very powerful help because all your mirror neurons should be firing in accordance. Well, it was a good plan, but I wouldn't recommend it. Unfortunately it didn't work for me. I simply couldn't concentrate even for 5 minutes. Sitting there for hours without any opportunity to get up and stretch worsen my RLS tremendously. Also I tried mindfulness meditation at home, a lot. After initial positive experience (may be because it floods your brain with dopamine while having completely new experience) it stopped working for me. The best solution I got so far is guided meditations. There are a lot of those around, available from torrent trackers if you want to try them for free. In this particular case sharing is really caring. Also I can't emphasize enough how grateful I am to the person who recommended a vibration plate for RLS. I found it used for 80 euros but the model without handles, only the platform itself. So now it conveniently sits under my table and I can use it without leaving my chair and have a relief while working. Also I can easily take it out and use while standing on it. And it is a great help at night because the relief is easy and immediate.
I've attended a meditation group for years and often have stood or walked the whole time. It's a guided meditation so really good to not have to listen to silence and be still. At times though I would have tears coursing down my face and anger in my heart!!!
This book has a CD with 10 minute guided meditations. Can be done standing and I have done it with some success standing. 10 minutes is doable whereas 30 -60 minutes isn't. See the link I put with my reply to Manerva!
While I'm on the Neupro patch, I'm going to dig in a meditate twice a day for 8 weeks of the program and see where I go. Even if it's just about changing the way I see the 'secondary suffering' then I'm happy.
Just to clarify, "mindfulness meditation" is a different type of meditation from other forms, e.g. those of eastern origins. It isn't just about focussing awareness, it is also about an attitude towards yourself. Meditation, is only one part of mindfulness CBT. There are other techniques than sitting still, which, as you know, with RLS is sometimes impossible.
Mindfulness CBT has been researched and found to be effective. In the UK, the NHS accepts mindfulness as an effective therapy for people suffering moderate anxiety or depression or chronic pain.
Additionally, mindfulness has no religious connotations or sets of beliefs.
Yes, I'm glad that it isn't religious. Science and evidence based meditation practice is what I want to do. If I want religion, I'll find it elsewhere.
I did a practice just now with a mild RL attack and it was bearable standing up and focusing on the waves (and involuntary twitches) of pain. Interesting. It became something different but I can't explain it yet. I will have to do more to establish the difference.
Unfortunately I doubt I can afford CBT. It would be unlikely to get it through the public health system here... not without a long, long wait. and I can't afford a private therapist.
Here's a link to one limited study into 'Mindfulness-Based Stress Reduction for Restless Legs Syndrome: a Proof of Concept Trial'. It's worth reading and sounds as if it may hold some hope for some sufferers. I know not to take single studies too seriously and await more extensive studies however, I think this sounds as if it's well worth trying.
Mine is more expensive even used because it is without handles. People try to get rid of the big ones with handles, they take a lot of space in a room, the prices on ebay start from 20 euros or so.
Even being on a plane, the vibration can set off my legs. I don't know if I would be able to use it. Maybe I'll have to find someone with one and try it out. I'll look at clinical trials if I can find some. Thanks for the info.
So pleased you are feeling so positive now. I think most of us on here have felt at our lowest like you did, but we all have to see the light at the end. Life is so precious . Good luck
I felt so bad and my legs were awful. I couldn't stay in a hot bath and nothing would soothe them so I leapt out... as easily as a 61 year old with arthritis can leap, and decided to walk down to the chemist and buy some Deep Heat. While walking, painfully and slowly, bearing in mind I hadn't slept for about 36 hours and contemplating the heavy vehicles coming towards me, I decided I had to beat this! I planned the things I would do including facing my phobia of public swimming pools if necessary to help this hellish disease. Once I came back it was as if I had turned a corner! My legs were the same, but my mind had changed. I was very grateful.
What dosage is your Neupro patch? The recommended maximum is 3 mg.
Good luck with the gentle iron. It should definitely be easier on your digestive system. Have you had your blood ferritin level checked, and if so, what number is it?
I also meditate, and find it helpful. I have also found that sitting on a cushion on the floor with legs gently folded really reduces my RLS twitches compared to sitting in a chair. Not sure why...
The patch is 2 mg. I have some breakthrough legs but I'm not going higher. What I need to know is how to reduce the likelihood of augmentation? I did wonder last night if I had mild sensation of restless arms??? I do hope not. However, again, I don't think I'll go higher. Any comment?
My ferritin level was 75 but that was around January and I've eaten a whole box of nails since so maybe it's up a bit. Given my GPs supportive attitude I'm inclined to ask him for an iron infusion even if I have to pay the whole amount myself. I'll take all the literature for him to read.
Whilst meditating today, my big toe had a nasty cramp and instead of flexing it and wriggling it, I was able to look at it and feel it . Not especially nice but I was able to feel it without fear and letting it happen. It certainly it shows how this really can be a useful thing though it is very hard work. I guess with practice it will get easier.
I have lower back pain and knee pain due to degeneration of arthritis so sitting on the floor is not doable. However, I'm happy on the bed or standing if legs are too silly. It's a 10 minute one so not too taxing. There are also exercises to do daily. I'm really excited by it actually.
Still having gut pain which was awful today so no iron until it clears up. Then it will be with food.
It seems you're doing all the right things. There's no way to completely avoid augmentation other than eliminating the patch (and all other DAs). But you can reduce the likelihood of augmentation by refusing to increase the dose, or by reducing it to 1 mg.
I didn't even know there was a 1 mg when it was prescribed this week. I wasn't really in any state to question if the doctor had given me Grahams live spiders to eat as a cure! I just needed it all to stop and be able to sit down or sleep. Now I am calm and rational, I will talk to my GP on Tuesday and see what he says. Given that I am having some episodes- standing last night for and hour, I don't know whether to suggest staying on 2 mg until I have withdrawn from the gabapentin and tramadol, then when things are settled (???) reduce it and see how that goes????
You are changing too much at once. You're reducing or eliminating three medications all at the same time. That sounds like a recipe for a return of severe RLS. And by changing all three at once, you won't know which one(s) is/are causing the problem.
Why are you eliminating gabapentin and Tramadol?
You might try keeping all three meds where they are for awhile (including the 2 mg Neupro). See if you can get to a stable state with reasonable RLS control before making any changes. Then maybe change one thing at a time and see what happens.
In particular, if you're going to reduce the Neupro, you'll likely need some support to get through that. Many of us use opioids during that reduction/withdrawal. But I see that some of those have not helped you. However, does the Tramadol help at all?
Dr B suggested that the 2.600 mg dose of gabapentin was not useful and that doses over 600 weren't absorbed. Hence the reduction. I'm now on 1,500 mg.
Tramadol can cause augmentation in some people so my neurologist suggested removing it. (It was his only suggestion when I emailed him in total despair and desperation!) I was on 250 mg daily. Now I'm on 100. I only started to reduce these after the awful withdrawal from pramipexol didn't help anything. At least I'm off that!
I hear your comments about too many things at once and will discuss with my GP. I tend to agree to stabalise as I am and then go one at a time. Will see GP on Tuesday.
I also have to/want to, get off paroxetine, but that has to be managed very carefully due to a very long history of depression etc. My neurologist had suggested changing four years ago but given the experience I've had with depression and many hospitalisations, it was decided at the time that if the drugs I was on for RL made life tolerable, which they did until this last year again, then I should stay on it. Now though I do believe it's time to get off it and if necessary, change to something not given to exacerbating RL. I'm a lot stronger and more resilient now (barring last weeks sleep deprivation induced bunk!) but may still need chemical support for my brain.
Some very interesting observations about meditation and RL! I'm in the second week of my meditation 'course' and this evening I went to practice my mediation. I lay down and was immediately besieged by a nasty cramp in my right big toe. I was going to get up as it was not comfortable but decided instead to use the skills I'm learning and 'breathe' into it and focus on my breathing. I could feel the cramp but by continuing to relax and breathe, the pain of it was 'neutralised'. I still felt it but not as one usually experiences pain and certainly there was no suffering????
Because I didn't move it, the cramp continued for the 10 minutes of the meditation along with the awareness of pain, but not suffering of pain. I also began to experience a mild RL attack in the other leg. Once again I breathed into it and I didn't need to move or to wriggle. Again, I felt it, but by breathing into it and relaxing, it didn't overwhelm and get 'painful'.
Just thought someone might be interested in my progress so far!
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