Hi everyone, I just feel as if I'm going crazy trying to find a reason why my legs are bad sometimes and not others. I have some nights when I am only awake once and a night like last night where I had about 90 minutes disturbed sleep through the night and up the rest!
I feel as if there's some dietary cause and am looking at glutamate and Lectin as well as FODMAP foods and sugar, and all the usual culprits. My diet is getting more and more restricted as I find more and more foods that I think are suspects. I've lost weight which really isn't a problem as I need to, but food is now something that I eat because I need energy and not for pleasure, (not the biggest deal). I want to test the FODMAP foods but I can't seem to get a period where things are stable to see if I have reactions to them.
I'm currently taking Lyrica, 200 mg and Tramadol, 100 mg twice daily.
Any advice would be very much appreciated. Thank you.
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restlessstoz
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There can be so many trigger sources, that it can be a nightmare isolating your particular culprits.
I've written many times here on the various triggers, and on keeping a diary. I'm sure you are already doing that.
It has to be forensic at your stage.
For instance, my partner makes lovely stews with organic stock cubes. I was reacting so often that I checked the stock cube list of ingredients. " No added msg" -- well , that sounds great, I thought. Then I googled that particular phrase. Very enlightening!!🤪😜
I seem to have a particularly sensitive constitution, by reacting to a huge range of additives etc.
Raising agents, sweeteners, sulphites/ sulphates ( beer and processed meats) oxalate vegetables --- the list goes on.
I dread eating out . Sauces and creams are dynamite.
I'm so lucky to be on opioids ,which seem to control most episodes.
I don't know if any of that helps you, but you are not alone. It is a long road and hopefully you will get some relief by following your path as at present.
Thank you for your encouragement Madlegs. It really does help to know that others find things so hard as well. It is also helpful to know that I am on the right track to be thinking like this. It is so hard when there isn't much left to eat but unless I was on better controlling drugs, it seems the only way to go. Especially when there isn't always a lot of research behind these things and RL, I feel as if I'm grasping at straws.
As you say, a food diary is essential as it's getting more and more complex.
That is a bit of an enigmatic sentence Parminter! Yes, I've considered that it may be not food related at all which is even more confusing... and leaves me even more in the dark. I'm thinking of having some tests for intolerances which might short cut the extended testing that I'm doing. Expensive but I'm getting desperate to find some answers and that at least would be based on something scientific other than perhaps 'coincidental' bouts of RL.
'eccentric and malevolent' is a good way to describe the experience of RL!
Yes, I have heard that Tramadol can cause augmentation. I will discuss a change when I see my doctor next. Would you have to decrease the Tramadol gradually or could it be a straight swap? I don't do very well on other opioids as I get sweats and anxiety after a time but it would at least give me an idea if I'm augmenting on Tramadol.
I did think when I was in the garden earlier, I wonder how any of our GPs or neurologists would treat themselves if they had RL! I'm sure they'd be a lot more considerate and helpful and better advocates for us.
I wish all doctors could have at least a six-month bout of RLS.....
I don't think that you need to titrate down from an opioid, just switch if you can.
They are very different one from another - I react poorly to codeine, which gives me a dazed fluttery feeling, but have no reactions to methadone except relief. There is the constipation of course, but for me codeine is much worse than methadone, which is 30 X stronger. I think we are inclined to think it is just a matter of strength of the same/similar thing - it isn't.
And we are very sensitive types - we have a thinned sensory cortex, which leaves us vulnerable to just about everything, both physical and mental.
What a bunch we are! I keep looking for the up-side to this, but it is hard to find, except that this suffering makes us empathetic. I would rather be thick-as-a-brick and RLS-free!
I do wish I could try methadone but of course here it's not easy to get on. However, I will try going off the tramadol and onto another opioid and see if it helps. As you know, we will try anything!!!
A thinned sensory cortex- I've just read about the findings of research and the sensory cortex. It's very interesting and gives a physical reason for the disease- which as you suggest, has not to do with food intolerances. However, as I've read so often, there seem to be a lot of different facets to RL, and no one person seems to respond just like another person. How complex it is.
You know, an upside to this might be that people with RL are always researching and learning new things so maybe it's protective against dementia. Well, that's looking on a VERY positive slant!
I wish we could forward medical research 50 years and see if they've come to an understanding of RL or found a cure?
It was not too easy to get methadone here. Once I had convinced my doctor, which was relatively easy, the fun started. Many phones were slammed down, I had a lot of really funny looks, and I still get mild grillings from pharmacists.
I take the liquid sort that heroin addicts take so I suppose everyone thought I was an ancient addict. Mind you, that should not have incurred any judgement, should it?
Little children don't go running to Mum saying "I want to be a heroin addict with RLS when I grow up. Yippee!"
The thinning of the cortex added to the dopamine deficit accounts for all the difficulties we face. This is not for sissies, and as I am a bit of a sissy...........
Ho-hum.
I doubt a cure is in view, it is too complex. If it were just one gene, maybe, but so many are involved.
But you're right, we do get smart. Smarty-Pants with RLS is okay. Could be worse.
I've just spent a stimulating hour plus reading some previous posts that you have written. I've found a few interesting things that I didn't know. One was the link between PTSD and RL. I have suffered severe trauma when married and know the way I respond to loud noises etc. I thought it was 'simple' PTSD. I have suffered for many years since with huge stress coping with children who were affected by the circumstances within my marriage... and still do. A psychologist I saw recently just sat and looked at me when I told him what my current life is like- a walk in the park compared to my marriage, but compared with most people's, a living nightmare. He was surprised I even survived, let alone worked and played (watercolour painting, bonsai and gardening amongst others) and coped, (well, mostly).
I know being stressed affects my RL and have found a correlation with higher than normal stress and a bad episode. Now it is all seeming a little bit clearer. Or not!!!
I also have more than average osteo-arthritis for my age, and have often wondered if there's a correlation there with stress too. Such a lot to work out and no hope of finding the answers. Thank you for keeping me amused for an hour or so. You're comments are such a good read! A quick wit and great repartee! And even some science thrown in for free. Such stimulating reading.
Yes, I'm afraid that many co-morbidities (is that not a horrible term?) can come along with RLS.
Same genes, and many/all of them to do with the thinned somatosensory cortex and the whacked-out dopamine system.
Lifelong anxiety, episodes of depression, ADD, PTSD and OCD. But maybe rather smart because of lateral thinking.
How do we survive?
Beats me. But it is good to know some of the science, so that we do not constantly blame ourselves for something that we really cannot help. Or allow others to blame us.
This is very interesting. I have also noticed that small doses of codeine seem to work much better than large ones. What is the enzyme which I obviously lack.
Thanks B. I have also found apples to disagree and other things too but now it's just too confusing. I'm seeing my GP in an hour as only 90 minutes sleep in several patches overnight. I can't keep this up! Thanks for your support. I'll take it all into consideration.
I haven't any experience at getting off the drugs but I have heard of a few people who have started the FODMAP diet and been able to get off the drugs as a result.
Its always possible that food will not affect your RLS. Mine is inherited from either mother or father or both - both had "jumpey legs" when I was very young.
Just for three months decide that you are going to eat boring plain food.
For breakfast A banana then a bowl of rice with some gluten free soy sauce. Finish off with some rice cakes with peanut butter and tasty cheese. Drink water and decaf tea or decaf coffee with lactose free milk and no sugar
Lunch Rice again. A can of tuna in olive oil. I have sweet chilli sauce on this but I have proved that sweet chilli sauce doesn't upset me.
Dinner Meat, potatoes, green beans rice and I have some lactose strawberry flavoured yoghurt for desert.
Stick to this for 3 months and see what happens.
Snacks are rice cakes with some strawberry jam but be careful because (at least in Australia) many jams have apples or pears as fillers. Its just called fruit on the label and perhaps even on the list of ingredient. Lets them claim 100% fruit when its really 10% strawberries and 90% poison for RLS patients.
Its really a diet for IBS but it works for me and some other people.
Get the MONASH FODMAP App but be really conservative for the first three months. I also gave up all caffiene, alcohol, gluten and anything with lactose in it.
There is an assumption that your drugs are not causing the RLS because of augmentation.
I can't advise on eating this diet while getting off the drugs. Sounds like a good idea but it might make it harder to find the willpower to get off the drugs. Or do I mean "won't power")
Hi Graham, Thank you for your long response. your take on the FODMAP diet is well worth trying. I've been Fodmapping for the last five months and my trouble is getting to a point were symptoms are controlled so that I can tell if a trigger is triggering! My legs just don't stop completely and are still horrendous very often. So I don't think FODMAPS are entirely the answer for me so i'm also looking at patterns of flare-ups and have thought glutamate may also be a problem, then Lectins came up somewhere so I'm thinking of those too. It really means there's nothing that I can eat! Much as I want to avoid all the triggers, if I can't find out what they are with certainty, it's a bit futile. If only my symptoms were covered by good medication then I could eat more. However, I can't eat more because they're not and I can test foods because I don't have a baseline to test from. Last night I was up for five hours between 11.30 pm and 6.30! It didn't leave much room for sleep. Any suggestions very gratefully received... before I go mad(der than I am now).
Thanks for your understanding reply Poundpup69. It sounds like you've been in some very dark places as we all seem to at times. I'm surprised more of us don't opt out... it certainly can be very tempting.
I'm now off Lyrica, it didn't work and ended up seeming to augment. Now back on Pramipexole for as long as it works, and Targin. Having some relief thankfully as I have another major health issue at the moment and surgery in February. Now it's just getting to February and over this particular hurdle.
Good luck with your RL journey and do keep persisting. Where there's life there's hope. There is always someone here who'll listen and encourage...
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Hello and thanks for having me in this group
Prebiotics and RLS
Trying to manage, and afraid
Methadone
