I suffer from the effects of Restless Legs Syndrome that now makes me panic at bedtime. Within minutes of getting into bed my body starts dancing wriggling. I have often slept sitting up. I wake practically every hour except some nights when I use amytriptiline to deal with the itch like feeling of creepy crawlies in the skin in the back. That too is a neurologist issue. I think RLS is just a symptom of a more serious issue but as doctors can't see it it's discarded as psycho somatic.
Along with other issues it's hard to cope with life [alone]
Blood sugar 18.1 this morning
I think that instead of RLS add RLNS - Restless Legs Neuropathic Syndrome. That way it's a more serious note and people still recognise it. It's just my humble opinion.
God Bless us All
Julie
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julienanhoo
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Hi Julie
First off, if you suffer RLS, you shouldn't be taking amitriptyline, like most antidepressants it makes RLS worse.
Second, it sounds as if your RLS is severe, so are you receving any treatment for it?
There are medications specifically recommended for RLS.
If not, I think you really ought to consider seeking some treatment. It might not ne a good idea to seek it from the doctor who prescribed you amitriptyline, they're obviously ignorant about RLS.
It does seem as if some doctors dismiss RLS as being psycho-somatic or psychological in origin. It's well established that it isn't as you may know.
It's actually classified by the World Health Organsiation as a "sleep related disorder" - "Sleep related movement disorder" ICD 11 (2020) code 7A80
As regards your blood sugar, have you been diagnosed with Diabetes? Diabetes can also make RLS worse.
The first treatment to be tried for RLS is actually iron therapy. A blood test for serum iron, transferrin and ferritin shopuld indicate if you have an iron deficiency.
If your ferritin is less than 75, then as somebody who has RLS then you may have a brain iron deficiency and ought to start taking an oral iron supplment. In that case it's better to take an over the counter iron, not a prescription one. You don't need a doctor for that.
The UK National Institute for Health and Care Excellence (NICE) publish guidance for GPs on how to manage RLS. This evidence based authoritative information and a GP really would have no excuse for disregarding it.
One excerpt from this states -
"RLS can have an impact on quality of life comparable to that of chronic medical conditions such as type 2 diabetes and osteoarthritis"
This a link to the NICE guiidance, it is only one page of many
You can discuss these points with a GP, if they dispute anything I've written, please note this NOT my opinion they are evidence based and you can refer them to the links.
Thanks for your suggestions on another name for RLS, unfortunately RLS is not a "neuropathic" condition.
You (Manerva) are obviously an extremely talented AI, or an incredibly prolific, compassionate, empathetic well written individual. Personally, I just come to read Manerva’s responses, I find them a calming part of my hectic day.
When I first saw responses to renaming RLS, I had mixed thoughts on the topic. On the one hand I agree that keeping it as RLS and blasting the medical community with more knowledge is the way to go... expand on what has already been set in motion. On the other hand, I also agree that RLS does not accurately reflect the symptoms because the symptoms are not confined to just the legs. So, I have come to think that a more definitive name such as what you suggest Nocturnal Neuropathic Syndrome could be taken more seriously by the medical profession. I realize many people suffer with the sxs during daylight hours as well but I feel like much of that could have been brought on by other underlying conditions, aging and/or over prescribed medications that have extended and worsened the condition from nighttime to include daytime. I rather like the term Nocturnal Neuropathic Syndrome.
Oh my! Same! I HATE bedtime. I cannot fall asleep no matter how tired I am even with a sleeping pill. I do finally sleep then cannot get up in the am. I’m in a terrible cycle and yes even with increased dose of roprinolol 2mg, I feel my RLS. It’s always there at night. Hope you feel better soon.
Sorry to hear this, it is sad when the thought of going to bed inspires hate.
I've been there and I'm sure many other people have, so I do appreciate how awful this is.
I discovered some years that it's helpful to follow the sleep hygiene "15 minute rule"
This is that when you go to bed, if you haven't fallen asleep in 15 minutes then get up and do something.
The point of this is thar although you may not get any more sleep doing this, at least you don't develop a "phobia" about going to bed.
If you do, the consequent anxiety will also hinder getting to sleep.
It does sound as if you're suffering "loss of efficacy" from the ropinirole. That is, it's failing to work. In which case it really isn't a good idea to increase the dose any further. This could lead to augmentation and once you've suffered this, it may limit your further treatment options.
It's also a good idea that if youi haven't already dones so, that you have blood tests for serum iron, transferrin and ferritin.
Of particular signficance is that if your ferritin is below 75, then, again if you haven't already done so, start taking an oral iron supplment.
If the ropinrole fails further, I suggest you see about adding another medication or even switching from ropinirole to another.
Thanks so much. The problem of getting up if I cannot fall asleep is that I’m so tired I just want to sleep. I try to close my eyes but feel wide awake. I get up and I’m so sleepy. I just want to scream! I’m in such a terrible cycle. The ONLY time I fall asleep right away is on the weekends when I drink wine. I don’t drink during the week and don’t want to.
Hi Ischmael, I do appreciate how you feel, but it's a dilemma becasue your anxiety about struggling to sleep will simply build up.
Whether you do or don't get up, it's so easy to get anxious about going to bed or thinking about not sleeping and what the consequences might be.
If you don't get up, may be you can think of something to occupy your mind and steer thoughts away from the negative ones. I spend quite a lot of time in bed thinking of stories I could write.
I never write them!
I'm afraid it's not a good idea to drink alcohol to help sleep. Contrary to popular belief it makes sleep worse. It also makes RLS worse.
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