I joined and was actively following this site over 2 yrs ago but tonite my profile says I've never posted, so I'm introducing myself!
My RLS has not subsided in years, but learning about augmentation and getting my Ropinerole down to 1mg has helped somewhat- isn't it a weird experience to find yourself providing an education to your GP who's never heard of RLS augmentation. Being an expert in that situation is highly overrated...
I no longer drink, even a single beer or glass of wine will leave me hopping all night. That stinks, but its a small price to pay to the RLS demons.
I'm now going thru wonderful menopause, and my sleep is tortured even without the RLS. The 20 temperature changes thru-out the night, the insomnia and tossing and turning... MY CONCERN IS THIS... since I had my kids 18 & 20 years ago, I have not worked full time- part time, flexible schedules only...ones that would allow me to get up at 9:30 am when I frequently don't find solid sleep until 5 or 6 am. BUT NOW, I'm interviewing next week for a full-time job in my field, folks in high places are really interested-and I'm feeling there's a good chance I'll get this job. So, I ask (in the middle of the night, right now..), HOW DO YOU manage a full-time job when you may not get to sleep til 6am??? I'm terrified of how I would manage this. A day or 2, okay, but sleep deprivation accumulates and begins to make my brain non-functional. I'm imagining being at my job in body only- but disappointing them greatly when my brain just can't keep up with demanding work. I interview a week from today- and as much as I want this job, I'm terrified I'll get it. What are the experiences of folks who work full time- how do you manage??? And now that it's 4:30 a.m., I'm going to try and get a few hours of sleep...ugh
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The fact that you've found that beer and wine brings on rls for you suggests to me that you may be sensitive to raised blood sugar. Sugar is an inflammatory food, My theory is that it causes inflammation in the membranes of the joints, which results in the itchy, uncomfortable feeling.
Try eliminating sugar from your diet, and eating less carbohydrates.
Hi. I could have written your comments. I go to bed off and on each night, but still walk the floor all night. However, if there is a bright side to this problem it would be that as long as I'm up I get chores done, like mopping floors at 3 AM (fun). Around 4 to 5 AM, I can finally get some sleep. I did have a job before my RLS got extremely bad. Fortunately I am retired now, so am able to sleep as long as I can. Still not the restful sleep a person needs. Maybe since this is basically a nighttime condition, could it be associated with hormonal changes within the body as the sun goes down. Sure hoping you find a way to handle your problem. When it interferes with life functions, that stinks. Good luck.
Ιts very difficult to go to work in the morning at least for me.But i cut down on pramipexole because of augmentation and i am off pram about 2 months. The withdrawal syndrome is hard but hopefully it will end and my rls will settle down.If you are augmented you should consider to cut down on dopamine agonists.Good luck!
I have some restless legs. I tend to jiggle my knees when I sit a lot. That's really about it though. No problems related to sleep (well not really, at least not related!). I do sometimes take Zopiclone that was most effective for me for sleep. I'm not on any medication for RLS I'm on a lot of other meds and my General Practitioner (NHS UK Doc) suggested I shouldn't start one. I am happy with my state generally, except I was recently rediagnosed with Type 2 Diabetes, likely caused by Amisulpiride (which I've been taking an increased dose of recently).
I wish you people with severe RLS luck. I didn't find out about it until very recently!
Maybe modafil would help? Not only does it wake you up during the day but there is some evidence it assists with rls.
Are you only taking 1mg ropinerole for your rls? Maybe it would be worth adding in an anti convulsant such as pregabalin. These help with rls and are also good for inducing sleep. I’m not sure how effective it would be against menopause symptoms. Dietary changes are very effective for many
Even without menopausal difficulties, working full time with rls is very challenging. I am struggling to manage it and my symptoms are relatively under control at the moment (I use dipyridamole, pregabalin, pramipexole and ldn - all in very low doses). The early start really makes for difficulties.
When my RLS was severe the only sleep I got was to raise my legs almost vertical on a collection of cushions, maybe managing 2-3 hours. I would drag myself to work - hoping the next night would be different. Symptom cure with iron supplements, but nagging insomnia remains. The good news in all this is the Glutamate fueled insomnia is mostly energizing during the workday. I am never sleepy during the day.
My job had an early start and then I was on call until midnight. I was lucky and I was retrenched by a re-organisation before I killed myself driving home at 4am. I didn't realise how bad I was getting with memory loss and other effects of sleep deprivation.
I started on a gluten free diet then moved to a FODMAP diet and stopped eating gluten, lactose, alcohol and caffiene. I don't take any medication but I am trying to increase my blood ferriten level from about 80 toward 200 by taking iron biglcynate with vitamin C every second day. If I slip far from the diet then I can lose two or three nights sleep.
I am now self employed so I can adapt better to a late start but my brain is working better these days. There are a couple of diets that have definately helped people. I will send a note by private messenger.
Hi Graham, I was wondering, how much iron bisglycinate do you take every second day? Also do you think the vitamin C is helping? My understanding was that the body can absorb iron bisglycinate without vitamin C but maybe it would absorb even more if I took vit C. I cannot seem to get my iron levels above about 80 (and they tend to start falling at the least excuse). My hopes of getting a transfusion were dashed recently when my GP couldn't manage to source a suitable solution for transfusion. Thanks.
Hi I take 2 x 87.7mg iron biglycinate, that is 24mg of iron per tablet, and 1500 mg of Vitamin C My ferriten level is trending upward from 85 in October to 91 in February Its in the right direction but I don't know the variability of the readings.
Every measurement has variation. If I had 5 measurements on the same day as far as I know they might all be identical or they might range from (say) 85 to 95. So I don't know if this indicates my level is really going up or is just a normal variation in measurement. It just occurred to me that the report from the pathology lab should show the accuracy of the measurement. eg 91 (+/- 3) This would help people asses whether we are seeing random measurement errors or a real trend.
I plan to get another measurement about July. I can't ask for too many but I now appreciate that iron is a bit dangerous and I must be careful it doesn;t go up suddenly to a high level. 200 is apparently safe according to what I find on the WWW. By the apparent rate of increase over the last few months 200 looks to be a long time away so I think once every 6 months seems safe.
I would be taking Vitamin C anyway because I believe it reduces my susceptibility to colds and perhaps other things. I used to get regular cold sores on my lips which means I contain the herpes virus, cold sore variety, Apparently you never get rid of the virus, and it flares up if you get a bit run down and, in my case, if I leave my lip out in the sun too long and get a mild sunburn. I am sure Vitamin C suppresses this virus and I haven't had a significant cold sore for many years.
I always managed to survive lack of sleep Probably because Of working night duty frequently. I take tramadol for RLS which curiously keeps me awake. I am leery about taking any sleeping help having had bad experiences with them so I battle on. Sorry to not be very helpful on the other hand misery loves company.
I am sorry to say that my RLS got significantly worse when I started menopause and my sleep patterns were AWFUL. My anxiety levels also went up which apparently is a classic menopause symptom. I used to lie in bed and listen to radio dramas or music on my ipod during the night which helped to some extent especially if the story was good/ engrossing. Valerian helped to some extent (Kalms actually, which have a couple of ingredients in) and taking menopause herbal stuff decreased the hot flushes a bit which were what would wake me up. I also got valium from the doc which helped calm me down a bit before going to bed. I used to say to my friends at work to not talk to me when I first came in because I used to feel so irritable and crap, but did manage to keep going working full - time. For me, stress and anxieties are big triggers for RLS, which just went through the roof during the menopause. Perhaps trying to control those will contribute towards some relief.
p.s. if I was REALLY tired, as in at the end of the working week with crap sleep, I would sleep a bit better, also aided by occasional sleeping pills - I would save them until I was really desperate!
Greetings. My heart is out to you for all that you're going through.
One option you might consider is kratom. I didn't discover it until after I had retired, but if I had known about it before, I would have used it. As it is now, I take it shortly after arising in the morning (and throughout the day as needed, plus right before bed), and it allows me to function normally. I could easily carry on a day's work with its support.
Of course, everyone's biochemistry is different, and you would want to test it during a few days when you're not working to see if it provides the relief you need. Also, some other considerations are: (1) Does your new employer require drug tests? (2) Will kratom appear on a drug test result? (I don't know.) (3) If it did, would they care, especially if they knew of your RLS condition?
Wishing you great success in your interview and in your search for RLS relief.
I am semi retired and work odd hours occasionally but I am surprised how with disturbed nights I am still quite alert in the mornings. I am on 50mg Tramadol and 1.6g Gabapentin (which I will start reducing soon). I can feel sleepy in an afternoon and early evening but I find my Tramadol wakes me up and keeps me alert. I often wonder if the tiredness in an afternoon is the result of the previous days Tramadol (a sort of cycle). To minimise my tiredness I get up as soon as RLS wakes me and do a job or watch TV for up to 30 minutes. Back to bed till RLS returns and same again. Usually I am up 3 times max per night so I loose 1.5 hours maxi and am fine next morning. I don’t get worked up about it any more, it’s just a routine and I know I will cope next morning. Worrying about the next day, tiredness and work used to really stress me and made RLS worse. Accepting the routine, knowing I could cope helped enormously to relax and get better sleep.
Kudos, John. Your attitude is refreshingly positive. Incidentally when I used OxyContin to control my rls I noticed something similar in the afternoon (I took the whole dose shortly before bedtime to deal with the nocturnal symptoms) and I am pretty sure it was like a mini-withdrawal so you may be right about transfix being the culprit.
Hi I feel your pain I really do. I work full time UK. I've been to occupational. Health who classed rls as a disability under the equality act. They changed my hours for 3 month to 10-6 which was OK in the morning but then when it got to 4pm I was shattered so working till 6pm was a nightmare. I'm now back on 9 to 5 which is a nightmare if I've had a bad night. My manager been good really we have an agreement if I've had a bad night to wots app her and if she's read it it will show the 2 ticks and then I can go back to sleep. As she knows I've had a bad night and go in later on only an hour later which helps but still tired when I get into work!! And when it gets to after 4pm!! It's still ongoing. I'm having a bad time with my rls at the moment and I've had to to book annual leave to her some rest well try to sleep had a bad night last night but no work for a week. I'm seeing a private NHS neurologist on sat 3rd April because I have an o going battle with my GPS over my rls they haven't a clue about it just give me DAs which I weaned off due to augmentation now on gabapentin but now this isn't helping either. Working full time is a nightmare with this disease I wish more medical professionals would understand this disease too. I hope you get a good manager who understands what you go through good luck 🙏🙏
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