I'm 60. I was diagnosed 1 month ago with RLS. I've had symptoms since I was about 13 years old. I'm taking Pregabalin and have just moved onto my clinical dose. I'm not enjoying the side effects but hope they will pass.
My life has been one of dealing with excessive daytime sleepiness, mental health problems, personality and behavioural problems and a host of other issues. I've been treated for depression and had every anti-depressant you could name thrown at me. I was incorrectly diagnosed with severe obstructive sleep apnea in 2016 and this was only discovered in 2021 after five years of trying to cope with CPAP.
Am I allowed to feel fed up?
AsleepInYorkshire (AiY)
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AsleepInYorkshire
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Can you give me more information so I can help you. How long have you been on pregabalin? What dose are you on? What are the side effects? Does it control your RLS? Have you had your ferritin checked?
What medicines and OTC supplements are you taking? Most antidepressants and many other medicines and OTC supplements make RLS worse. If you list them here I can tell you whether they make RLS worse and can perhaps give you a safe substitute.
yes !!you can be allowed to fed up and I will join you,with the depression and other symptoms with this condition It is amazing to me how many antidepressants can be packed onto us instead of any other type of treatment.we all walk a lonely road but at least these groups give us hope and compassion.
AsleepInYorkshire, yes, you are certainly allowed to feel fed up; as well as depressed, anxious and pissed off at the world.
I have a similar situation as you, with extreme daytime sleepiness and fatigue. I never was depressed or anxious until I became chronically sleep-deprived, so those mental health symptoms, in my case, are due to losing the ability to function in the world as I used to.
The website pinged me to weigh in on pregabalin so I will, though I don't have much to offer since I stopped it after just 2 nights. I may have been hasty, but I was terrified to take another dose (my anxiety flaring up) because the day after my second dose I had profound depression, way beyond my baseline and really really wanted to kill myself. Scary. But so many people take it without this problem so maybe in my case it was because I had made a direct switch from low-dose clonazepam and oxycodone (just 2.5 mg) to pregabalin 50 mg and what I was experiencing was actually withdrawal from the benzon/opioid and not due to the pregabalin. I would like to do a full drug wash- out and try the pregalin again because supposedly it is good for people with concurrent anxiety and insomnia, both of which I have. So, from my research (I am a physician) , pregabalin should be a good drug for RLS even if my personal experience was negative. I think you should give it a fair chance and see if the side effects improve over time (haha, listen to me). One other thing. When I was practicing medicine I prescribed Lyrica (pregabalin) for a patient with peripheral neuropathy and she complained that "it makes me stupid." But she was taking it day and evening. Maybe by just taking it in evening we can be stupid while we are asleep and smart during the day??
Oh yes, I thought I was reading my biography except that I didn’t get RLS until I was in my 40’s (now in my 70’s). What dose are you on? I augmented on 600mg which is the maximum so now I take 150mg early evening and 300mg when I go to bed. However, I’m also taking a low dose of slow release morphine for severe arthritis in my back and knee so that helps too.
I get drowsy too so a make a point of having a nap of 1-2 hrs in the afternoon. I know I’m not going to sleep properly at night anyway so might as well make up for it during the day.
Sometimes it’s so bad I become a night owl sleeping from 6 am till 2 pm! As I’m retired and my husband is out from 7.30am till 7pm I can pretty much just go with the flow. If I stay in bed when it’s bad then I get so depressed and if the arthritis plays up too then I just end up crying.
So there are sites you can use for the bad times, this being one of them. You are not alone and there’s plenty of advice from others in our situation. I’m in the UK and I just wish doctors were clued up on this disease but most have never heard of it - or don’t want to as it’s not part of their training curriculum. Apparently the reason for that is that it’s one of those ‘ailments’ which less than 5% of the population get. Ha ha 😂, how come 3 out of 10 ladies on my ward during a recent trip to hospital have it. That’s a whopping 33%.
I take combination of pregabalin (100mg) and ropinirole (dose now being reduced) and this works for me most of the time. When the RLS gets bad I take some Clonazepam — which enables me to sleep.
Your situation sounds very severe and I am sorry you are suffering so much. The pregabalin for me was a welcome relief once I had worked out that taking one pregabalin and one diazepam every other night worked better for me rather than taking pregabalin every night on its own. But the thing is every body is different and what works for one does not necessarily work for everyone else plus all the other problems you have going on will not make medication relief easy, if pregabalin is not working there are other medications that other people take you will read this on here from other suffers and I do hope you find a way to resolve your problem let me just mention that the only side affect I had was sleepiness the next day which is something I have learned to live with. I wish you the very best in your search for the right method that will work for you and I hope you find it soon. Best wishes Catkins.
OK - no answers to my questions, so I will still try to help you. If you have been on pregabalin less than 3 weeks, it won't be fully effective yet. Side effects are usually mild and disappear after a few weeks and the few that don't are usually worth it for the control of your RLS. As far as the dose, the usual starting dose is 75 mg and after 3 weeks it can be increased by 25 mg every couple of days. The usual effective dose is 200 to 300 mg. Take it 1 to 2 hours before you go to bed. If you take magnesium take it 3 hours before the pregabalin. If you haven't had your ferritin checked, you should do so since increasing it to 100 or more helps 60% of those of us with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice. A safe antidepressant for RLS is Wellbutrin or Trazodone. Almost all of the rest make RLS worse for many. If you are taking clonazepam, it has a half-life of 40 hours and can cause daytime sleepiness as can Valium. Since you have other medical problems, you are probably taking medicines and perhaps OTC supplements which can make RLS worse. There are safe substitutes for some, but I can't provide them unless I know what you are taking as I have a many pages single spaced list of them. In general some medications that make restless legs worse for many people are sedating antihistamines not all antihistamines, SSRI and SNRI antidepressants, tricyclic antidepressants, statins, diuretics, estrogen, lithium, melatonin,calcium blockers, calcium antagonists, steroids. central nervous system stimulants, dopamine antagonists, many but not all anti-nausea medicines, some but not all antacids, some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners, some but not all anti-anxiety, many medicines that treat bipolar and other mental health problems, many medicines that treat epilepsy and many drugs that treat GERD.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Sorry I haven't responded promptly to all your lovely heart warming, supportive and informative messages. Apart from the simple fact that I didn't know what to say, as I've found the responses, quite literally, overwhelming, I've been pre-occupied with a a few other issues. Today I've taken my good lady (or should I say my better half) into hospital for a double discectomy. I've taken headphones to another hospital for her father. He's been there for 7 weeks now and has just managed to get covid for second time. I've also had to collect my 15 year old daughter from her friends house and pop to my other-in-laws to sort out the sale of her settee.
As I write I am still getting some "slight" side effects from my medication. Mostly in my lower legs. It's not a pain, more a discomfort. Nuisance value.
In the 47 years that I have wandered in the wilderness of no diagnosis or an incorrect diagnosis I have witnessed my life fall apart. The lack of sleep, sleep deprivation and sleep debt, accumulated and I moved beyond the realms of social acceptance. I became, irritable, violent and aggressive. I begged for help. But it was never forthcoming.
My childhood was ruled over by my father's bad temper. With the benefit of hindsight he clearly showed the symptoms of the disease. And so did his father and his granddad before.
I have one sister. And on my fathers side I have 8 cousins. So in all, there are 10 paternal siblings.
Of those ten;
Three have committed suicide.
Three have serious mental health problems.
One (me) has had serious mental health problems but is now without (after diagnosis of RLS)
Two have mild mental health problems.
One has no mental health problems at all.
Of the above 50% of all their children have mental health problems. I believe that my diagnosis of RLS may be the key to unlock the curse that pervades my paternal families mental health problems.
I've stopped hoping. I'm exhausted. Which makes me cross with myself. I hasten to add I'm safe.
I can't describe how I feel. I'm empty. I just want to go to bed at 11pm and wake up at 7am and feel refreshed. I daren't wish or ask for that anymore. I want to hope that this new medication releases me from the prison I've been in for 47 years.
But none of this is for me. I have a 15 year old daughter. This is clearly a congenital disease in my mind. A family curse.
It's taken 47 years to get to my diagnosis. It will take 47 seconds to spot the symptoms in my daughter. This condition ends with me. If my daughter has it I'm prepared.
I can't thank you all enough. Your replies have inspired me to be a little stronger.
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