hi, my symptoms are not classic RLS but there does appear to have some overlap. I first started getting up during the night to go to the bathroom around 2013 (I was 42 years old at the time). This progresively got worse over the next 10 years to the point where on some nights I was getting up every 30 minutes! I was also having severe problems getting to sleep and would feel an urge to go to the bathroom the moment I would lie down. I've seen every Urologist in Hong Kong and have had various tests and assessments to conclude that my Prostate is well within range for my age. Whats more, I never had any issues with going to the bathroom during the day.
Around the same time, I also developed a pain in my left knee which would also only arise during the night. When I would get up and walk around, the pain would subside. More recently, I found I was getting up due to the severe pain in my knee, rather than a need to visit the bathroom (I'd end up going to the bathroom anyway, since I was up!). I've had MRI scans done on my knee which haven't revealed any material issues. In the last few weeks the pain has moved down from my knee to my left shin. As with my knee, the pain would subside when I walked around, and I wouldn't suffer from this pain during the day
A few years ago I started taking mild sleep aids (antihisthamines). This would help me initially fall asleep, and also help me get back to sleep when I woke up during the night. However, looking back, its possible that the antihistamine's have had an adverse effect in terms of the number of times I would wake up during the night (I read somewhere that antihisthamine's can have an adverse effect on RLS?)
For me, the 'urge to move' was not really a sensation in my leg(s), but I would get this feeling in my abdomen. The sensation in my knee/ shin was not really pins and needles, or any sort of crawling sensation (which I understand is more typical of RLS?), rather just a dull pain, which would subside if I walked around.
I recently spoke with a sleep specialist from Guys and St Thomas's hospital in London (Dr Konda) who suggested that there is a possibility I have RLS. She asked me to get a Ferritin test done, which I did last week. My levels came back at 120.
I'm really at my wits end, so any feedback/ thoughts would be greatly appreciated!
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no, definitely no tickling in the feet. But I had read somewhere that RLS isn't always impacting the legs, can be the arms or sometimes even the torso?
I've had RLS since 2015 and it used to only be in my legs. About 1 1/2 years ago I started to get it in my hands too. Definately not from augmentation. I have never taken anything other than gabapentin.
Regarding the urge to go to the bathroom, I have found that when my bladder is full then I start having the RLS in my legs. But I don't think Cappuchino sounds like RLS.
You also experience pain, which isn't common, but is definitely a symptom of RLS.
The fact that movement relieves the symptoms most definitely points to RLS.
And RLS can be triggered by anti histamines.
All sedating anti histamines and cough and cold meds containing diphenhydramine all trigger/worsen RLS.
So, stop sedating anti histamines. Safe options are cetirizine and loratedine.
Your serum ferritin is above the recommended levels set out in the Mayo Clinic Algorithm, but many people do need higher levels.
But, in your case, it would seem you have medication induced RLS. Mostly it resolves when you remove the offending med, but sometimes it doesnt.
Are you on any other trigger meds? RLS-UK website lists the common culprits under Treatments and you scroll down to Medications to Avoid.
Anti depressants, statins, beta blockers and PPI gastric meds are the usual meds that cause RLS.
You may need medications to control the RLS and restless bladder.
Do NOT agree to dopamine agonists ( Ropinirole, Pramipexole or Neupro patch). These are no longer first line treatment because they will ALL cause severe worsening of RLS ( in weeks/months/ years) & withdrawal is absolute hell and doctors give ZERO help with withdrawal symptoms. They also cause Impulse Control Disorder ( gambling, overspending, risky behaviour). We have members that have lost homes, careers, marriages, reputations because of this. We can sue doctors for negligence if they fail to warn of ICD, but that is also stressful.
The American Academy of Sleep Medicine has now relegated DAs to 'end of life scenarios'. Guys in London have been known to prescribe DAs as first line treatment, so do bear that in mind.
The drugs now prescribed first line are gabapentinoids. Again, look at RLS-UK website for when and how to take. At night only.
Hopefully, stopping sedating anti histamines will settle your symptoms after 2 or 3 months. If not, you may have to try pregabalin or gabapentin.
thank you for the feedback. I am planning to speak to a neurologist in Hong Kong and will ask for a couple of days of the DA to see if it helps. Even if its not RLS, I do feel what I have is a neurological disorder so the medication may well help. Will update this forum with feedback
I don't think it is RLS. Your urge to go to the bathroom is only at night whereas OAB - overactive bladder occurs during the daytime as well. The articles just indicate that some people have both not that OAB is RLS.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
The way to test and find out is to take .25 mg of ropinirole for 2 days ONLY and see if this resolves or greatly improves your symptoms. If not then it is not RLS. If it does then STOP it since it is a dopamine agonist as Joolsg mentions and instead ask for gabapentin or pregabalin. You will strongly be tempted to stay on it, but DON'T.
Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 up-to-date on it at Https://mayoclinicproceedings.org/a...
And yes switch to a non sedating antihistamine.
For your OAB you might get from amazon cheap strips to test your urine. You want it to be over 8. If not potassium helps. That's what I take to keep from going to the bathroom too much at night. But of course you want to see a specialist and get medicine.
I think taking a brief course of dopamine agonists is a great way to test for RLS. The short time I was on dopamine agonists they did indeed work for my RLS. They also relieved leg pain I would experience with or without the move to urge, which likely confirmed in my case the pain was a symptom of my RLS.
thank you. I agree that makes sense as a next step. However, curious to understand why everyone is suggesting trying the DA route first, rather than going straight for gabapentin or pregabapentin?
Maybe I can clarify what Sue Johnson is suggesting. DAs work very well right away, but become disastrous after a time. Gabapentin and pregabalin need some weeks to build up in your system before they become fully effective. So by trying .25mg of the DA Ropinirole, for example, for only a couple days, you will find out if your symptoms subside. A diagnostic tool. Please note that if you try a different DA as the diagnostic tool, the mg of a small dose would be different. Good luck.
Everyone is suggesting a SHORT trial of 3 to 6 days of a DA, purely to confirm whether you have RLS. DAs work very quickly, and if the bladder & pain stops, it confirms you have RLS.Then you STOP taking the DA because expert advice now is that DAs should NOT be prescribed for RLS because they all cause RLS to worsen severely AND they cause Impulse Control Disorder for up to 38%.
Gabapentinoids take 3 weeks at average dose to be effective.
hi Sue, that makes sense. I'll give this a shot to see what happens. To confirm, you are suggesting trying the DA route first, not going straight to (pre)gabapentin? I do believe there is a neurological component to whatever it is that I'm suffering from..
On the OAB, I have had by urine tested for infections (negative), and this has been going on for almost 10 years now so I guess would be unlikely to be explained by an infection alone?
Yes because as everyone says it works right away and therefore will tell you if it is RLS. As everyone also says gabapentin and pregabalin can take 3 weeks to work and then may need to be increased to really know if you have RLS. At this point you just need to know if you have RLS.
I spoke to a Neurologist in Hong Kong today. I went through my history and talked through the feedback from this forum. Whilst he hadn't come across too many cases of RLS (and none that were anything more than 'mild'), he was receptive to the idea that my condition could well be neurological and was happy to prescribe the DA medication for a few days, followed by Gabapentin or Pregabalin.
The problem is that ropinirole is no longer available in Hong Kong. As an alternative DA, he is suggesting I take 2mg of Requip (prolonged release). Any thoughts or feedback on this pls?
2 mg is a high dose like 8 times the .25 mg. Requip is ropinirole. Checking online pramipexole seems to be available in .125 dose non extended release in Hong Kong . This would be a better choice.
Hi Sue, I’ve checked a few places and have been unable to get hold of 0.25mg Ropinirole (they do have 2mg slow release). And for Pramipexole, while I was unable to get hold of 0.125mg tablets, I have managed to find 0.25mg. I’ve ordered these and hope to collect early next week.
Should I try to split the pill and take just a half at a time? (Once a day, 2hrs before sleep?) or is 0.25mg ok? And to confirm, I should just take this for 2 days? Any issues with taking with magnesium?
It has been suggested, but my sleep has got so bad over the years that the sight of those wires being attached to me will scare away any chance of getting to sleep before I get started! Separately, how would sleep apnea explain the pain in my knee/ leg, which only occurs at night?
I have a relative who just gets RLS in the stomach which is rare but it’s an example of RLS which doesn’t conform exactly to the standard definition of the legs being restless . They have to get up at night and move around until the sensation goes away. The DA test Sue mentions will be useful, and that is used rather than pregabalin/gabapentin because DA’s are more likely to be effective and to give conclusive result. It’s a shame they eventually make it worse.
Hi , my Rls is now completely under control with meds . When I was up most of the night I, like you had the urge to pass urine about every 30 mins although just a tiny trickle. I was also itchy all over my body and I used to experience low back pain / sciatica and a dull ache below my right knee which I had scanned. I used to spend all my time when I wasnt pacing ,kneeling on the floor against a sofa / bed and swayed my hips from side to side . Goodness only knows why but it seemed the right thing to do. Now my Rls has gone , my back and knee pain has totally disappeared. Strange but true . Good luck
It doesn't sound like RLS to me. My RLS feels a nerve activation sensation in my knees (Like when identity taps on a sensitive tooth). If I don't stretch my knees I get a tingling sensation on the left side my brain (I haven't heard anybody else mention that symptom). Does a hot water bottle or similar behind or between your knees help? Not that you really want to do that in the summer!
Hello Cappuchino_2 I’m sorry you are suffering I had RLS for well over 40 years and am not going to say much but I was on Dopamine Agonists and augmented so had to withdraw, I was on 6mg Ropinirole and it took me 13 months to withdraw with no medical help. It was extremely hard but I did it with perseverance, so all I would say is don’t even try them to see if it solves your problems, the reason being, they take a while to kick in and we being what we are, human, if it works then I would say that you could convince yourself that they won’t do any harm and continue taking DAs.
Of course it’s your decision but please read all you can about DAs before hand.
I disagree with HipHop on this. I understand where you are coming from, but a short trial is not going to lead to augmentation. As there is no blood test or any other test to confirm RLS, trying a DA for a couple days is maybe the only way to see if what you have is really RLS vs. some other neural issue. HipHop is correct in saying human nature might say you should continue on the DA if it works. But this is where you need to have read up on DAs and have the fortitude to stop!!
Hi 707twitcher. That’s fine we all have our own opinions formed through our personal experiences. I’m glad Buprenorphine has given you your life back, as it has mine, but only after a hell of a fight.
I think perhaps you do have a non-typical rls. It is of note that many of us experience our rls slightly differently, and I have seen post where RLS has been in other body parts. The fact that it moves and changes suggests the problem is not in the body part itself, but in the body’s (neurological) response.
I have a more typical form or rls but I too feel it in my bladder. I have always thought my rls may be triggered by my bladder’s pressure on my abdomen, almost other things, but your post provides an interesting insight as you suggest you are experiencing RLS symptoms in your bladder itself.
I think a dopamine agonist should work the very first night if you took one. However I would caution you that the temptation to take one the following night at so on could be overwhelming. But if you did take it one night, and it worked, then you could start gabapentin the next night.
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