Hi. Just seen this group as , yet again, I’m having to sleep on the sofa as it drives my misses mad. I’ve had RLS for as long as i can remember and I’m absolutely sick of it. I’ve tried to explain to her how it feels if you don’t move your legs and that vile sensation if someone tries to stop you by holding your legs down with their legs. I also suffer and have since a baby with RMD (rhythmic movement disorder) where not only do I have to fidget my legs but I have to lay on my front and bang my foot against the bed in a rhythm to get me to sleep, Ive been referred to a neurologist to see what’s going on. I feel for anyone that suffers with this as it is vile. Only thing that stops me is heavy sleep pills like clonozepam, but this makes me feel like a zombie the next day. CANT WIN, anyway just thought I’d post on here with fellow sufferers. If anyone can suggest any clues as to how to stop.... please advise!!
Andy.
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Topmong1
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Hi Topmong, really sorry to hear the awful discomfort you're going through. There are some very knowledgeable, helpful and empathetic members on here so you should get some help good replies. However, for members to offer you the best (non-professional and non-medical (i.e. GP)) advice it would be really helpful if you could tell us all what you've tried so far esp medicines, supplements and eliminating triggers such as caffeine, alcohol etc.
Hi Andy,
it's sounds very much like you're on the right track seeing a neurologist.
Presuming that the neurologist confirms you have RLS, it sounds as if you have, then as it also sounds severe, there are effective medical treatments for it.
You and your missus will be relieved to hear that.
Hopefully, between them, your primary doctor and neurologist will be able to determine if you have "idiopathic" RLS or "secondary" RLS.
Secondary RLS is caused by some other underlying condition, e.g. an overactive thyroid gland.
Treatment for idiopathic RLS and secondary may be different.
In some cases treating the underlying condition for secondary RLS relieves the RLS. However not all cases of secondary RLS can be treated this way because the underlying conditions can't be treated e.g. neuropathy due to diabetes. In that case it has to be treated as idiopathic RLS.
There are effective medications for idiopathic RLS. That's the good news.
It might benefit you to be forwarned, there is some not so good news too. There is quite a lot of information you could have which will help guide you through the complex minefield that is RLS treatment.
Perhaps the first thing it might help you to know is that doctors generally, including neurologists aren't always familiar with RLS and up to date treatments. You need to find out as much as you can for yourself.
My experience of the neurologist who diagnosed my idiopathic RLS was he prescribed me a medication without any discussion of anything else I could do and without any warning of the consequences of taking it.
A "good" doctor, for any disease, would explain all the options to you, their relative benefits and drawbacks and give you a choice.
In the UK, at least, they are supposed to do that. It's the law of "informed consent" which applies to ALL treatments. This doesn't always require a signed consent form, "implicit" consent only requires that you comply with their prescription. I presume there are similar laws in other countries.
In the case of RLS there are TWO main classes of medications that are used as "first line" treatments for RLS. First line meaning the first things to be tried before anything else.
Both have side effects and longer term consequences.
The 2 classes are Dopamine Agonists (DAs) and Alpha 2 Delta Ligands (A2Ds).
UK national guidelines on the.use of DAs for RLS explicitly state that patients should be aware of the long term risks which are
Loss of efficacy
Augmentation
Impulse Control Disorder
These are long term and the (seductive) beauty of DAs are they are immediately very effective in treating RLS. However, there is no cure for RLS. When I was first prescribed a DA, Pramipexole, I was told I would probably have to take it for life. He should have said have.to take "something". The chances of taking a DA effectively for more than about 8 years are quite low because of the above 3. It might be a good 8 years, however and there are things you can do to reduce the risks.
If you do accept a prescription of a DA then I suggest you read up on this site about risk reduction for DAs.
I can only say, that if I was to be only now diagnosed with RLS, knowing what I now know I would have serious doubts about taking a DA and would try an A2D first.
The other thing you need to consider is the non medical remedies. These partly consist of correcting any deficiencies you might have e.g. vitamins B12 and D, magnesium and potassium. It would be helpful if you get blood tests for the vitamins and potassium. There is no simple test for magnesium deficiency.
It's fairly safe to take supplements for vits B12 and D and msgnesium.
Iron deficiency is a big factor in RLS, but not blood deficiency, it is brain iron deficiency. Doctors do often test your ferritin level because of this, but what they also do is say if ferritin is "normal" then it's OK. For RLS this is not so, you need to know the number. For ferritin 20 mcg/L would be normal, but anything below 50 mcg/L actually bad for RLS and anything below 100 not good.
In the meantime, waiting times fir a neurologist can be lengthy. It might be helpful you to know about triggers, i.e. things that can make RLS worse. It helps to avoid these things.
Not all, but including -
Alcohol, some antidepressants, some antihistamines, some antacids, some anti-sickness medications, beta blockers, statins, melatonin.etc
For some people caffeine is a trigger whereas for others, it helps.ke
If you liven in the UK, here is a link to the UK national guidelines on the management of RLS. Doctors take heed!
Pretty comprehensive, I would just add potassium blood levels don’t necessarily reflect any deficiency inside your cells, where 95% of it is located. Supplements only give you 2%of your daily needs so look at taking a high potassium diet. A baked potato in its skin gives you 20% of your 3.5- 4.7g needs.
You might also add See a Sleep Disorder specialist.
No don’t mind, I thought it better to link my comments to yours as posting them separately puts them well away from yours. I’m sure Topmong will read the thread from time to time. Hadn’t thought of notifications!
Hi Topmong1 - Another remedy I have found very helpful is cannabis. You can try the non psychoactive CBD oil and if it is legal a mix of THC/CBD might work best for you. I find it is very calming for my legs and helps me to get sleep. It does not make me feel zombified in the morning - in fact I feel pleasantly calm. If you can get it prescribed by a doctor that would be good - depending where in the world you live.
See my post from a few days ago on the natural remedies that have not cured my rls but they work some nights, otherwise I would be on a pharmaceutical that my doctor prescribed but which I never took once I read the contra-indications.
Briefly, in case you can't find it - mag citrate + b6, Aesculus horse chestnut drops from A.Vogel 1200mg CBD spray from Vitality (very expensive but helping me sleep, but still have to get up every 2 or 3 hours due to prostate problems and osteo-arthritis pains...If rls comes on before bedtime I also have my wife fit my Restiffic foot clamps, which again will sometimes work.
I think we need much more interaction on the naturals as so many on the forum seem not to have considered or tried them.
By the way, I also have had to cut down my sodium intake as there is way too much in our foods, often hidden.
Hope this helps to get more sufferers to try these remedies although they can be very expensive but rls is sometimes so bad you feel you would pay anything to get relief and a decent night's sleep. Misunderstanding from non-sufferers is also a trial, especially doctors who pat you on the head and send you home with a dangerous chemical with side effects like delusions (read the small print).
There is hope, I’ve had severe RLS for years and struggled. My neurologist confirmed and diagnosed and started me on medication. After a few attempts I’ve now found one that compared to how they were it feels like they are barely even there and I sleep much better. I still have bad nights but I can increase the medication when this happens and I always take a higher dose in summer as the heat makes them worse.
The medication has honestly changed my sleep pattern completely.
Have had RLS for 25 years. Have recently found that compression socks help in relaxing the muscles in the legs and feet, giving some relief to the RLS symptoms. I also recently got orthotics for my feet as I have a high arch and hammer toes. They have also helped make my feet more comfortable. I have found that aching feet seem to make my RLS symptoms worse. The orthotics have helped my RLS a bit.
Hi Andy, I know how you feel! I've recently seen a Neurologist for my RLS and after a series of tests I've been prescribed Pregabalin 50 mg & Ropinirole 2mg, I also take a couple of co-dydramol tablets each night.
My RSL has nearly disappeared with this medication. I also can also take a further 25mg of Pregabalin if the symptoms persist.
The neurologist has told my doctor to increase the Pregabalin up to 300mg and reduce the Ropinirole over time if required.
Pretty comprehensive, I would just add potassium blood levels don’t necessarily reflect any deficiency inside your cells, where 95% of it is located. Supplements only give you 2%of your daily needs so look at taking a high potassium diet. A baked potato in its skin gives you 20% of your 3.5- 4.7g needs.
You might also add See a Sleep Disorder specialist.
Not to be in appropriate but have you tried to orgasm before falling asleep? I’ve suffered from RLS for years and just recently found if I reach n orgasm by masturbating I fall asleep with in minutes.The release of dopamine to your brain calms the symptoms.. I googled it and it’s an actual study , people find it helps.Just a suggestion , good luck
We are with you. It's a terrible disease what we have. And of course since they can't physically see it they will never get it. I also have had this since the earliest memory I was six but it wasn't the first time in that memory. I recently started Horizant and for me its been a miracle. I also was on Ativan for 14 years and that kept it at bay most of the time but not all the time. It's the same class of drug as clonazepam. After I went off ativan (2016) which was the worst experience of my life ( ben
zo withdrawal is hell) the rls was also at it's worse in my life and I was up every night pretty much all night until recently. So for now I am getting some rest which is long overdue. Not sure where you are from and if they have it there or if you have already given it a try. Its Horizant extended release gabapentin enacarbil. Good luck . Your not alone
Welcome to my world Andy. Your not alone and I feel your anxiety and frustration like I know you. There’s no stopping this bitch that crawled into my body to wreak havoc on me for the rest of my life. Sure I’m over it, sure I’ve had enough, sure it does my head in, sure I’m so done with it. But it’s not!!
You would think that with medical science so far advanced now a days that there would be something out there that would put an end to crap that a lot of us are subjected to and suffer with everyday - RLS (RESTLESS LEG SYNDROME)
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