I’ve suffered with Restless Legs Syndrome all my life & have been seen by top neurologists in London & Yorkshire & have had nerve conduction tests done.
I’ve lost count of the different types of medication I’ve tried but nothing helps & I spend each night crying with the pain & discomfort & am exhausted all the time.
I had a very rare illness as a small child & am very lucky to have survived it was called Hemorrhagic Measles & I was put in total isolation & my condition now is so complicated & seems to have baffled all the doctors but what I can’t get to the bottom of is the mention of Post Polio Syndrome as I never had Polio.
Welcome to the site. I’m sorry you are having such a bad time. I suspect you have been put on dopamine agonists ( Ropinirole or pramipexole) and you are possibly suffering Augmentation. There is a pinned post at the top of this page which explains augmentation and there is also a video about it on the main RLS UK website.
We need to know ALL the meds you are currently taking, including OTC meds like anti histamines and cough meds and we will then be able to point you in the right direction.
I’m currently on Clonazepam half a tablet at night & CoCodamol for back pain as I have Arthritis in both top & bottom of my spine I get Migraines from time to time & take Sumatriptan as & when & I do suffer from insect bites & sometimes take a anti histamine.
I can’t find any information on whether Sumatripan worsens RLS, but maybe someone else will comment on that.
Most anti histamines and anti depressants make RLS worse. Claritin is a safe anti histamine.
Clonazepam works well for RLS but if you are now having nightly symptoms, it may have stopped working for you.
I suggest you get a blood test and ensure serum ferritin is above 100 and serum iron is above 60. The latest research from the USA shows really positive results from raising levels. However, if your levels are below these figures, it can take a long time to raise by taking oral supplements- in the USA it’s much easier to get IV iron infusions to raise levels fast.
In the meantime- you’re suffering and not getting sleep so ask your doctor to prescribe other meds which will help.
There are 4 classes of meds for RLS. Dopamine agonists, benzodiazepines, alpha2delta ligands and opioids.
Clonazepam is a benzo and that has clearly stopped working so ask for pregabalin or Gabapentin ( alpha2delta ligands). They take about 3 weeks to become effective.
Spend a couple of hours reading the last few weeks’ posts and the replies and you will see a lot of suggestions that may help, like magnesium, looking out for dietary triggers etc.
You will find a wealth of knowledge and experience on here, as most people have had to educate themselves about the condition because most doctors know very little about it.
I took clonazepam for years before being switched to ropinerole. I found that I had to take ‘a vacation’ from clonazepam every several months. During these times ( almost 30 years ago) there wasn’t much else available. The dr usually prescribed Sinemet (carbadopa lepedopa) or a different Parkinson’s med. They usually didn’ t work so I tried to get back on clonazepam ASAP.
I was originally on Ropinirole for many years so much so it was having no effect & I’ve tried virtually everything else with Clonazepam being the most recent & right now I may as well be eating smarties for all the good it’s doing !!! Due for telephone consultation with GP in a few weeks
Boy, I'm sorry for your pain. I am back on ropinerole after augmenting on Mirapex. When this goes, as it will, I don't know what I'm going to do. I am trying to find a neurologist that will prescribe methadone but I am not optimistic.
That’s a very tall order & I really don’t think you will find anyone who would prescribe that for you . Do you think there’s ever gonna be a chance that Cannabis will be licensed in this country & could it help people like us who to some extent “suffer in silence “
At the entrance to a public convince in my local shopping mall is a disabled sign which says
“Not every disability is visible “
How true that is & whoever wrote that has my greatest respect.
Yes I do. I heard - but have not researched - that one federal agency has approved it. I know the VA is looking at it - that’s the one I need. I know Minnesota has licensed physicians as well as Oregon , Colorado, California
Hello, I'm so sorry you are suffering so much. I have RLS also and it is an ongoing battle. Iron infusions have helped me and life is better now although I am still trying to get off ropinirole . I was reading about Post Polio Syndrom. You can only get it if you have had polio, however, there are other conditions that mimic it. And guess what ? Depression is associated with fatigue and can be misinterpreted as PPS. That is straight from the Mayo Clinic's web site.. There are also other conditions that mimic PPS as well. What happens is nerve terminals in the spinal cord which connect to motor units start to degenerate. You might want to do a little research and see what you find and then ask your Doctors what they think. Good luck to you. Pam
Unfortnately, it seems that sometimes if doctors can't full explain a nerve condition that has RLS like symptoms, they try to pin the RLS label on them. They should try to eliminate all other explanations for your RLS-like symptoms, before confirming the diagnosis.
It does sound as if some attempt to do this has been made in your case, i.e. the nerve conduction tests. If these had found a nerve conduction problem, then this would NOT be due to RLS. If you have RLS, alone, with no other nerve problem, these tests would have not found anything.
I also see you mention Post Polio Syndrome.
Strictly speaking a "Syndrome" is not a condition. It's a group of signs and symptoms which commonly occur together. RLS is a group of symptoms that always occur together, but there are different causes, underlying conditions for it. Idiopathic RLS is not the only form of it. Similarly Jaundice is syndrome and there are many conditions that can cause it.
By Post Polio Syndrome then, it may mean that you have a group of signs and symptoms that are usually associated with polio, although you haven't had it.
If you've had the following -
Muscle and joint weakness and pain
Easily fatigued and exhausted
Sleep related breathing disorders
Then you have some of the PP syndrome features.
If you've tried all the usual medications for RLS, it depends on what they were, how long you tried them for and if none of them ever worked.
Dopamine Agonists are usually particularly effective for RLS, at least, to start with.
Putting this all together there is a possibility that you don't have RLS.
Read the criteria (linked) carefully. You have to fit AlL the criteria for tge diagnosis.
in reply to
Thank you what you have said makes a lot of sense.
in reply to
If you don't have RLS though, you DO have something.
For my needs I use Balneum Cream & put some on before I go to bed .Sometimes Ive had to put some on during the middle part of the evening (between 8-9pm ish) because I can feel the start of the pain A s soon as Ive put some on Im comfortable again
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