It started in March just with pins and needles in my left leg, then noticed strange pulling feelings in my thighs, mainly first thing in the morning. My ferritin is 50 which doc said is normal.
She prescribed ropirimole but it scares me as I had rumunitative ocd in my 20s (now 56) and am terrified of the idea of ICD. I also had depression back then so the pregabalin scares me too. I have a nhs neurology appointment in September but have booked a private one this Thursday as the anxiety is killing me. I didn't get the ropirinole but the prescription is still there.
My symptoms are worse first thing in the morning and don't really go during the day, part of me wonders if it's just all anxiety?
I was wondering whether anyone has tried the positional release therapy from an osteopath?
Also, any advice for when I see the neurologist? I just don't know where to start...
The symptoms you describe don’t sound like classic rls to me. It is unusual for rls symptoms to start first thing in the morning especially in the early stages. Typically it comes on at night, very
often shortly after the sufferer goes to sleep. The most significant characterization is an overwhelming urge to move the legs which results from a mounting sensation of creepey crawling or pain in the legs which builds to a crescendo and is only relieved (very temporarily) by moving the leg. The sensation then occurs all over again a few seconds later.
If you try the ropinerole and it affords relief this could be an indication that it is rls as ropinerole won’t help against most of the other related conditions such as neuropathy/fibromyalgia etc but even then there is a possibility of a placebo effect. It is the urge to move and the very temporary relief it affords that is the ground rock of rls.
In any event you are wise to be cautious about taking ropinerole long term - even more so given your history. Although it can be very helpful initially, it results in some pretty terrible outcomes ultimately and it is better to seek a different therapy.
Thanks so much for taking the time to reply. Yes my gp said it wasn't typical, which is why I was surprised when she prescribed the ropinerole straight away. I don't get the urge to get up but do want to keep tensing and relaxing rhe leg muscles.
Good luck with the neurologist. I hope he/she is brilliant but it may be worth being aware that there is a sizable number of neurologists who are surprisingly ignorant about rls and its treatments.
Rls causes stress but being stessed wont help.Involuntarydancer gave you a very good response.Just follow it.Good luck.A fellow sufferer.
i agree it doesnt sound like RLS to me either. You have to have that urge to move for it to be RLS. Your doctor should KNOW what the criteria for RLS is to be diagnosed. And as has been said, its usually for it to happen when trying to relax or sleep, RLS stops you from sleeping. Most RLSers have to pace through the night, if their meds fail them.
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Thank you for taking the time to reply. It means a lot. Yes it gets worse when I'm sitting or lying down but I suspect that is partly because I am focussing on it more than. Will see what the consultant says.
Besr wishes everyone here, a community of brave souls x
Hi yes as in impulse control disorder, I was concerned that having had obsessive thinking previously it may predispose me to the side effects more than the general population. just and anxious thought really!
Nottsali. you do not want to take a dopamine agonist if you have OCD. It could make it much worse.
For now, as your symptoms seem limited to the day, I would take the step of seeing a chiropractor or osteopath to check your lower spine.
The pins and needles and the odd sensations in the legs can arise from problems in the lumbar spine and/or the sacroiliac joint. Great pain can also arise from those sources.
You really do not want to take drugs for RLS if you do not have RLS. There is no free lunch.
And ask the chiropractor/osteopath/physiotherapist for stretching exercises specific to any difficulties they may find.
What did your doctor mean when s/he said «it wasn’t typical»? Is that supposed to mean it wasn’t typical RLS? I’m wondering about his diagnosis. You hear of people being misdiagnosed all the time, which is tragic. If I were you, I’d challenge your doctor’s diagnosis. If you are on Ropirole for another reason, then that is something else. But if you are on this med for your «atypical RLS» (never heard of this, btw), I think you need to take some sort of action. I hate for you to be on a medicine (that can carry seriously side effects like all meds) if you don’t need it.
I am so glad you are seeing a neurologist since they are ones you go to for a diagnosis of RLS. They know what questions to ask in order to properly diagnose you (RLS is diagnosed by you describing your symptoms, and familial hisory of it is checked as well since it can be genetic). One inportant piece of advice, though: tell you’re neurologist about your previous OCD since some RLS meds. can have this as a side effect! Also mention the depression.
Good luck; you are on the right track to get this sorted out!
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Thank you so much for your kind reply - I was horrified at the ease with which she handed me the prescription without any discussion of the side effects. Fortunately I had done some research on here beforehand and I didn't actually go and get the meds. I have a friend who is helped hugely by rop and I know it works for some.
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Good for you for going in armed with that info.! She handed it over that easily, huh? What a shame. I had a psychiatrist in the States once who did that. She might as well have said «here, this should fix you. Now go away». The one I have now is Heavenly compared to her!
I have a feeling that your neurologist will be much more cautious.
If you want to feel prepared when you see the doctor you may find it helpful to look at the RLS-UK website at rls-uk.org.
Have you looked into diet and lifestyle? Many of us have triggers that set off our RLS that we work out by trial and error.
Hope the appointment goes well!
Hi there,
I don't think it sounds like RLS either. In RLS there is a distinct and irresistible urge to move when the symptoms are present and your timing is virtually the opposite of RLS. If you don't get symptoms at night I honestly would not start taking ropinorole at this stage.
With the pins and needles you might have a peripheral neuropathy or some other form of neurology. The neurologist is the way to go. I my opinion ( and I was a Dr and have both RLS and peripheral neuropathy ) you need much fuller investigation before starting any treatment, especially as treatments have side effects.
Also for RLS a Ferritin of 50 is not normal, it is low.
I would try to hang on till you have been properly investigated.
in reply to
Thank you
Good morning
I have had symptoms for over 2 years now and not able to take any medication as they all make me really very ill.
It started with an odd feeling in one foot, it affects my leg as I get alot of cramp which tightens my calf muscles, sort of referred pain.
Once I settle down in bed, in 30 mins to 1 hour the symtoms virtually go, my symptoms are all day, every day. Many experienced folk on this site think its not RLS but if not - what is it?
I have had an MRI scan for my head and down to my waist but do not see the neurologist till the end of August. Am assuming that as I have not been contacted they haven't found anything frightening. But as you say, it's the waiting that's difficult.
I recently stopped taking ropinirole and am now feeling quite a bit better- mentally. I was experiencing some compulsive things like shopping ,drinking -things that I didn't normally do in my life until I started taking ropinirole. I have to add that I was also prescribed trokendi . That and the ropinirole we're a very bad mix for me and I had to stop both cold turkey because I got so sick. I feel like I am finally coming out of a very bad phase of feeling like I was just in a fog. I it was very frightening for me and for my husband because I felt like a stranger to both of us.
Well done for getting off ropinerole, that is a tough job. I too suffered from the compulsions when on a dopamine agonist med. They stopped as soon as I discontinued the drug. I hope you manage to find something to control your legs now that you are without that medication.
Some peope here have talked about a 'typical' RLS. I agree with the textbook 'tests' but untypical does NOT necessarily mean you don't have RLS. I started symptoms in my lower right leg but after 4 months it spread to my full right leg, right arm and my backbone. It is only unilateral and is 24/7 - causing more trouble for me in the day than night as I can't sit down for more than 5 minutes before getting up but I don't need to move my legs if I'm horizontal so although it is uncomfortable I can go to sleep OK. I saw a neurologist who after a full half-hour consultation told me it was restless leg syndrome though he wanted to confirm nothing else was wrong by having a brain scan. (still awaiting the brain scan to confirm nothing else is involved - long wait - as it is on the NHS). I heard of one man who they thought was having a heat attack but after the ambulance took him they realised his heart was OK and he was having severe restless leg symptoms for the very first time through his spine ( causing strong symptoms in his chest). I had some flutters in my spine yesterday in bed but didn't worry as I knew what it must be . Some of us are not very typical at all it seems.
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scared appreciate any help
Scared of diagnosis/lack of
scared!
Severe RLS and scared. 
RLS diagnosed - but is it correct>
