Do I really have RLS?: Hi everyone, I... - Restless Legs Syn...

Restless Legs Syndrome

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Do I really have RLS?

Beachmountain profile image
16 Replies

Hi everyone,

I found this community when googling Ropinerole withdrawal. I have been on. 25 mg for a short time, about 2 months. My symptoms were squiggly feelings in my legs at night and frequent leg cramps. I am not sure the diagnosis is accurate, and find myself feeling in a fog since taking Ropinerole. The cramps subsided but I still get the squiggly feeling.

My understanding is that RLS is not cramps and does not involve pain. I do not twitch that I know of. Do you think it is RLS?

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Beachmountain profile image
Beachmountain
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16 Replies
YodaDog profile image
YodaDog

I do get a mild pain or ache in one or more of my knees sometimes along with my usual daily RLS symptoms (intense crawling, creeping sensations). RLS typically does occur at night or late afternoon and is relieved immediately by getting up and walking. The horrible sensations should stop as soon as you start moving. Also if the ropinirole did initially prove successful in eliminating the horrible sensations then that will help to confirm that you do indeed suffer from the dreaded RLS.

Beachmountain profile image
Beachmountain in reply to YodaDog

Thanks! The crawling sensations are not all that bothersome, it is the muscle spasms. It just happened so fresh in my mind. My foot and leg went rigid and hurt like heck. When I stood up, it was hard to set my foot down but pressing it into the floor did ease the spasm. Definitely not mild!

rellwill profile image
rellwill

I don't get cramps but pain is definitely present, from a dull ache throughout my legs to a sharp stabbing with the violent jerks. The squiggly feeling you say sounds like my families version of jumpy legs and fits RLS. .25mg of ropinorole is starting dose to get you used to the drug, therapeutic range (from my GP and chemist) is 2-3mg. I'd follow up with your dr. At this dose I had no relief at all

Beachmountain profile image
Beachmountain in reply to rellwill

Thanks, Rellwill! Here I am thinking I need to go off the ropinerole and you are thinking it isn't enough lol. I will think about it some more.

rellwill profile image
rellwill in reply to Beachmountain

It's not a nice drug I can understand wanting to come off it. After three months I still get nausea (sometimes vomiting) For about two hours not long after taking it. But I prefer the side effects rather than the six-eight hours of hell from my legs. Medication is a very personal decision

m1946 profile image
m1946 in reply to rellwill

Have you studied the condition of Augmentation which occurs when the Ropinirole stops working. There are many cases on this site where the withdrawal effects caused suicidal thoughts! It is recommended NOT to increase dosage of this DA drug

Beachmountain profile image
Beachmountain in reply to m1946

I am convinced! Thanks!

Beachmountain profile image
Beachmountain in reply to rellwill

Man, it sounds like being between a rock and a hard place! It seems as though my issue is minor and I may be creating a bigger one by staying on Ropinerole. Thank you for weighing in!

RLSofManyYears profile image
RLSofManyYears

Here are two web sites with information on RLS (both in the UK):

rls-uk.org/what-is-rls

cks.nice.org.uk/topics/rest...

They should help you understand whether what you are experiencing is RLS or not.

In terms of using Ropinirole (or Pramipexole) then the advice is not to use dopamine agonists at all. You start to need more and more and then you hit the maximum dose and it just gets worse (look for Augmentation). Coming off them is very rough as well. Look at posts by Joolsg and Manerva for further advice on dopamine agonists).

DicCarlson profile image
DicCarlson

My severe RLS was ASSOCIATED with muscle cramps in my legs. I say associated because they are related but not to each other. Perhaps a Magnesium deficiency (either because of malabsorbtion or other reasons) can cause muscle cramps and also contribute to RLS. Start a high quality Mg supplement. I just started with Magtein and my leg cramps have mostly gone away.

RLS for me was an uncontrollable urge to move my legs - I had to get up and walk about. You can be as tired as can be, as sleepy as all get out - but no sleep - I HAD to get up. Eventually the only sleep I got was by raising my legs to almost vertical with couch cushions - maybe 2 hours total.

I would agree to reconsider even using the Ropinirole at all. I resisted all meds due to side effects and augmentation.

Beachmountain profile image
Beachmountain in reply to DicCarlson

Thank you, this is very helpful. I will try the magnesium and lay off the Ropinerole. Do I need to ease off it if only on it for 2 months at the lowest dosage?

The princi[pal defining characteristic of RLS is the "urge to move". Whatever other symptoms you get. if you don't get this, then you don't have RLS.

You can check your symptoms against the RLS diagnostic criteria. If your symptoms match ALL the criteria then you probably have RLS.

Here is a link to the criteria.

irlssg.org/diagnostic-criteria

Beachmountain profile image
Beachmountain in reply to

Thank you, Manerva. I do have to move in order to stretch out the muscle. Not sure if that is considered an urge to move. Sometimes I get dizzy and perspire. I read the criteria and am leaning towards very mild RLS. It does not impact y life all that much.

in reply to Beachmountain

That doesn't sound like the urge to move. The urge is a thing in itself.

In addition, taking a dopamine agonist medicine, such as ropinirole is usually a good indicator of whether you have RLS or not.

As Involuntarydancer says, if you have RLS it should have an immediate impact.

As well as the urge to move also note criteria 2, 3, 4 and 5.

Dizziness and perspiration have no connection with RLS.

If you're worried by your symptoms, please see a doctor.

If would be more usual for mild rls to respond to ropinerole almost immediately (even a low dose of ropinerole - although it wouldn’t be long before more would be required) . Most sufferers describe their first few days on that drug as being like a miracle. Suddenly they are able to sleep peacefully without the awful twitching. Although it’s not a high dose of ropinerole I would have expected some impact, at least initially. If ropinerole makes no difference to the ‘squiggly’ feeling, it may be that it’s not rls. Either way I think you are doing the right thing to get off that drug asap. Long term it can do a lot of irreparable damage.

Beachmountain profile image
Beachmountain

Well, the muscle spasms stopped completely and the squiggly feelings subsided for a while. I did not take a pill two nights ago and got a cramp last night. I am so confused.

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