rigid body

[Kingfisher65]

does anybody go totally rigid? My mum says she starts with shaking and then her legs goes rigid and toes point even so much that her legs raise, she only seems to get respite from totally being on the go. She’s not seeing her neurologist until September!

[Joolsg]

Yes. When my RLS was very severe on Ropinirole.What medications is your mum taking. List them all because many actually trigger RLS. Once you tell us her medications, we can guide you.

Start by reading RLS-UK website.

It sets out treatment, medications to avoid and blood tests she will need.

Raising brain iron through iron pills or an iron infusion can resolve many cases.

[SueJohnson]

Since she is on ropinirole as we advised before she needs to come off it. She does not need to wait to see her neurologist to start coming off it. Also most neurologists are not up to date on RLS and won't be helpful. She probably needs to see one privately. If you tell us where you live in the UK, we might be able to give you the name of a knowledgeable one.

[Joolsg]

I've just seen that you haven't answered anyone's replies.Your mum will never be free from RLS until you tell her what everyone has advised.

[SueJohnson in reply to Joolsg]

Unfortunately that happens so often and it is so frustrating when we are trying to help.

[Crazy-Leggs]

Yes, when I have just tried to reduce my dose of ropinirole by .25 mg I have what almost feels like a seizure. (I only take 1 and 1/2 mg total.) My body tenses, clenches up ,holds for about 20 seconds the releases for about 30 seconds. I shake all over, bust into a sweat and can't even think straight. This can go on for hours! I've wound up in the emergency room twice because of it. I'm afraid im going to have a stroke or a heart attack. Thst simply cannot be good. They gave me a ton of drugs to knock me out, admitted me for the night. The next day the neurology Team came in and said they had no idea what caused it and sent me home.I've not attempted to reduce my dose in quite a few years but now augmentation has me at that point. I had a mild stroke 7 years ago after my husband passed suddenly and a not bad heart attack and had to have a stent placed 3 years ago.

I'm hyper reactive and alergic to a ton of stuff. I can't believe they put me on this crap to begin with 12 years ago! I'm frustrated and mad as hell over all of it. I seem to know more than any of the damn doctors. Going to try and locate a doctor in St. Louis Mo that I believe SueJohnson suggested. I feel helpless at times but I'm tough🙃

[SueJohnson in reply to Crazy-Leggs]

Since .25 was too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon for around $11 and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

[Crazy-Leggs in reply to SueJohnson]

Thanks Sue, have you ever heard of these kinds of symptoms? It's quite scary. I think panic takes ahold pretty fast. Especially living alone and not having a doctor that can advise or help me at this time.

[SueJohnson in reply to Crazy-Leggs]

It's rather an extreme reaction but definitely possible from the withdrawal. You will want to reduce by a very tiny amount to start, because just the thought of that will make you anxious and that will make it more likely to happen. When it doesn't because it is a tiny amount and when you continue with a tiny amount for a few times and then increase it slightly you will gain more confidence and the anxiety will go away.