RLS Hot Feet / Cramps

[Xhanthos]

Morning iv just joined this group

I have server RLS am on Ropinirole 21mg I take through the day yes they a lot some people say I'm on a to higher but it works for me untill I try to go to sleep I have Insomnia so never sleep ( my feet are so hot all the time does anyone else have this ) I have a fan on every night not much use

I also have bad constant Cramp I my Calves

Iv herd Magnesium helps any thoughts on that would love hear

Thanks

[Madlegs1]

Please research "Augmentation" and check out a paper on the subject by Buchfurer et al.Magnesium does help calm the body and mind in preparation for sleep, but can't compete against all the other stuff you throwing at it !😝

Good luck.

[Xhanthos in reply to Madlegs1]

Thanks I will do

[Hidden]

I'm stunned that any responsible doctor could prescribe you over 5 times the maximum dose of ropinirole.

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

I'm not surprised that you aren't sleeping, this will be a consequence of this massive dose.

You may be unknowingly already be suffering "augmentation", but if you aren't then it would seem inevitable that you will do.

Here' some information about this.

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

I suggest you discuss this with your doctor. You can refer him/he to these links.

As regards the hot feet/cramps, although it's possible that these may be related to your RLS, it's unlikely. There are other expalnations for these such as circulatory problems, neuropathy or electrolyte imbalance.

Don't assume that they are connected to your RLS. Again, discuss this with your doctor.

[Gafanas21]

Holy Moses. That is a huge dose and cannot be good for you. You need to see a neurologist ASAP and wean yourself off this. It will be hell but there’s no way you can continue on that dose

[RLSdaily]

I get the hot soles of my feet. I blame hormones. As I have always had RLS and not always the hot feet. I am female 49 years young. Hot feet can indicate high blood pressure so check with your doctor. Also the augmentation is a serious event. The other replies have touched on this. Good luck and I wish you sleep.

[Guitarpickin]

The only helpful thing I can speak about are the cramps. They are a frequent problem for me, too. Even though it is probably the last thing you want to do, get up and do some slow, thorough stretching of the lower extremities. Especially of the calves (but not only the calves). This can be done during the cramp to help it resolve, and definitely after the cramp passes. It will help reduce the frequency of recurrence during the night. Let me know if you need help finding good/effective calf stretches. Magnesium is a mildly helpful sleep aid, but I don’t think it really helps with cramps.

[Birdland]

Xhanthos, I definitely get the hot feet you speak of. No matter how cold it is I can never have more than a light sheet covering my feet. I am in U. S. and use something I got on Amazon called Cold Therapy Socks. They have gel packs inside and are kept in the freezer until needed. As for your dose of Ropinirole, I can also relate. I was on 8mg per night. I never took it during the day unless I had to go to the dentist or somewhere I has to sit. Forget going to a movie or taking a nap. Sitting for any length of time during the day became impossible. My RLS became so much worse than it had been when I first started taking Ropinirole 16 years earlier. Then 4 years ago I read about augmentation. That’s when my journey to get off this horrible drug started. For me it has been a very long journey which is not over yet. I am down to .5mg per night and still struggle. While I still have symptoms they are greatly reduced. I no longer experience RLS during the day anymore which is life changing. Being in Southern California I have been under Dr Buchfurer’s care. That is another story I won’t go into at this time. All the best to you going forward.

[ziggypiggy in reply to Birdland]

Do you still get hot feet most nights?

[Birdland in reply to ziggypiggy]

Yes, it’s 4 am and I have ice packs on my feet.

[ziggypiggy in reply to Birdland]

Bummer. The Cymbalta I take works wonders but it come with other unwanted side effects. Ugh. Medication is so complicated.

[Joolsg]

Mother of God! 21mg of ropinirole screams negligence. Whoever has allowed you to get to that high a dose should be struck off.Augmentation is inevitable at that dose and you'll be climbing the walls

Please, please read all you can about Augmentation and take back control.

Many of us have managed to get off Ropinirole and I will never touch another DA.

[Xhanthos in reply to Joolsg]

You can can take up to 24mg a day

,

[Heatherlss in reply to Xhanthos]

not for RLS. For RLS, the maximum is 4mg. Experts recommend not more than 2mg.

[Joolsg in reply to Xhanthos]

No you can’t. For RLS the recommended maximum set out in the leaflets is 4mg. However, top experts now recommend 1mg as the maximum because of the inevitable results of Augmentation. Even for Parkinson’s disease, 24mg is too high.

Please listen to the concerns raised as getting off 4mg nearly killed me. 24mg will be very difficult to get off.

[Hidden in reply to Xhanthos]

That is for Parkinon's Disease, NOT RLS

According the British National Formulary {BNF} (Official UK prescribing guide) the maximum dose for Parkinon's disease is 24mg.

However, according to the same source the maximum dose for RLS is 4mg only.

There is no mention of a dose for children

Children don't get Parkinson's disease and children are rarely diagnosed with RLS.

bnf.nice.org.uk/drug/ropini...

For a UK doctor to ignore the BNF is potentially negligent.

If you suffer harm because of this, e.g. augmentation, then you may benefit from contacting a medical negligence solicitor.

[Clarina123]

Hello, yes I get hot feet, whilst at home I spend most of the day with bare feet, even in the winter. I wear socks to go out, but can't wait to get them off. I never wear tights, the very thought of them gives me leg jumps! Good luck, you have my sympathies.

[ziggypiggy in reply to Clarina123]

Antidepressants are not great for RLS but Cymbalta has been a godsend for my burning feet. I take a strong enough opioid dosage that I can counteract any of its RLS effects.Burning feet makes it almost impossible to sleep. I've tried all the meds but SSNIs work wonders.

[Xhanthos]

Yes I'm the same thanks

[ziggypiggy]

Yep. Hot feet as well. Went through all the nerve tests and everything came out fine. Been dealing with hot feet and rls for decade. Only thing I can do for me feet is apply lotion repeatedly with a small fan blowing on them until I do fall asleep. Of course alcohol is a no no for my rls and hot feet as are salty meals in the evening.

[Hidden]

Please look at this link and listen to Dr Early talk about RLS and Augmentation and high doses. hopkinsmedicine.org/neurolo...