Weird feet and RLS: Hi all fellow... - Restless Legs Syn...

Restless Legs Syndrome

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Weird feet and RLS

BTABKWJ4561 profile image
8 Replies

Hi all fellow sufferers

I do get RLS quite bad. I am 77. I take Premiprexole 5 tablets daily 0.088 which work reasonably well. I sleep ok at night but it comes on about 6pm until I go to bed when it amazingly stops normally. But one thing I get from about 7 years ago which seemed to start with weird feeling feet which carried on to be RLS. I still am getting the weird feeling in my feet, and also I get extremely dry and cracked feet which are red. This always start about the same time of the day as the RLS. I wondered if it was anything to do with my circulation. The doctor gave me some cream with steroids in it which I’ve just finished after a fortnight which didn’t help at all. I am actually going to SEE my GP this week so he can actually see my feet. I was wondering if other people amongst you are getting or have had the same problem with their feet and RLS.

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SueJohnson profile image
SueJohnson

I'm afraid I can't help you with your feet but I am concerned you are on Pramipexole. You say you take 5 tablets daily. Do you take them all at one time or throughout the day?

Joolsg profile image
Joolsg

You were on 6mg Ropinirole which is way over recommended max dose & you're now on an extremely high dose of Pramipexole.As RLS is starting at 6pm, you are clearly showing signs of augmentation.

Print off the Mayo algorithm, show to your GP and ask for a scheduled reduction plan to get you safely off Pramipexole and onto alternative meds like pregabalin, gabapentin or low dose opioids.

I can't comment on the dry, cracked feet as I never experienced that on dopaminergic drugs and it may be caused by another condition.

Sadly, your GP will know nothing about RLS so show him/her the algorithm, the info on augmentation and this update from the UK leading GP training company.

Dopamine agonists are no longer prescribed as first line treatment because the risk of Augmentation of symptoms is just too high and withdrawal is hellish.

If you want relief from the increased RLS and the earlier start, your only solution is to reduce Pramipexole very, very slowly by half a 0.088 pill every 2 to 3 weeks with the help of a low dose opioid.

You should ask for full panel bloods and ensure serum ferritin is above 100, preferably 250 as this can alleviate some of the increased RLS and slightly reduce withdrawal symptoms.

mayoclinicproceedings.org/a...

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

nbmedical.com/kiss/kiss-res...

Munroist profile image
Munroist

Cracked feet can be a side effect of athletes foot or simply just dryer, less flexible skin as you age and possibly walk less. There are a few good heavy duty moisturisers available like Scholl cracked heel repair or O'Keefes hand repair which should make a difference in a week or so of daily applications and once the skin is flexible the cracks will normally heal. If it's athletes foot then there are quiet few anti-fungal creams and talcs available and the creams will also moisturise.

willowland profile image
willowland

I rub aqueous cream in my feet at intervals throughout the day everytime I feel they are uncomfortable.

Jelbea profile image
Jelbea

Because of the "weird" feeling it might be neuropathy. I don't think athlete's foot would cause a weird feeling. Just a thought.

ziggypiggy profile image
ziggypiggy in reply to Jelbea

That's what I was thinking as I experienced dry hot feet forever. Low dose Cymbalta has relieved nearly all that. Even though it's on the RLS naughty list, it's well worth it and I'm lucky my opiods cover any increase I would normally experience.

Deesee profile image
Deesee

It’s possible that the weird feet feeling is neuropathy. I started out with neuropathy 13 years ago, and was later diagnosed with RLS when I went to a neurologist for the neuropathy. My feet often get red and hot at night. Some toes can also hurt and there is a pronounced, tingly feeling present. It’s different from some RLS feelings which can tend to be more spasmodic while this feet feeling is constant. Seems like the neuropathy and RLS sensations get all mixed up, but I’m pretty sure the hot, buzzy, tingling feet are my neuropathy. The feeling travels up my leg too, but the hot, red part is just feet. I rub them while I’m watching tv. If there really bothersome, I take a hot shower then put Icyhot on them, or sometimes Vicks, which might help with dryness as Vicks is petroleum based. I take Gabapentin both for the painful neuropathic feet and for RLS. The feet used to hurt more during the day, but now mostly in the evening.

SueJohnson profile image
SueJohnson

I agree with everything Joolsg says. In addition: Start gabapentin at least 3 weeks before you are off Pramipexole since it takes at least 3 weeks to be effective, although it won't help much until you are off Pramipexole for several weeks. Beginning dose is usually 300 mg gabapentin or 100 mg gabapentin if you are over the age of 65. Once you are off Pramipexole increase by 100 mg every few days until you find the dose that controls your symptoms. Take it 1-2 hours before bedtime.If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.

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