Well I have succeeded in stopping both the Ropinerole slow release and the Sinemet Plus ! I am now on 600mg of Pregabalin and I don’t think it’s helping much at all and just a quick note thanks to reading some of the posts here I also stopped the Fluoxetine and it had a dramatic impact. My RLS improved immediately !
Does anyone else suffer from progressively numb feet ? My last GP thought it was connected with the RLS but I have now lost all feeling in my toes and it is spreading .
That is fantastic. Congratulations on getting off both!Do you still have RLS? Is it waking you during the night?
You're on a high dose of pregabalin and that may be why you have numb feet. Pregabalin can cause swollen feet and lower limbs and water retention. You could try slowly reducing the pregabalin by 25mg every 2 weeks and monitor whether the numbness improves.
It’s all thanks to you Joolsg and all the other wonderful people who have given me so much support and advice , without you I honestly don’t know what I would have done . The RLS has improved , so instead of nearly 24 hours a day it’s late evening and night before it really starts and yes it does wake me up .That is an astonishing fact about the side effects of Pregabalin , it never occurred to me but I will start immediately to reduce the dosage to see if that helps . Thank you again for taking the time and patience to “ sort me out “ , you are worth your weight in gold .
Passing it forward. Pippins, Madlegs, Elisse and Raffs really helped me 5 years ago when I was on Ropinirole and I intend to do the same.Everyone knows how awful RLS is and how little their doctors know so we all have to pass on the research and advice.
Hopefully, the numb feet will settle. Most side effects do after 3 to 4 months.
That is noted Joolsg 😊
mayoclinic.org/drugs-supple... does cause numbness in the feet. It's apparently a common side effect.
Hi
Well done with Ropinirole, another victim saved
No.mention of numbness from pregabalin here as far as I can see -
mayoclinic.org/drugs-supple...
It can cause retention of water in the foot/ankle which could put pressure on peripheral nerves in the foot.
In which case are your feet/ankles swollen?
Try this, press your thumb firmly into the top of your foot/side of ankle. It should cause an impression.
Then let go!
Does the impression immediately disappear, or does it only slowly fill up?
The slow fill up may indicate water retention.
I'm not going one way or the other here. The danger is that when 2 things occur simultaneously it's easy to assume one causes the other.
I would err on the side of caution, A little healthy skepticism. If
the numbness continues creeping up and intensifies at what point will you ask for a medical opinion?
Do you wear socks?
Thanks Elffindoe, I don’t see any swelling but I am definitely less steady on my feet than I used to be which I had put down to age (71) . I did mention it to my last GP who didn’t comment ( he also left the practice rather suddenly!) Having read all the info from the links provided by your good self and Joolsg I am definitely going to try reducing and eventually stopping the Pregabalin. Yes , I do wear socks at home !
Unsteadiness, could be a sign of peripheral neuropathy, but not necessarily.
Another thought is that if the soles of your feet are numb, you can't feel the floor very well. This can affect your balance.
Are your socks too tight, or too short? Calf long socks better!
I have had numb feet for over a decade. I always feel I have socks on, even when I haven't.
If you can't stand on one leg for at least 60 secs, it says you're possibly at risk of a stroke.
60 secs, I wish? 30? hmmm!
Luckily, that is one of several other criteria and I pass on all the others. I can't remenber what they are.
neurologylive.com/view/simp...
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I have just tried standing on one leg…..no comment, but I had better say thanks and goodbye !! 🤣🥴
PS, what will your RLS be like if you stop the pregabalin?
What would you replace it with?
That is a real concern , I’m running out of options .
Numb feet and unsteadiness are symptoms of peripheral neuropathy which can make it more likely you have RLS.Unsteadiness is also a side effect of Pregabalin & can be worse with higher doses.
If you decide to reduce the dose of Pregabalin it has to be done very slowly & gradually.
Unsteadiness can also be a sign if aging but I would be surprised if a Dr blamed age without checking other things.
Peripheral neuropathy can have many causes so should be investigated if that is what it is. One of these is Diabetes. There are other important causes which need ruled out too.
I would strongly advise you see your GP & ask for these symptoms to be investigated. Some are easy GP tests. Others need referral to a neurologist for eg nerve conduction studies.
I would not just accept it relates to Pregabalin without having other things checked.
Don’t let any medical professional just dismiss it without checking what it is.
Please do let us know the outcome too.
I have been diagnosed with genetic inherited peripheral neuropathy (CMT syndrome) and have numb feet. The numb feet began at about age 40 when I kept feeling that my socks were bunching up in my wading boots when I was fly fishing. I was also put on 2.0 mg pramipexole and 1500mg gabapentin for RLS by a sleep clinic doctor. I took these doses for 9 years. I recently reduced the pramipexole by 0.125mg/2 weeks for 36 weeks down to 0.00mg and completely eliminated my swollen feet and ankles. I still take 300mg at 5pm and 900 mg gabapentin at 8pm per day. I am taking 100mg trazadone for sleep and started taking CBD. I use a CPAP unit to reduce the snoring and sleep apnea issues. If I could lose the 50 pounds I gained on these pills, I might see a more dramatic improvement. I don't seem to have diabetes. The numbness in my feet definitely affect my balance. I am 75 years old.
There is not much benefit of taking more than 600 mg of gabapentin as it is not absorbed much above that dose. I would suggest you switch to 600 mg at 5:00 and 600 mg at 7:00. If that works as it should, you might try 500 mg at 5:00 since you weren't getting much use above the 600 mg at 7:00.
Thanks , I did mention this to my last GP also the strange sensation of my feet slipping when they weren’t , he did agree that there was significant numbness but that is how it was left , still can’t see doctors here , it’s telephone consultation only . I will keep this in mind and let you know the outcome when I do finally see him . Your advice is much appreciated .
Very frustrating for you! Shouldn’t be ignored. I have peripheral neuropathy ( not Diabetic ) which is why I know a fair bit about it & all the tests I had. Mine started over 10 years ago when it was easier to see a dr
I am going to try reducing and stopping the Pregabalin while I am waiting to see my GP , it’s worth a shot , thanks .
If you do I suggest doing it very very slowly. You get rebound RLS or withdrawal symptoms if you stop fast. I think I reduced by 50 or 25mg per week. The hardest part was reducing the last small doses.Other folk might have a different reduction regime but that’s what I did
Ok thanks
Like others I have some nerve damage and it manifests itself as numbness in feet, mainly toes, and the feeling that socks are bunching or shoes too tight or there’s something under my toes. I took pregabalin for a while but it didn’t give me numbness.
Please get you doctor to check for Diabetes. It could be a symptom of it. Just to be safe.
Thanks , will do .
If you are diagnosed with peripheral neuropathy, as I was, I’m going to risk boring everyone with my repetition of my advice to be super diligent in looking after your feet. In my case, the cause was a complication of RA,, and,sadly, the meds which controlled that nasty disease also predisposed me to infection.The neuropathy evolved into,Charcot feet and finally the left foot completely collapsed. Despite multiple surgeries Te foot was so deformed and the hardware in it so contaminated that the resulting ulcers were bone deep and kept landing me in hospital . The only treatment for these ulcers is total contact casting and taking me off the RA meds, leaving it to rage unchecked. End result: next month amputation of left foot. After healing, and a hopefully well- fitting prosthetic, I’ll have another surgery to try and save the other foot.
So you see my point: super vigilance! Check your feet for ulcers daily. See a chiropodist monthly. Never go barefoot. Wear supportive shoes, with orthotics.
Without the RA connection, your likelihood of ulcers is far less, but the lack of sensation means you can hurt or cut yourself without knowing it. Hence the daily checking.
Since both RLS and non diabetic neuropathy are neurological issues you’d be wise to consult a neurologist. I dread my upcoming surgery but my only other option is living in bilateral casts as I have for the last year+. And, believe me, with RLS, that is a nightmare.
Sorry to repeat myself to those who so kindly responded to my previous post, but, had I followed this hard earned knowledge from the outset I would have spared myself a great deal of pain and suffering.
That is horrific, poor you that is a true horror story. Good luck
Tell me how you got off ropinerole and how much were you taking , I’m on 2/1/2 mg
I was on 1 slow release twice daily ergo 2mg daily and I started by using a pill cutter and halved 1 so for the first 3 weeks I took 1 and 1/2 daily then continued to reduce every 3/4/5 weeks depending on how I was feeling . It took quite a long time , the secret for me was to take it very slowly and gradually , do NOT try to rush it .Good luck
That info is a godsend I’m prepping myself for the journey bless you and thank you
Don’t worry if you backslide at times , the end will be worth it so don’t give up 😊
I have the numbness constantly, the only satisfaction for me has not been anything but a pair of socks. But I don't like having socks on nearly all the time, except for shower of course 
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