I would like to ask the community if anybody gets this feeling in their feet and now my legs. I get RLS quite severe. I take premapexil to keep it under control, which works reasonably well. I’ve had strange feeling feet for about 7 years and when I think RLS started. My feet have got worse and feel very dry and I have to rub moisture cream in them every day. They have a dead feeling in them and feel spongy. But now in more recent times in the last year my walking has got so I can’t walk very far. My legs feel heavy. I want to walk and used to walk miles. I get tired but I force myself to walk and I have to pull myself upstairs with the handrail. I wonder if it’s all to do with restless legs and I would like to know if other people with RLS have the same symptoms. Thanks in advance to anybody that can respond.
Weird unexplained feeling in feet and... - Restless Legs Syn...
Weird unexplained feeling in feet and legs.Is this to do with RLS?
Hi BTABKWJ4561. I’m currently withdrawing from 6mg Ropinirole a day and from 23 October 2022 am down to 3mg per day and have been suffering similar symptoms to those you are and it’s got progressively worse with each 0.25mg reduction. Pain in shin bones and extreme pain in knees making walking both painful and difficult so I can really sympathise with you. I’m 77 and used to be very active loving walking in the hills but not now although I do go to a gym class which helps with muscle strength but can make RLS worse if I overdo it, mild exercise is recommended. I take a Codeine and Paracetamol pain killer when it’s really bad but try to limit dosage as it can be addictive and I’ve enough trouble with Ropinirole at moment. I’ve found that Kratom Red Leaf Powder, half to level teaspoon made into a tea does work wonderfully well but being illegal in UK I’ve stopped using it only due to the fact that I’m still driving most days and if if I had an accident even if I wasn’t at fault I’d be tested buy the police and it stays in blood stream for a long time if used regularly. It’s incredibly unfair as it’s medical benefits when taken responsibly for a vast number of conditions can improve the lives of people suffering from chronic conditions, I do know that it’s sometimes prescribed by the more enlightened within the medical profession but I’ve not met any yet although I’ve asked my own GP and as with other Opioids refused. I’m sorry if this sounds like I’m on my soapbox but after 40 + years of RLS which ends up dictating your life we all need to shout out loud.
Good luck and really hope you find a listing ear and. receive help.
Definitely see a neurologist if your GP refuses opioids to help you get through withdrawal.Also, kratom does not show in any blood tests. A poster on another RLS forum in the USA explained that opioids and cannabis are detectable in blood and urine tests, but not kratom.
Prof. Walker or Dr Dhanjal at Queen Sq in London will treat severe RLS with low dose opioids like Oxycodone and Buprenorphine.
Often, gabapentin and pregabalin do not work after dopaminergic augmentation so opioids are the only option available. If your GP refuses to prescribe them, you will need to see a neurologist.
Hello Joojsg. Thanks for the info on Kratom that is certainly something I didn’t know so will give it another shot as it worked so well. Thank you also for putting me right about the pain in legs and knees and issues walking, I’ll certainly have that checked out via my GP.
I did make contact requesting a telephone consultation with Professor Walker completed an on line form over a month ago, have had acknowledgment but sent a reminder two weeks ago which was acknowledged but no further on, so will be phoning his secretary this week if I can locate a number. I appreciate your help Joolsg, and apologies to those people I may have mislead.
Regards HipHop1972
RLS can definitely cause pain when walking, but getting so tired from walking that you need to use the handrail for help sounds like another neurological issue.Prof. Walker seems to be extraordinarily busy as he is taking a long time to respond to people.
Keep emailing and calling.
He who shouts loudest......
Hope you are not suffering too badly with withdrawal symptoms and are managed to get some sleep.
Thank you Joolsg. Will do some pestering. Got 5 hours last night which was nice but woke at 4 fighting the duvet so had breakfast 🤣
Everyone is different but this is my life… I’ve had rls for years and have tried all kinds of different treatments… right now this is what I’m taking and working at this time!! I take 1mg of Ropinerole 3x a day, Seratame twice a day (you can only get it on line from Biogenics) and I just added Hyland’s Restful Legs which is from Walmart ina red bottle (several different colored bottles) and these you can take almost any time you feel your symptoms coming on and I’ve been taking 2 dissolvable tabs and surprise it’s working for me!!! I wish everyone who has this horrible disease best of luck in finding their own relief 🙏🙏🙏🙏🙏🙏
i also use Ryland’s Restful Legs. I order them from Amazon- i found much cheaper than Walgreens. Hadn’t seen them at Walmart.
I was on Ropinirole for over 12 years. It worked brilliantly for the first 7 years then augmentation crept up on me.Worst time of my life getting off that stuff and I will never touch a dopamine agonist again.
I hadn't realised how bad it made my RLS until I got off the stuff.
I can now sit through car, plane, train journeys and the cinema. I have zero RLS on low dose Buprenorphine.
Watch out for signs of your RLS getting worse, starting earlier in the day. That's when it's time to get off Ropinirole.
That does not sound like it has anything to do with RLS.What you're describing sounds like another neurological disorder.
If your walking is affected and you are struggling to get up the stairs, that indicates something else.
I suggest you see your GP for tests and explain that you are experiencing difficulty walking.
Did you follow the advice given last year about augmentation? Your RLS will stay 'severe' until you get off Pramipexole completely.Pramipexole actually 'feeds' RLS and makes it worse. You're on a very high dose. You were on Ropinirole before, another dopamine agonist.
UK doctors know nothing about RLS or augmentation.
I hate to see people suffering with severe RLS when there are better treatments.
Please reconsider. Read the Mayo algorithm and this article by a top expert, Dr. Winkelman.
Dopamine agonists are no longer prescribed first line for RLS because the worsening of RLS is too common.
Gabapentin/pregabalin would be better for you, but they don't work until you're off Pramipexole.
Hi- very similar to myself. In part the problem walking is to do with age (65) and smoking, so breathing, but after tests my circulation in my feet is fine. The most likely explanation my doc and I have reached is the physical stress that constant severe level RLS causes the muscles and ligaments and because of the timing (early 2020 before testing was available) Covid- I know several people who are experiencing similar symptoms which came on suddenly (or got much worse) after having it. It’s anecdotal, obviously, but like the question of what RLS drugs/treatments work for who (or don’t), the frustrating part is there are no definitive answers- everyone is different. I’m sure this doesn’t help except to say you aren’t alone. Alex
I have exactly the same experience. Legs feel super heavy plus after a bad night, I have bad muscular pain,, in my legs. Been on Pramipexole for decades and now on Pregabalin after augmentation. I am only 55 years old but have to kling onto the handrail, too when 'climbing" stairs. On top of it I have twitchy toes which I can only stop by putting my other foot on top and grind my teeth constantly. My neurologist did not examine me when I had my appointment last year for Parkinson or anything else, just prescribed Pregabalin. 
Only thing I may point out is that they have discovered onset of arthritis in my knee when doing an x-ray. Wondering if anyone else has this, too
Very strange situation!?????
Have you considered that your sensations in your feel and difficulty walking may be related to a spinal problem? I have a close relative who was struggling to walk more than 100m without losing the ability to move his legs, he said it felt like he couldn't tell where his feet were. He also had back pain and was eventually diagnosed with stenosis of the spine around L3/L4 which was recently corrected with some significant surgery and he is now able to walk again. He did have some pain in the lower back as well. Personally, I have permanent sensations in my feet after a slipped disc a few years ago although luckily I have no motor problems. There is a correlation between people who have neuropathic issues and RLS. I’m sure there are other possibilities but I would think it’s worth considering.
maybe search the symptoms for neuropathy. Ik have developed small vessel neuropathy. Always feels like dry feet and burning.
RLS. Is not painful! It's a dreadful urge in limbs to jump and cannot control it. Only walking around can suppress that urge. Pain in bones is not RLS. Should get medical advice.
Sounds like what I've been struggling with for a couple of years. I think this is seperate from RLS. In my case it has resulted from me being a type 2 diabetic causing peripheral neuropathy. Just as a comparison I am male, 76, and obese. Your experience with the sensation of your legs feeling like lead weights is what caught my eye. A nerve conduction study is a place to begin. I will watch your progress and jump in when it seems appropriate. My condition is improving but not because of traditional medicine.
like Joolsg I would also say spinal diagnosis is needed. I too had these symptoms 5/6 yrs ago and it has proved to be spinal. I have been waiting now for a number of weeks to have a consultation with Prof Walker either via video or telephone but his list is so long!!!The Secretaries say over a years wait. Unfortunately Dr Dhanjah only does face to face consultation but no video or telephone so you have to go to London in person!! Hope you get help soon but I would recommend in my humble opinion that you need some sort of consultation re your ongoing problems. Please please take my advice and get your spinal symptoms diagnosed by MRI or CT scans. You do not want to end up as I am.
Soak your feet in Epsom Salts in a water basin add 1 cup of ES in warm or cold water
Let them soak for 20-30 minutes or more Take Magnetism Citrate 150mg 3 times a day or Calcium/Magnesium 333/167mg twice a day. Try one or the other to see which one works best for you
I believe I heard or read that RLS can cause neuropathy .
This sounds just like me.
I have had chemotherapy in the past and whenever I go to the doctor about my feet feeling swollen or dead they say ‘what do you expect ‘ really not helpful at all.
I get the heavy legs going up the stairs and at night my ankles feel as if they are pulsating, I don’t sleep very well because of this.
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