I have posted before about my unbearable knee pain & sadly it still persists. All the years that I was on Pramipexole & then the Neupro patch I got the very uncomfortable RLS symptoms of creeping sensations in the legs and the impossible ability to keep them still. but never pain. When, during lockdown I augmented again and had to wean myself off the patch, the pain began. My Doctor has been very supportive and twice since then I have had both knees X-rayed only to be told that they are in extremely good shape for my age. I believe this because in the daytime I am absolutely pain free & able to swim, cycle and walk. At night, it’s not even the same knee that causes me the pain but it goes from knee to knee. It is eased by the usual list of things that help RLS but comes back within half to 3/4 hour again. I’m lucky if I get two hours sleep from about 5-7’oclock in the morning. Tramadol doesn’t help. I have tried both Gaberpentin & Pregabalin but anything over 300mg gives me intense rashes. So at the moment I take 300 mg of Gaberpentin and 2.5mg Oxytocin. I have a telephone consultation on Wednesday week with the sleep clinic and just do not know what to ask for next, as last time we spoke, he openly admitted that he didn’t know what else to do with me. I have suffered with RLS since I was 13 but only took Pramipexole in 2006. I have had two iron infusions but they made no difference. I would appreciate any more advise. So grateful to be a member of this site.
Intense Knee Pain : I have posted... - Restless Legs Syn...
Intense Knee Pain
If iron infusions have failed and you clearly react badly to gabapentin and pregabalin, then your RLS is refractory.Low dose opioids are next line treatment.
The longer lasting opioids seem to work better for RLS. Buprenorphine or methadone.
Most GPs will refuse to prescribe them, but you need sleep.
I suggest you ask for Buprenorphine when you speak to the sleep clinic as they are more familiar with RLS and prescribing low dose opioids.
Many of us in the UK are doing well on low dose Buprenorphine.
I take 0.4mg (0.2 at 9 pm and 0.2 at midnight). I get zero RLS night or day and sleep over 8 hours every night.
Dr Buchfuhrer says 97% of RLS patients will get 8 hours sleep with the right treatment.
Thank you for your reply. I am in the UK and my Father had RLS, although at the time we didn’t realise what his problem was. My son is also a sufferer although at the moment it isn’t every day. I do take 2.5 mg of OxyNorm but although my doctor prescribes it because the consultant advised this, the pharmacist embarrasses me each time that I need to collect it from him. Not only does it come with a bright red label stuck on it, for all to see but he also lectures me on its dangers. I am so frightened of this drug that I stick at 2.5 mg. A 100 mg bottle lasts over 5 month. Is Buprenorphine stronger than OxyNorm?
Oxynorm is stronger than liquid morphine. Buprenorphine is stronger than Oxynorm.Opioids have a bad press for good reason. Overprescription in the USA for pain has led to an addiction crisis.
However, Dr Winkelman set up the Massachussetts Opioid Study to prove that low dose opioids used to treat refractory RLS do not lead to addiction (craving a hit or high from the drug) or tolerance (having to increase the dose to achieve the same effectiveness) unless there is a history of drug abuse.
The doses used for RLS are far lower than for pain.
I was terrified of starting opioids, but I had exhausted all other options. Dopamine agonists severely worsened my RLS, iron infusions made no difference. I agreed to take Oxycontin and pregabalin. For 5 years, they didn't cover my severe RLS.
I then seriously considered suicide. Not out of depression or despair but because life was so awful. I was surviving on 4 hour's broken sleep a night which was worsening my Multiple Sclerosis.
Shumbah had been in exactly the same position and had flown to NY from Australia in a last ditch attempt to get help. She was prescribed Buprenorphine and it was so miraculous she wrote about it on this forum.
I pushed for Buprenorphine and it had the same miraculous effect.
I understand you may feel embarrassed collecting oxynorm from the pharmacy, but pharmacy staff need education about low dose opioids for refractory RLS. You shouldn't be made to feel ashamed. You have a disease that requires medication. Morphine was first used to treat RLS in 1670 by Dr Willis in London.
The Massachussetts study shows we don't become addicts or develop tolerance.
It just seems such a shame that you are suffering so much and existing on so little sleep when you could be free of RLS if Buprenorphine works for you.
Many on here do well on Oxycontin, but a few suffer mini opioid withdrawals over 24 hours because of its short half life.
Read the Massachussetts Opioid Study and look at Dr Berkowski's website. He is a top RLS expert and will not prescribe dopamine agonists.
He prescribes Buprenorphine or methadone because the long half life is so effective for RLS.
I can’t thank you enough for this information. I will read up on the Massachusetts Opioid Study so that I am well informed. My telephone consultation is on Wednesday 20th September. I will definitely let you know how I get on. Again, my grateful thanks to you for taking the time to respond & for sharing your story. 🤗
i have had thigh weakness and pain extending down to my knees since augmentation on pramipexole. i am searching for a cause but at times i think it may be related to the augmentation. otherwise doctors just look puzzled but having some tests on my legs this week to help determine the cause.
That’s interesting as I had no pain until augmentation. At least your doctors are taking it seriously. Good luck.
I suspect that the reason that you only experience the pain at night is that it is down to your diet and that all the triggers build up towards evening. The fact that you are free of pain in the morning is because you haven't been eating overnight.
Most likely causes of the pain and the RLS is inflammation. Lists of inflammatory foods are available on line but top of most lists are refined carbs (processed foods) and refined seed oils e.g. sunflower oil etc and margarine. Other possible causes are artificial preservatives (processed food). Remember that apart from pure wholemeal (like that sold in wholefood shops) bread is a processed food so are fruit juices which contain a similar proportions of sugar and lack of fibre to Coca-Cola etc.
Thank you for replying. I am of the generation that cooks from scratch so do not use processed foods. We have a vegetable garden so grow our own fruit and veg. I also kept a food diary for my consultant, so am aware that dietary variations can trigger RLS. This extreme pain comes with the RLS symptoms & goes away once I move around. This pain only started when I was trying to get off the DA’s & never before but my diet hasn’t changed so I’m more inclined to think the pain is either due to damage from 12 years of DA usage or augmentation itself. Very many thanks for replying to me. RLS is an enigma!
I take 2 x 24mg iron tablets at 3 - 4pm (on empty stomach) 2 pramat 7pm and 2 cocodamol at 9pm. This works for me
Thank you - have you been offered iron infusions? I wonder whether I would react better to oral iron as the iron infusions didn’t help me at all.
I'm quite happy with the medication I'm taking
I’m sorry if I didn’t explain what I meant more clearly. As I have had two infusions with no success, I was wondering whether taking iron as you do, that is daily, would be more effective for me than infusions.
I see, sorry. I have no experience of infusions at all
I am so sorry to hear you are having such trouble. I am a physio with 30+ years experience. And 30+ years of insomnia and RLS. I read your post and these thoughts came to me. Here is a different take on knee pain, your RLS notwithstanding.
Do you have any back issues? The spinal nerves can refer to your knees. In the same way that sciatica causes pain down the back of the legs, there is a large nerve called the femoral nerve that comes from the mid lumbar area (about your waistline) that refers to the knees. Trust me… you can have pain referred to the knees without back pain. This is very common. It is the complexity of referred pain. I note that you can be happily active during the day but the trouble is at night. This is also feasible. What is your mattress like? It should not be more than ten years old. What position do you sleep in? Do you feel different lying on your front to lying on your back? Is your spine flexible? Can you bend forwards and backwards and also side bend equally right and left without moving your pelvis.. Any difference needs investigating.
I would talk to your GP about this. Nerves are perfectly capable of giving you burning, shooting, gnawing, water trickling down the legs…… And for the pain to swap sides. Nerves are magicians! For good and bad!! Suggest to your GP that you get an xray or a scan of your back. (Can be hard to get an xray on nhs these days… ).
Where do you live? I live in Sheffield… i am still offering physio assessments in case you live near-ish.
I hope this is helpful and doesn’t worry you. Do write back if you have any questions.
Les alias Jukebox55 (woman!)
Gosh - much of what you have said is ‘spot on’. Yes I do have back trouble and the water trickling too. Our bed is only 5 years old & the head and feet can be raised. For RLS sensations I have to sleep either fully on my front or back. Both of these positions give some relief to my knees. I am living in Hertfordshire. Thank you so much for this information. I haven’t ever linked the two issues but feel that you could ( hopefully) have the answer. Definitely going to pursue this route. 🤗
Ok, sounds like an avenue worth pursuing. There is a very competent physio called Andrea who works in covent garden. She is inquisitive, creative and has great skills. I referred a friend to her who was very impressed. Good to go for a recommendation, isn’t it?
Good luck and i would love to hear the outcome!
Les xx
I have made an appointment to see my doctor tomorrow so that I can get my back X-rayed. Once I know whether this is the issue will definitely take it further. I can get a train into London so thank you for the recommendation. After reading your reply I have felt very positive & uplifted. I’m praying that this could be the answer and that maybe I am dealing with two separate conditions. Again, thank you so much. 🤗
good luck!
Hello again
I managed to get a face to face doctors appointment but when I arrived at the surgery my appointment had been changed & I was sent to see the Physio. I was very cross about this. I am, what used to be called, double jointed and am still very fit. After making me go through the usual pushing against him and doing a bridge position he agreed that I was strong and fit. He pummelled my back and found an extremely sore point on the lower left side of my back. The outcome was that he dismissed me, saying that it was just wear and tear. I tried to explain that I needed to eliminate spinal issues from my RLS but he didn’t know about RLS. The outcome of this appointment was that he would refer me to a doctor and that would be at the end of September. I explained that it was urgent and that I was prepared to pay for the MRI but no joy. I got the telephone consultation with my sleep consultant and he thought all the pains were RLS. His advice was to just keep taking more opioid until I reach a pain free dose. I take 2.5 and he said that I could go up to 10mg. I am really shocked at the thought of such a high dosage of opioid. Strangely, my back is really bad at the moment so I now have two sorts of pain
I’m going to the RLS AGM in London on Oct 7th so I’m hoping to learn more about this evil complaint
Thank you for your help
oh, so sorry that didn’t go acc to plan. The physio sounded a bit arrogant… good luck to you, Les
I too have painful knees. My wife who is a physio says it's likely due to me violently kicking all night. I have been trying to get off sifrol and getting argumentation and knees are very painful
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