It’s been some time since I last posted. During lockdown I augmented on the Neupro Patch and was suicidal. I knew I had to get off the patch as I had already augmented on Pramipexole. This I did by cutting the patches until I was taking less & less. It was as I reduced the patch that the pain in my knees started. I asked others on this site if this was normal and was told that the knee pain was not linked to RLS. My GP agreed to have my knees X-rayed & the arthritis was only mild to moderate, certainly not needing any treatment. Every single night the RLS starts in one leg or the other - this can go on for hours before it starts up in the other leg. Once the RLS sensations stop, the knee pain follows. I have not had a nights sleep in over two years but just an hour here & half hour there, if I’m lucky. I just take one Tramadol at night to ease the pain but this is no longer effective. Does anyone else experience this type of pain? My neurologist says that he has nothing left to offer me.
RLS & Severe Knee Pain: It’s been some... - Restless Legs Syn...
RLS & Severe Knee Pain
I'm so sorry you have suffered so much.Huge well done for coming off the pramipexole. I too have knee pain but it isn't linked to RLS. Though I do get pain in my lower legs sometimes which I do think is linked.
Have you had your ferritin level checked? And are you on any medications that could be triggering your RLS such as antidepressants?
Maybe you should change your neuro.He seems to have given up prematurely. Opioids are effective for RLS and also obviously pain. You could try uping the Tramadol to 100mg.If it doesn't help you could ask your gp for an alternative. I take morphine successfully.
Good luck.
Thank you so much for replying. I’m not on any drugs now except for fenofibrate which is a sort of statin. I stopped taking those for two weeks to see if the pain stopped but it didn’t. There is absolutely no pain in my knees during the day and I’m very active. I will try 100mg Tramadol tonight to see if that helps.
Try upping the Tramadol was taking one Tramadol and it did nothing when I went up to 2 or 3 it worked great worth a try .
Thank you - I will
I have osteoarthritis of the knee and also in my hands. It is at a certain level most days but it recently went through the roof on 2 occasions. The first was when I got the first Covid shot - it gradually subsided. The next was recently, with a probable tick bite. I just got done with a course of antibiotics, and now my knees are back to a more stable and lower level of arthritis pain. So, for some reason those inflammation sites can be negatively affected by drugs or other afflictions. When I had severe RLS I don't recall any involvement with my knees - mostly because I was so involved with the RLS.
I have absolutely no knee pain in the day only with the usual RLS symptoms. The knee pain also changes legs just as the RLS symptoms do. I wonder whether the strong DA’s hid the knee pain. (Clutching at straws here). I will up the Tramadol tonight so fingers crossed. I’d give almost anything for a nights sleep 😡
HiI personally took 100mg Tramadol but after 5/6 years the RLS returned and so at the age of 76! I convinced my GP to up the prescription to 3 x 50mg capsules each night. The first & subsequent nights I experienced 8 hours sleep! So there is a god. However if this dose stops working I have decided to try Gabentine
Unfortunately I have an allergic reaction to Gabapentin. I hope God answers my prayers for a little relief from this curse.
I'm seeing quite a few posts where people report leg and knee pain after coming off dopamine agonists. I don't understand this as I wasn't aware that DA's had any pain relieving effects but several recent posts (3 today) seem to say the same thing. Perhaps there are other mechanisms and connections e.g. arthritis which the DA's help to hide.
Hello Munroist This is what I was wondering. My GP doesn’t think my arthritis is very bad except in my hands. The x-rays showed mild to moderate which he felt could not cause that degree of pain. Unlike my hand which are painful night and day, my knees are only painful when the RLS starts.
It is great that you are getting off the Neupro patch. The first-line treatment for RLS is now gabapentin. Beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off the Neupro patch although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. 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. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at
Https://mayoclinicproceedings.org/a...
Thank you so much for replying to me. In 2005/6 I was given Pramipexole & had 11 good years using that. Then the dreaded augmentation started. To counteract that I was prescribed Gaberpentin. Very soon after starting m that I developed a red, itchy, rash on my face and neck. I suffered with this for over a year being treated for allergies. I eventually ended up seeing a dermatologist. He was baffled. Eventually a friend, who is a doctor suggested that it was probably the Gaberpentin. I stopped it immediately and after a couple of weeks the rash began to subside. The same thing happened with Pregabalin. It was then that the neurologist put me on the Neupro patch. 18 months later I was in full blown augmentation. This is why he now says that he doesn’t know what to do with me. I yearn for a nights sleep!
I am so sorry that you are allergic to gabapentin. Another one to try is dipyridamole. It has helped many people on this forum and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
Gosh Sue - that gives me a glimmer of hope. I will read the study. Thank you so much.
Sue, I'm curious as to the basis for your statement that dipyridamole has helped many on this forum.
I'm only aware of only one person who has had success with dipyridamole i.e. WideBody.
Conversely I'm aware of at least 3 or 4 people who have tried it and either had to discontinue because of side effects or found it ineffective.
LanaCSR has also had great success, and InvoluntaryDancer had partial success. I participate in another RLS forum and several there have had good success with it.
Yes, however LanaCSR reports that she also takes Buprenorphine and Horizant (gabapentin enacarbil) and Involuntary Dancer reports that she wasn’t sure dipyridamole had any positive impact and that she didn’t notice any disimprovement when she discontinued it.
I'm just mindful of not giving people false hope with respect to particular medications.
InvoluntaryDancer said "the awful creepy crawly sensation disappeared completely" And LanaCSR said "The way it works for me is that once I take the first dose, there's a noticeable difference; but after the second dose, I feel like a person who has no RLS for the remainder of the night " so it is obvious it is not the buprenorphine nor Horizant that is doing this. It's not giving people false hope. It's just something to try.
Yeah - I hear you. Every night I feel like the beginning of Star Trek "Sleep the final frontier... To boldly go where no man has gone before!" Before RLS I never had sleep issues - EVER. I used to joke ha ha - I'll have to take a sleeping pill tonight! It does seem better, but many nights of Awake for hours.
It’s a dreadful affliction but I have had tremendous comfort since finding this site. I thought it was just me as I do not know anyone else in my circle of friends who suffer from this. Sadly my son has it & we now realise that my father was a sufferer. When we were young my brothers and I just thought he was a miserable old Git as he used to go upstairs about 9.00 pm. We now know that he couldn’t sit still. Poor chap!!
Are you taking any medicine for your RL?
No - only I x 50mg of Tramadol
I don't take anything for RLS - just a lot of herbal/vitamin concoctions to help with insomnia. Iron supplements were my savior!
So does that mean your RLS is under control and your only problem is insomnia?
Hello Sue No it is not under control - I have leg and arm symptoms but before my 2nd augmentation I was not aware of any pain. At that point it was just the horrendous urges to move. Since then & whilst I have been getting off the Neupro patch I have suffered from this dreadful knee pain & RLS. Never knee pain on its own but alway only when the RL starts.
Actually that reply was for DicCarlson as I know your RLS is unfortunately not under control.
No problem 😃
Hi Sue - yes, my RLS is "gone", but the sleep issues remain. Docs waved requip at me numerous times, but thanks to this forum I didn't take it! I discovered the iron connection on the Johns Hopkins website (Dr. Early). Still asking why was I iron deficient then and not now.
That's great about the RLS, although not the insomnia. Some safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA (not to be confused with gabapentin). Prescription ones include Ativan and Xanax.
I'm stunned that a neurologist says he has nothing else to offer you. Print off a copy of the Mayo Clinic Algorithm. He needs to do some research and update his knowledge.After dopamine agonists have failed, gabapentin or pregabalin should be tried.
Tramadol does help but it's the only opioid that causes increase in severity of RLS ( augmentation) so watch out for that as it's more likely to happen if you augmented on the DAs.
If gabapentin and pregabalin don't help after a month or so, there are many other low dose opioids that work well. Targinact, Oxycontin. Codeine, oramorph and Buprenorphine. If your neurologist needs further info direct him to Dr. Winkelman's opioid study.
Well done for getting off dopamine agonists. I have heard others mention the knee pain and suspect it's linked to long term DA use.
mayoclinicproceedings.org/a...
Hello Joolsg Thank you for replying. I have just explained to Sue why I can’t use Gaberpentin or Pregabalin. I am, in seems, a very allergic person. Penicillin & Aspirin are among the things I can’t tolerate. Thank you for the list of drugs that may help me. I’m shocked to know that Tramadol can cause augmentation. I have read on this site that some sufferes are doing well using Buprenorphine. Maybe this what I should ask for. Thank for always sharing your knowledge with us.
Oh so sorry you can't take pregabalin.Oxycontin didn't help me at all but 0.4mg Buprenorphine has worked brilliantly.
I really hope you get help. Maybe see Prof. Walker at UCL Queen Sq London. He will prescribe iron infusions and low dose opioids.
I had one iron infusion at Papworth just before lockdown. I see Dr Oscroft. I have no idea whether I benefited from it as I then began to wean myself off the Neupro patch. I have not been seen since then because of the backlog of patients due to Covid. I going to put in a request for Buprenorphine tomorrow. Fingers crossed that I get some relief & thank you for your help.
I tried tramadol immediately after augmentation on ropinirole but it seemed to make my RLS worse. Dr. B replied to my emails and confirmed tramadol also caused augmentation of symptoms and that I should try Oxycontin and pregabalin. I was on them for 5 years but they didn't cover the RLS. I'm just so pleased I pushed for buprenorphine. I'd still be struggling otherwise. Big shout out to Shumbah for sharing her success story on buprenorphine. It seems to work for those who struggle on oxycontin.I really hope Dr Oscroft agrees. Fingers crossed for you. I use the pills that dissolve under the tongue.
Hi,just read your post,I too have knee pain recently, I have been on Pramipexole for years,I'm weaning off now,I've been changed to Pregabalin for the last 6 or so weeks.you have described what I too have been experiencing, especially my right knee.i wish for you Sleep and Peace of mind.🙏
Thank you - I am convinced that this is not just arthritis but definitely linked to my RLS. My husband has had a knee replacement and his pain, before surgery was constant. I wish you well.
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