On October 4th I had a left total knee replacement. I was in hospital for four days during this time the first two days were free of RLS and I got the best nights sleep I had had for years. During the third night my RLS returned and I had to plead with the staff to give me Pramipexole. I normally take 2 off 0.25mg Pramipexole and 1 off Co-codamol 30/500 tablets to try and control my RLS.
On my release from Hospital I was given Ibuprofen and Paracetamol to control the pain from the operation. My pain was manageable but my RLS has become significantly worse and for longer periods. It can be in my left or right leg and my arms. Any time I sit down to relax it starts. I no longer try to sleep in bed and take up residence on the lounge floor with the electric fire on. This gives me plenty of unrestrained ( no bed clothes ) area to flail around.
The only way that I can get some relief is to walk around the room with my arm crutches feeling absolutely wretched and desperate for sleep.
I am 74 years old and have suffered from RLS for many years but not to this degree. My knee operation seems to have exacerbated the situation and I have to ask myself is this what the rest of my life will be like.
It is not my intention to alarm any RLS sufferers due for knee replacement but just my own personal experience up to 26th October. I have an appointments with my GP Thursday to see if there is any further help he can offer.
PS. My knee replacement is progressing well and I am managing to walk a little further each day with the aid of arm crutches.
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Greenacre
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I bet you are in the UK, cause thats what some people get given after an operation or even a tooth extraction, we get told to take ibuprofen and paracetamol . I am sorry you are having a bad time with your RLS now. It seems alot of people after a op their RLS revs up. So, you are not alone on that. When you see you doctor i wouldnt let him up your dose of the Pramipexole which is what doctors are inclined to do. You need to keep your dose as low as possible to avoid augmentation. The dosage for Pramipexole and Ropinerole has changed recently and now the experts are saying .25mg a day for Pramipexole and only 1mg for Ropinerole. I see you are taking 2 of the .25mg Prami already so i wouldnt go any higher. This of course is just my opinion, and i am only passing on what i have seen recently about those 2 meds. But one of the doctors in the USA who i trust on his opinion also is saying to keep that dosage down as low as possible. That doctor has a website which alot of us use for information and he is a RLS specialist. rlshelp.org is a good website to look at and is run by that doctor. He also has a email so people can contact him for advice. I am happy your op has gone well and you are progressing well. At 74, we dont wont you sleeping on the floor and after having your knee replacement to deal with too. Good luck at your doctor appointment i hope he can give you something else to help stop those legs from moving, so you can get back into your bed. Look also at the NHS Choices website for other meds which are used for RLS or the RLS-UK website.
Pleased to hear that you are progressing well and I am sure you and your new knee will become good friends. It took me nine months to "forget" I had had the ops. I have had two TKRs and luckily I did not find that my RLS got any worse.
Hi Greenacre, I remember you coming on a few months ago asking for any tips ready for going in for your knee replacement. Glad at least that side side of things sounds as if it has been successful.! Why did you have to plead for your Pramipexole whilst in hospital? It is prescribed for you and should have been given to you daily as routine.
Sorry you are having such a rotten time of it with your restless legs it is often the case following surgery mine ramped up after back surgery.We hear this all the time I would love to know why this happens.
Many people seem to do very well with Tramadol although it didnt help me but it seems you need a stronger painkiller or maybe the Neupro patch would help.
please make sure you stress to your GP this is so bad you are sleeping downstairs on the floor the last thing you need after a knee replacement! Maybe give him a copy of this post , he needs to know how badly you are affected.You could take in some info from the sites Elisse has recommended as many GPs dont know much about restless leg treatment.
My advice would be to try Tramadol. It works for me and I am 68
Similarly my RLS became acute after a prostate operation and the tramadol prescribed after the operation I found gave me the opportunity to sleep and to overcome augmentation. I vary the dosage and still take the dopamine meds (Ropinirole) sometimes with the tramadol. I also found that I could resume the Ropinirole after a week of taking Tramadol and wait for the next augmentation period. All trial & error!
Is the Neupro patch a dopamine agonist? I had a really bad augmentation on Ropinerol several years ago, so I won’t go near a DA. I had a TKR last year and what ramped my RLS was my surgeon took me off my Tramadol, so I could take Oxycodone post-op. He said it would work as well as the Tramadol to keep my RLS at bay. It did not, plus I was off my Tramadol for 17 days, so I was going through withdrawal—I didn’t even know it. Once I got back on my regular cocktail of Tramadol and Pregabalin, my RLS settled right down. I’ve been on that combo for 5 years. It works well for me.
Thank you all for your kind comments and advice. To answer your question "pippin" it was during the night when my RLS kicked in and the staff on duty did not have the authority to give me my Pramipexole. They eventually decided to contact the doctor on call for his permission.
I would appreciate it if someone could explane for me in simple terms what is meant by Augmentation with respect to RLS and Pramipexole. I should know this but must be a senior moment because I am not sure.
I will let you know how my visit to my Doctor goes and it will be good to have as many facts as possible.
Basically augmentation is something that can happen when you take the dopamine agonist drugs.The main ones are pramipexole(mirapex),requip and Neupro patch.
When augmentation occurs your meds begin to make your rls worse instead of better. Usually what will happen is your symptoms will start earlier in the day, maybe spread to other parts of your body most regularly the arms and they wont work quite as well at night. Doctor who dont know about augmentation -and most don't -will increase your dosage which is absolutely the wrong thing to do.Once increased you will be ok for a few weeks/months then eventually symptoms will come back even worse. This is why it is now recommended by many rls experts to keep doses of these meds very low.
Any time you get any chemical that interferes with the dopamine system, that is out of kilter to begin with or you wouldn't have restless legs, you will go thru a period of readjustment and it will take 6 months or more to return to the condition you were in prior to the operation.
I had a bowel block and couldn't take anything by mouth (had a tube inserted to pump acid from my stomach) and had to beg for the narcotics to replace the requip. The immediate relief was good, but the readjustment over time was just like it was before I got RLS under control in the first instance.
You'll find yourself coming back to normal over time.
Thank you for your explanation of Augmentation, now I understand. I have to admit that On a few occasions at night when I have been desperate for relief I have taken an extra Pramipexol. Now I realise that this was the wrong thing to do.
I will update my post again following my visit to my GP.
Yes let us know how you go on at the docs.If it was myself in your situation just hac knee replacement recently I would ask for a strong painkiller like tramadol.This is just my personal opinion .So sad to think of you on the floor straight after an op , hope things improve for you soon.x
Hi Greenacre, I cant tell you what to take you need to discuss it with your GP (disclaimer!). BUT It is not usual to take Co-codamol and Tramadol together as they are both mild opiates so it would be one or the other.Tramadol is stronger so as Co-codamol is not working I would go with Tramadol.As for Pramipexole it is harder to say.If you are starting with augmentation it would be best to try to reduce it , then again it may not be augmentation your legs may have just ramped up due to surgery, You can take Pramipexole and Tramadol together many people do.
The other option would be the Neupro patch in place of Pramipexole .This gives 24 hour relief for many.It is expensive so GPs can be reluctant to prescribe it.I had to plead my case to get it and although it failed me last night the vast majority of the time it works well.
In my opinion thecfact that you are 74 years old, getting over a knee replacement op amd having to sleep on the floor , hobbling around on critches should entitle you to the patch regardless of cost! However its your GP you have to convince not me!The other thing if your GP is useless regarding RLS treatment as most are you could ask to be referred to a Neurologist, he /she is more likely to prescribe the patch.Tramadol can be used alongside the patch
We've got to get these doctors to recognise that their surgical procedures don't rule out any other problems we have. I like the attitude of your GP.
I would reckon that he/she can help you either get the Pramipexole working again or try some other medicine. He/she might suggest referring you to a neurologist for a full assessment and review of what you might find effective. Please let us know how you get on.
(One thing I found out about the neurologist I was referred to was that she was on the receiving end of the jerks like my husband as her partner has RLS. This made me think she's definitely going to be empathic to not just the person with RLS but the other people involved)!
Hi all, yes had a visit to my GP today, whilst he appeared to be sympathetic I got the impression that he was at a loss as to where we go from here. In conclusion I asked if I could stop the Co-codamol and go onto Tramadol as suggested by members of the RLS forum. He agreed to this and I was prescribed 50mg capsules. Dose to be one or two four times a day and recommended I take two at night.
Watch this space I will take the capsules and return to my bed tonight, first time since leaving hospital on the 6th October.
Yes, yes, yes, I did it. I took two Tramadol and two Pramipexol, went to bed and slept all night. Amazing, although I woke up feeling zonked out (drowsy) for most of the morning. Looking forward to a repeat performance tonight. The only thing I missed was my wife making me a cup of tea at around 2am (can't get the staff these days) I love her really.
Thank you all for your help and support, I hope the medication continues to work.
Ah Greenacre you have made my day! After a bad night I am feeling washed out but your good news has perked me up.Thats fantastic back in your bed and getting the rest you desperately needed after your knee replacement. Hope its the first of many good nights for you.I have decided to try tramadol tonight so fingers crossed.
Glad you are still doing well Beady, I am going to give Tramadol another go tonight.It didnt work for me a couple of years ago but I will give it another go.I didnt get to sleep until 7am this morning then got a few hours.Washed out and aching now. Take care ..pipps x
Nice to hear from you Kim. You try Tramodol I bet they work this time I just can't get over how they have changed my life,what about the Patch though?,let me know tomorrow how you get on Beady 3 x
Hi friends, you may remember My earlier post. I had a total knee replacement, was suffering from RLS at night. I need your words of wisdom again. Yes I am still taking Tramadol 50mg capsules. I take one at 6pm and two at 11pm along with two 0.18mg Pramipexole tablets. Yes I manage to get some intermittent sleep and I don't get any twitching "great". I am concerned however that since taking Tramadol I seem to be having the following symptoms. Feeling tense and nervy and find it difficult making clear decisions. I have very little energy and even after a small amount of activity my whole body aches and I need to sit down. I find it difficult particularly at night to keep my body temperature constant. I either feel very hot or cold and shiver. Is this what I can expect ? Your comments would be appreciated.
hi greenacre, i will be 74 next week and lining myself up for a knee replacement in 2015.
i was in hospital for an op. in 2000, no problems at all with rls. the same if i have a bad head cold or flu, no rls.
tramadol sends me into a dizzy world so i avoid them and take co-codamol for any pain from the knee.
i find that the trick with pramipexole is the timing, for me it is one at 12-30 and two at 17-00. by the time i go to bed around 23-00 my legs have settled down.
thanks for your interesting posts . have a peacefull christmas. pete.
Hi! I had a knee replacement 10 months ago and it still hurts, doesn't bend very well. I too suffered from RLS for many years. My pain specialist put me on Gabapentin and I have not experienced RLS since I started on it. With all my health issues it was a blessing to have one less. I urge you to ask your doctor to give that medicine a shot and I hope you have the same outcome. Best of luck to you.
I had the same experience after total knee replacement and have read that doctors who specialize in the treatment of RLS are aware that sometimes the disease is exacerbated after major surgery but they don't know why. I eventually had to stop mirapex because of augmentation and eventually had to take methadone. Methadone is wonderful and it completely masks all my severe RLS symptoms You may eventually have to take an opioid too in order to control your symptoms. Read the Mayo Clinic updated treatment algorithm for RLS. Hope this helps!
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