I have had mild RLS for years but after a hip replacement last July and coming off morphine 3 months ago, my RLS is unbearable.

[Trubs]

It is mostly in my left leg and also I have a need to constantly flex the muscles in/around my sacroilliac, left side. This is the side that my hip replacement was done. I have had several blood tests and there was nothing significant. Am taking quinine sulphate and folic acid but not really any improvement. It is almost unbearable as I find it hard to drop off to sleep and then, when I do, I wake up again with it.

[Hidden]

Hi Trubs, Sounds like many of us you are having a hard time.There are treatments for restless legs, Some find meds like mirapex and ropinerole help alot but after a while they dont work as well but othets are on them for years without problems.It can be very difficult to come ofg them though as withdrawal is tough.I am trying to wean off at present.Others find relief from painkillers such as tramadol or pregablin gabapentin and asprin.Its just a case of finding out what works for you.Go and see your doctor to discuss treatments and get your ferratin iron checked .I had surgery on my back many years ago and it was my left sciatic nerve thet releasef and my left leg is the worst for restless legs.Are you on any other medication as some can make legs worse,.? Keep coming on the site as there are some very knowledgeable members(I am not one of them I just know basics!).You will find support which we all need at times the lack of sleep can be overwhelming I know.Take care ...kim

[Trubs in reply to Hidden]

I have also been taking Tramadol but that doesn't help. I have had numerous blood tests and nothing significant has been found just one or two things slightly raised or lowered. As a result I am taking folic acid, which hasn't helped. I am also taking quinine sulphate to no effect. It seems to have as great an effect on me mentally as physically!

[Hidden in reply to Trubs]

Yes I understand what you mean it does egfect you mentally aswell.Tramadol dosnt do much for me eithet but I got a good 5 years relief with mirapex

[Trubs in reply to Hidden]

Will suggest this to my Dr on my next visit. I'll try anything (even amputation!!! - almost joking!)

[jumpylegs]

You rrun of the mill blood tests may be reading ok, but it is likely that your ferritin serum level has not been checked. This isn't normally done as a routine blood test. It can be low even if other blood work reads ok. Ferritin is the level of iron that is stored. Drs usually accept that ferritin readings of 20 or 30 are ok but as a sufferer of RLS you really want it up around 100.

[Trubs]

ThT's useful to know as I've had loads of tests done but not sure if that's one of them. I'll check and then check the results if it has been done.

[Jaynielynne]

You were on morphine too long and the body got used to the effects of calming rls.

I doubt that anything less would curb that need to stretch it out and would keep

you from going nuts with rls. I think that a more gradual step down needed to take

place. You need to go from morphine to the next lower step by step until you

are on the last step..that's when the rls medicine should have been started. It's

just my opinion after reading hours upon hours of forums, articles, talking with

other people in other forums.

[Trubs in reply to Jaynielynne]

I did come off the morphine really slowly over a five month period, reducing one step every two weeks. In the beginning it was easy but as the amounts got lower it became more difficult and the last few mg took ages. The RLS began about 3 months into the withdrawal. I probably should have gone to the doctor ages ago about it but kept thinking that it would stop after I stopped the morphine altogether as I had been told that the withdrawal symptoms would continue for about two weeks after my final dose. It is now three months since I came off and five months since the severe RLS began. Going mad!

[Hidden]

Coming off morphine i doubt is making your RLS worse. There have been lots of discussions on this forum where RLS seems to become worse after operations. I see you have been taking quinine, that will not help RLS and should only be used for malaria, folic acid doesnt really help much either. You need to see your doctor and discuss what you can take to get relief from the RLS now its become worse. Here is a website for you to look at, the treatment page has a list of meds for RLS, it also list meds and OTC meds that can for most of us make things worse rlshelp.org disregard the blood pressure med for RLS, they are not used for RLS. Good luck. Oh, and do what jumpylegs said, get your ferritin level checked, if low you might benefit from taking iron pills from your doctor.

[Trubs in reply to Hidden]

The only reason i'm taking the folic acid is because one blood test showed it to be marginally low. It is the doctor that is (ineffectually and unsympathetically) looking into it. She doesn't understand how desperate I'm getting. Feel like hitting her!

[BobM]

Get back on the Morphine, I use it too suppress the pain and irritation and I sleep far far better.

Kindest

Bob

[Trubs in reply to BobM]

Not sure that a) I want the addiction again and b) that my doctor would be happy to prescribe it again! I still have some left but when that's gone I reckon it would be gone.

[BobM in reply to Trubs]

Well don't worry about an addiction, i have been taking it for 6 years and am no more addicted than i was in the beginning. I understand that if you are not getting 'high' then addiction is unlikely? I have a fridge full at times and don't take any more when I have it than I am prescribed. My Dr even accepts that some days I don't use it if I don't need to and 'top' up on days when RLS is worse.

For my part I would rather be free to live my life and if a low level addiction were the cost I would pay it...........I think.

If you Dr wont, then change your Dr to one who understands RLS and the issues and the amount of life it steals.I had too

Kindest

Bob.

[Trubs in reply to BobM]

Am thinking of changing my doctor. She doesn't listen and even, at first, insisted on calling the rls, "cramps" and just wouldn't listen when I told her it wasn't cramp. Why do doctors always think they know everything?

[nightdancer in reply to Trubs]

You DO need a different doctor. For one thing, we ALL know that RLS is not muscular cramps, and quinine is going to nothing for RLS, because it is neurological. I take pain meds for many chronic pain issues, and extended release morphine is one of them. In the US, Quinine has been out a strict restriction by the FDA because it can literally cause heart damage. It is on their web site, and the FDA (Food and Drug Administration) says it is to be ONLY used for malaria. It is not available over the counter here any more, and many over the counter "leg cramp" formulas have had to be changed. It is a "black box" warning, which is one of the strongest warnings they can put on a med. I have had several surgeries, have been taking morphine, same dose for over 10 yrs, never have upped it, which would be a sign of addiction, or the lesser evil dependence on the drug. Back to the surgeries, 3 back surgeries (the last one was last NOV), 2 n3ck surgeries, a knee surgery, plus I broke my back at the age of 14. after every surgery my RLS has "ramped" up. It has been 4 months since my surgery, and my RLS is going nuts, even with all my meds. I highly suggest you check out the treatment page on the web site Elisse listed. There is the list of meds that help RLS, and the list of Drugs and Foods to avoid, which is quite lengthy. You can also email the doctor, who does nothing BUT RLS, and is on the medical advisory board for the US RLS Foundation. The only info on that treatment page that is old and outdated is the blood pressure med section. Since that was put on the web site back in 1996, they have found out through many studies that blood pressure meds do not help RLS, they don't make it worse, they just do not help. I hope this helped you. There are no big studies about surgery and RLS, but it is fact of life in every group I own and every group I am in. I am going NUTS with my RLS, it is 24/7 now, and now even my pain meds do not help all the time. IF you have never been on ANY RLS meds, the Parkinson's meds at a LOW dose is what to start with. Your doctor is also nuts if she is calling RLS "cramps". That is a telltale sign that she knows nothing about RLS. Ask to see a neurologist. Keep asking questions. I drop in now and then. I live in the US, and my real name is Donna, so as not to get me mixed up with others who have similar screen names. Mine is Nightdancer, one word, no hypens or anything else. Just nightdancer. lol

[Trubs in reply to nightdancer]

Thanks. The support I've been getting is fantastic and heart warming. I am awake now with the damn thing. It is 2.30am in the UK and I have been awake for some time. I have just taken 60mg codein with 1000mg paracetamol (a prescription drug in the Uk) as it does seem to help for a couple of hours. Am now waiting for it to begin to work. Will go back to a different doctor armed with info from that web site, and demand some meds! Will stop the qui ine too as it can also cause kidney damage.

[nightdancer in reply to BobM]

Hey, Bob, how are you!? Been a long time! Donna/USA

[BobM in reply to nightdancer]

HiYa Donna,pleased to see we agree on Morphine and addiction. Doing OKish, you?

Bob x