Surviving RLS when on bedrest

[Averys-meema]

I’m struggling so badly with RLS at the same time as experiencing knee arthritis flare up awaiting knee replacement. It’s maddening to be told to elevate your leg and ice it when you can’t lay still for just a few minutes. And that standing up is only relief and it’s too painful to stand. My neurologist just switched me from Mirapex to Requip with klonopin at night. I’m still miserable. Now he’s adding Sinemet. I feel like a drug store. It’s becoming a full time job to manage medication. Also worried about dependency. How do I manage my knee issues specifically bedrest, while having RLS issues? Has anyone experienced this?

[Joolsg]

I feel for you. I’m shocked that your neurologist put you on requip after you augmented on pramipexole. As soon as you’re out of hospital and recovering, you need to discuss getting off Requip & onto either alpha2delta ligands or a low dose opioid.

Did you try to see someone at Johns Hopkins?

Wishing you a speedy recovery- hopefully they’ll give you low dose opioids.

[Averys-meema in reply to Joolsg]

Surgery won’t be until May. This dr has been referred to me by everyone as the best. He’s a neurologist who specializes in movement disorders. I was shocked too based on everything I’ve read but listening for now. Johns Hopkins is very far away and with covid and I’m on crutches, not happening any time soon. I feel hopeless

[PerniciousRLS in reply to Averys-meema]

apparently this doctor knows nothing!

[Hidden in reply to PerniciousRLS]

(S)he is probably just ignorant in treatment of RLS. (S)he must have some good knowledge of movement disorders if people think she is the best. It is not really a movement disorder but a disorder of sensation. I am lucky enough to have a young neurologist who understand RLS, but it probably was not taught much in school for most physicians especially older ones.

[lorrinet in reply to Averys-meema]

I should have had my second knee replacement, plus a hysterectomy, both by October 2019 but my very high blood pressure meant they both had to be postponed until it was under control. Then guess what? Along came Covid and my knee-replacement is so far down the road now it's out of sight.

When I had my first knee surgery, some 13 years ago, I was already taking opioids for RLS so I had none of the problems with enforced inactivity and bed rest. Without them, an already painful and traumatic procedure and hospital stay would have been a horrific experience.

Do try to get some opioids from your doctor, they will make a huge difference.

[Bruxelles]

Hello, I can sympathise with you as I have the same problem i.e. awaiting knee replacement and having RLS. I’m dreading having the op as I wonder how I will cope whilst in hospital and confined to bed. At least at the moment I can get out of bed, like last night at 3 a.m., when I want to or rather need to. I have a high pain threshold luckily which means I can walk around a bit and find even sitting as opposed to lying helps. Good luck with your op and hope you won’t have to wait too long.

[Dunedinite in reply to Bruxelles]

I doubt you will be kept in bed as these days they want you up and about as much as you can. I was given a skateboard and used to put my foot on it while sitting in a chair beside my bed at night and moved my leg back and forth. This helped me get great movement in my knee as well as not having to lie in bed all night in the hospital. I had it several years ago but they are probably even better now at helping people cope these days. It was just something to do instead of lying miserable in bed with my RLS.

[Averys-meema in reply to Dunedinite]

Thank you

[Bruxelles in reply to Dunedinite]

Thankyou for the tip - I think I’ll try and borrow a skate board when the time comes! We’re there no objections to you having a skate board in hospital?I hope your RLS is somewhat under control although like most of us I expect you are still searching.

[Dunedinite in reply to Bruxelles]

It was the hospital that gave it to me! A very prestigious private hospital, and they had a skateboard especially for this. My knee has now got total bend and I put it down to having done this from virtually Day 1! No my RLS still isn’t under control and the lack of sleep is nearly driving because mad!! Not sure what to do next.

[Averys-meema in reply to Bruxelles]

Thank you. Good luck to you too.

[Bruxelles in reply to Averys-meema]

Thanks. Hope you’re getting aAlong well.

[slim1953]

I know the feeling. My doctor has given me oxycodone hydrochloride. It helps the RLS and is a pain killer. I have spinal stenosis and sciatica and waiting knee replacement

[Averys-meema in reply to slim1953]

I have same issues. Was undergoing pain management for my back but then knee became the priority.

[GardenGal1]

After augmenting on Requip, my neurologist tried everything he could think of. Nothing worked. He FINALLY took Dr. Buchfuhrer’s advice and prescribed low level Methadone. It was like a miracle. I’ve been taking Methadone for 11 years now, and it is still the only thing that calms the RLS beast. I’m at home right now recovering from hip surgery. The Methadone, plus the Oxycodone for post-op pain make it possible to rest instead of constant pacing. I had the other hip replaced 1.5 year ago. I hoped the oxycodone would take care of the RLS, so didn’t request the Methadone. It didn’t. I stood and thrashed the entire night after surgery in total misery, keeping my roommate awake...praying for me!! I didn’t make that mistake this time.

I certainly wish you had a doctor who would prescribe low level opiod to get you through this surgery and recovery.

[Hidden]

I know the pain that you are going through. I am 67 y/o man and have had two knee replacements, a shoulder replacement and then a redo of the shoulder replacement 19 months later as I got a joint infection from a tooth that needed a root canal. I am now facing a hip replacement this month. I hit the jackpot on osteoarthritis. Seems to run in the family, plus I weighed 110 lbs. heavier until 4 years ago. I am sure lugging that weight around all my life severely damaged my joints.

When I knew I was on any period of bedrest, I had a frank and thorough discussion with my physicians in advance about RLS and the fact that I would need to continue my treatments when I was in the hospital. Otherwise, if my RLS were to manifest itself, it would well be mistaken for mental agitation and I may injure their surgical work. This was never a problem with the outpatient surgeries, but was a problem when I had to stay overnight. Normally, that works well for me, however not always.

Last August, when I had the shoulder redo, the hospital would not give me my appropriate methadone dose. I have used them for a number of years with great success. Florida underwent some very draconian measures to control the opiate abuse epidemic. A lot of what they did was political in nature and just hurt legitimate patients. When I told the nurse that they were not giving me the right dose, he just marked it down and said I refused the medication. Of course, with the COVID-19 restrictions, my husband was unable to visit or I would have just had him bring it to me. As my RLS began to kick in, I again spoke with the staff who basically thought I was a junkie. I was on 15 mg methadone twice a day (I have since moved it to 10 mg 3 times a day - same daily dose which covers me much better). They wrote methadone 10 mg on my paperwork but did not say that it was one and a half tablets tablets at a time.

Here I am, groggy from surgery, and I get a call at 10:00 PM from a pain management physician I do not even know who indignantly told me that he checked the state database and said that I only get 10 mg tablets. The doctor apparently did not know that methadone does not come in 15mg tablets here in the USA. He then proceeded to list off all the RLS medications that have failed so many of us with RLS and I should be on them instead. I explained that they have all failed and my neurologist and I have worked this out several years ago.

I asked him how many pills were dispensed to me for 90 days at 10 mg twice a day He said that would be 180 tablets for a 90 day supply. "Can you please tell me the number of 10 mg tablets that were dispensed?" He told me 270. I asked if he could divide 270 by 90 and tell me how many tablets a day that would be." He sheepishly said "three". I pointed out that that is 15mg a dose and they do not make 15mg tablets. He then rang off and the next thing I know a nurse shows up with the right dose.

I had already called my husband who was on the way to pick me up as I was going to go home against medical advice. I was not going to put up with the RLS, a fresh surgery and methadone withdrawal (no matter how mild it may have been). I had to call him back and abort the mission.

The thing to remember is to continue to take the right doses of whatever medication you are on. Don't worry about feeling like a walking drug store. You would not think the same thing about your medications if you had resistant high blood pressure, diabetes or cancer. This is a serious illness. I have known one individual who took her own life rather than dealing with this day in and day out. Impress upon your physicians this issue. Tell them you may need a stronger drug like an opiate temporarily, not for pain but the RLS while you are on bedrest. Take the RLS information on opiate use. Highlight important areas as (s)he may not have the inclination to read the whole article, but leave it anyway.

Some of the other things you can do. Be up as much as you can. Sometimes going to from lying down to sitting can help. Make sure your diet does not contain any triggers. We all are different. My food triggers are sugar, white flour, heavy carbohydrates and caffeine. Overeating is also a trigger for me. While I can eat small amounts of white flour normally, I scrupulously avoid them in the evening if I am going to be on bedrest at the movies or in a car for a long period of time. Use heat or cold whichever helps. Cold is better for me including a cold room. Heat triggers my RLS. I can cover up but the cold atmosphere does help and makes me sleep better with plenty of blankets arranged so I can stick my feet out if they bother me.

Good luck to you and good luck on the knee replacement. I love my new knees. I worked hard in rehab and always made sure I took the pain medication before therapy. My sister also had a knee replacement. One of her well-meaning, but ignorant friends told her not to take the mild dose of an opiate that was prescribed before therapy as her "would get addicted" to them. As a result of inadequate pain treatment, she could not do the post-op physical therapy, was in pain and had a poor outcome. I talked to her. She said she had a number of the opiates left. I explained that she would not get addicted to them taking them as prescribed on a short-term basis. She got her physician to authorize another round of physical therapy, was able to do the exercises, and is now back to normal with her new knee.

You can survive this. Worry about it one day at a time. Sometimes it is one hour or one minute at a time.

For what it is worth . . .

Jerold in Citrus Park, FL USA

[Averys-meema in reply to Hidden]

Thank you so much for your thoughtful response. I am very emotionally fragile right now and your reply helped. Actually made me cry. It’s hard to hear how everyone thinks my treatment is wrong but I’m in no position to search around for someone else and can’t deal with knee and RLS changes right now. Too much going on at the same time. Unfortunately I have to wait 3 mos for the knee surgery (complications with my case). If not for covid and my knee I would head up to Johns Hopkins. Family also doesn’t really understand. They want me to listen to the doctor and give meds he’s giving me a chance. I will take your advice about the opioids during rehab. My sister had both knees replaced and told me the same thing. Normally I’m a very strong, confident woman who handles everything. This situation is testing me. Sorry to hear about suicides but I never thought I’d say this but, I get it. I’m not ready for that but it is maddening and people don’t understand. Even loved ones who mean well. Hell, my daughter is an ER physician and just wants me to give meds a chance to work. Gets annoyed when I question it. Thanks again.

Leslie in Concord, NC USA

[Hidden in reply to Averys-meema]

Thank you for your nice comments. It comes from years of experience with this nasty malady. Again, print copies of the opioid use guidelines from rls.org and give one to any and all of your physicians and pharmacists so they will understand. Remember that we are all good people with a horrid disease and we deserve the best treatment possible.

[oldfidgetlegs]

Me too! My knee has been up like a balloon for a couple of weeks (haven't pushed for another x-ray as I don't want to visit the hospital right now) and getting down to the floor so I can thrash about is only possible by collapsing onto the sofa and lowering myself down. Getting up again while keeping that leg straight is just as hard requiring upper body strength while I push up on my arms. FFS!!! I've tried most things, wrote to my GP and Consultant before Christmas enclosing a copy of Dr Buchfuhrer's excellent medical text-book (cost £35) and have heard precisely nothing from either of them. My biggest dread is being hospitalised. Last time I was rebuked by the nursing sister for trying to get up, but I was desperate and at screaming point. So, I totally get where you're coming from, at least you have doctors who are making an effort. I think mine have given up. Hopefully you'll get some really useful advice re medication from others here who are incredibly knowledgeable and helpful. Good luck with the knee!