HELP, PLEASE??!!

[LanaCSR]

I just had a total knee replacement. For 3 years now buprenorphine has helped, but today I took hydromorphone for pain that my surgeon prescribed, Nexium that my family doctor recommended to take to keep the aspirin I have to take postop to keep from getting ulcers, and cyclobenzaprine. Unfortunately, I can't walk around much to keep the RLS from bothering me. Can anyone help me figure out if it's something I'm taking that could be causing my RLS to act up?

[SueJohnson]

Cyclobenzaprine is not a problem. It possible that nexium is. However it is well known that any shock to your system like surgery can make RLS worse so that's the more likely problem.

[LanaCSR in reply to SueJohnson]

Thank you, Sue. How am I going to get through this? 😭

[SueJohnson in reply to LanaCSR]

You might ask your doctor to give you a higher dose of hydromorphone which is a very strong opioid.

[LanaCSR in reply to SueJohnson]

I wonder how long it will take for it to improve if it is the surgery that's causing this.

[SueJohnson in reply to LanaCSR]

I'm afraid I don't know the answer to that one.

[Moonwalker1967]

Yes, surgery makes it a lot worse. I had bad RLS when I had my thyroid gland removed. Had very mild RLS before and from then it went worse every year.

[ChrisColumbus]

Esomeprazole (Nexium) could be a problem: some have found switching to Gaviscon helps, but check with your doctor. If you were given an anti-nausea treatment as part of or as follow-up to the surgery this could trigger RLS.

[Jumpey]

If you were given anti nausea meds after surgery this could trigger RLS.Zofran is a safe choice. Over time Nexium could be a problem.PPI's inhibit mineral absorption including iron.I hope it settles soon.

[Joolsg]

Can you try medical cannabis? It would help the post operative pain and might help the increased RLS. The anti nausea med routinely given during anaesthetic triggers RLS so it might be that.Nexium could be the issue so try another stomach remedy like gaviscon.

Many people report worsening RLS after any bone surgery. It can trigger RLS in people who have never had it before.

Hopefully the RLS will ease off within the next 2 weeks.

[LanaCSR in reply to Joolsg]

I was very careful to make everyone aware that Zofran is the only anti-nausea med I can take while I was in the hospital. Unfortunately, I don't think medical cannabis is legal in my state. I decided after taking the Nexium yesterday morning that I wouldn't take it this morning to see if that makes a difference. I took it at 7:15 a.m. yesterday and it is now 7:30 a.m. (it is a 24-hour formula), and I just woke up and my legs are bothering me now. 😭 So when you say hopefully it will ease off within the next two weeks, is that timeline something you know about or found with research? My fear is that this operation has increased my RLS to the point to where it is no longer manageable. I'm really scared. It took me years to find out that buprenorphine works great for controlling my RLS symptoms, and I fear there is nothing else for me if this surgery has increased my RLS symptoms permanently. I also will need to have the other knee replaced after I recover from this one, and seeing how my RLS is acting up after this one scares me to have to have the other knee operated on.

[Joolsg in reply to LanaCSR]

The only other thing I can think of is that the hydromorphine has interfered with the Buprenorphine or vice versa. Buprenorphine is used to get people OFF heroin and morphine but can displace and block other opioids from the opioid receptors. This can cause opioid withdrawal, the main symptom of which is RLS.

Are you still taking the hydromorphine? Maybe as you come off it , the Buprenorphine will start to work again.

I really hope it settles.

You could email Dr Buchfuhrer or Dr Berkowski. Both respond to emails.

Dr Buchfuhrer email is

[e-mail]

Dr Berkowski can be contacted via his website at

relacshealth.com/blog/why-a...

[LanaCSR in reply to Joolsg]

Thank you so much, Joolsg!!

[pennygates in reply to LanaCSR]

I know how you feel. I had a TKR and my RLS did increase. But once the inflammation from the op settled, (a few weeks), the legs did calm down. Know we are all different, but I hope yours will do the same. My RL has flared up after every surgery I've had, but eventually calmed down to its 'normal' level.

[LanaCSR in reply to pennygates]

Hey there! Thank you so much for your input!! That is really good to hear! It sucks that your RLS flares up after each surgery, but at least it eventually calms back down to its presurgery level. I'm not sure what you take for your RLS, but I take buprenorphine which is great except that it apparently interferes with the pain medicine prescribed for me by the surgeon after surgery. So I either had a choice, take the pain med and have my pain controlled but then my RLS would be flared up during that time or not take the pain med and stay on the buprenorphine so that my RLS is controlled. And I don't know about you, but I would rather suffer with pain than suffer with RLS. So I have chosen to stop taking the strong pain med and take only the buprenorphine so that my RLS stays under control. 🙄

[pennygates in reply to LanaCSR]

Hi, I take oxycodone for RLS, arthritis and Crohn's disease. It helps all three conditions. So , luckily, I didn't have to worry about the conflict with pain meds. Every time I get a flare up with arthritis, Crohn's, or surgery, RL raises its head. It takes time to settle, not always consistently. Very up and down. The surgeries I had more recently, were abdominal, a small bowel re- section, gall bladder removal, drove me crazy. But it passed. At the time I was scared, worrying that RL would never improve. I sense that same kind of fear in you, and hoped my experience might reassure you a little. I know we can never be certain of anything with RLS. It is notoriously unpredictable at times. I agree, it's the worst one to deal with. Stress is a big trigger with me, so it's important to try to keep a sense of calm, as it can become a vicious circle. I try to avoid sugar (a big trigger), but I have a very sweet tooth, so try to avoid eating it at night. A big help for me is an iron supplement with Vitamin C. I take iron bisglycinate 40mg, ( as 20mg isnt enough for me ), at night . Its called Gentle Iron, as it is easier on the stomach. Remember to avoid caffeine before and after as per Sue's advice. You may already be doing this.

I have two hip replacements coming up in few months. I'm not dreading the surgery as much as the RL which might follow.

I truly hope that you get some improvement soon with your legs. It is really a torment on top of everything else. Good luck.

[LanaCSR in reply to pennygates]

Wow, thank you for all the great info! And good luck with your hip surgeries coming up. I have to get my other knee replaced once I recover from this one. So, like you, I am not looking forward to it. Ugh!

[pennygates in reply to LanaCSR]

BTW, I usually set off the door security alarms going in and out of shops, supermarkets since my TKR.!

[LanaCSR in reply to pennygates]

Oh, nooo!!! I hadn't even thought about that! How do I prove that it's because of my fake knee and not anything else?

[pennygates in reply to LanaCSR]

Nobody has arrested me yet! I tell them it's my artificial knee, and they accept it. But I'm very careful keeping receipts etc. It has been embarrassing at times. Now I just walk straight through as if its nothing to do with me. Your new knee maybe made from different materials. Mine was done over ten years ago and I think its a combination of metal and plastic. Didn't mean to worry you about it. Sorry!

[LanaCSR in reply to pennygates]

Oh, it's okay. You didn't worry me that much..lol. I see my dr again before I will be setting off any alarms. So I will ask him what he says. You crack me up with your "Now I just walk straight through as if its nothing to do with me"...hahaha!! 😂

[pennygates in reply to LanaCSR]

I don't really understand it. My local Tesco is the worst. It can't be a magnet. I know that you expect it going through airport security systems as they are looking for metal. Like to know what your surgeon says. Hope you are making good progress with your new knee. All the best.

[LanaCSR in reply to pennygates]

Oh, Penny, this has been much harder than I expected. I had surgery on 6/13, and I had in-home PT 2 times per week until I started outpatient PT on 7/3, then had my second outpatient PT on 7/6. I will have outpatient PT twice a week for 5 more weeks. I've been improving, but I still can't walk w/o holding onto walls and furniture, etc., as I go by. I still sit most of the day with my compression/cold therapy machine on my knee, and I am still in pain and have a lot of inflammation that makes it hard for me to fully bend my knee. I keep thinking: Have I made a mistake by getting this done? When am I going to be pain-free? When am I going to be back to normal? How long did it take you to reach your milestones?

[pennygates in reply to LanaCSR]

Hi Lana, you sound really fed up, and you have a good right. Knee replacement is a big deal. Much more complicated than hip replacement, and it takes a good while to recover. I was 62 when I had my surgery, and much fitter than I am now ( years of poor sleep due to RL, and Crohn's). I don't know what your situation is in that regard, apart from your RL. I remember going through a similar programme myself. I stayed upstairs for the first few weeks, as I just couldn't go up and down stairs. I was in hospital for 10 days first, as I couldn't manage the 'stairs ' test easily. Things have changed a lot, now you are kicked out of hospital so soon, to recover at home. After that I had some physio at the hospital, for one session, and then given a single sheet of exercises , with little stick men drawings, to do myself at home. My knee was very swollen. I think it was about ten weeks before I was walking properly with a stick. Going up and down stairs is still a problem for me, and my joint is stiff. But I've not regretted having it done, as the pain is much better. I have to be careful how I turn, as it can be painful, and when it's cold outside it aches. The surgeon offered me another operation, but I declined. Better to put up with some minor difficulties, than risk another op. At least the excruciating pain has gone. I know it sounds bad, but it really is manageable. I can't bend it too far, and it is stiff, but it was pure agony before the op. I can walk, although my hips are now really bad, so restricted.Please be patient with yourself. Your body needs time to heal. It is still major surgery, so don't be too hard on yourself.

[LanaCSR in reply to pennygates]

Thank you! You are so encouraging and inspirational!! 😇

[Covenant1962]

I just had a total knee replacement and found that icing the wound helped calm my RLS. Some anti nausea medication can cause increase in RLS.