I had a left knee replacement surgery April 10th this year. My right knee is also “bone on bone” from osteoarthritis and I’m dreading getting a second one as its been a rough recovery, and the RLS return has me worried too.
4 months out I’m getting stronger week by week although I’m definitely not pain-free. Yet thankfully the worst of it is behind me now. Except ….I’m now also suffering from dreaded RLS again at night!
Not every night… but often. More than not. RLS symptoms started about a month after the TKR surgery (I was weaning off Oxycodone during that time- but truly could not have tolerated the pain without it.)
Blood tests: In late June My ferritin was 33 and iron saturation 49% .
so…My GP doctor recommended I take daily iron supplements but she did not recommend an infusion. Not sure why as we discussed the Mayo Clinic RLS protocols.
Does anyone know if my iron saturation result was considered normal, so would iron infusions not be covered by my insurance ? even though my ferritin was too low at 33 (for RLS), because my iron saturation was high ? Re-reading the Mayo Clinic protocol did not give me any clarity on this as it seems I only have one of the criteria required for infusion to be approved ?
right??
I have venous insufficiency as well (and varicose veins) so I also wonder if some of the discomfort in my legs is from that - and not from RLS ? It’s hard to tell
Yet I had the insuffiency before the surgery and did not have RLS symptoms or leg pains/discomfort like this then !
This now feels exactly like way I felt after 2 emergency gallbladder surgeries over 2 years ago when RLS was triggered for the first time in my life!( It came on in second or third week also after weaning off oxy)
RLS lasted for 9 horrible months back then -then finally mysteriously improved and then went away entirely and didn’t return until this knee surgery Two + years later!
Then , I took iron bi-glycinate daily (Ferrasorb) as my ferritin was low- 30 I think?)
still after all those long months on iron my ferritin level only went up to 55 !Yet in spite of that number my RLS symptoms eventually went away. I didn’t have an infusion then nor was one ever recommended one.
I’m now taking the same Thorne brand FERASORB which is 75 mg iron bi-glycinate with vit C at night- 2 hours after meals usually. About 3 weeks ago I switched to every other night dosing as recommended on this site. I don’t have RLS symptoms every night which is confusing to me, but I get it often…. Several times a week in general - so I’m often sleep deprived. I frequently spend hours of tossing and turning in bed due to the strong impulse to move my legs. I’m often better in early mornings.
Sometimes 2 Tylenol help me sleep so I think maybe post-op pain and arthritis pain in knee -and inflammation - is contributing to sleep issues as well.
But I just don’t know … nothing is consistently helping yet.
I’ve been trying some natural sleep supplements with some improvement it seemed to me at first…but it’s so incredibly random I don’t know what’s helping or hurting - or neutral?! I took 250 mg pharmaGaba (Thorne) and “cortisol manager” (contains ashwaghanda l-Theanîne and other relaxing herbs)For a couple weeks I thought these supplements were helping at first, but suddenly - not! In fact I’m now a bit worried … could the pharmagaba (or something else) even be triggering RLS later in same night?? Is this even possible ? I think I’ve heard that natural GABA could have an augmentation effect on some people ? Yet it helps many others…??
I’ve had some success with better sleep with valerian and other herbs for sleep but nothing strong enough to help me sleep all night.
I want to try CBD/thc gummies soon
I think I have RLS and pain - so it’s complicated
Thanks for any advise
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49% iron saturation is high. You don't want it to be higher than 45% although some say 50%, so no an iron infusion is not appropriate.
The supplements you took would not make your RLS worse.
Inflammation can make RLS worse although I would think the inflammation would have subsided by now from your operation although arthritis and your bone on bone can certainly cause inflammation.
For sleep I recommend Lunesta which is what I take.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
It seems the link is Oxycontin and withdrawal. Any opioid withdrawal can cause RLS, but it usually only lasts 3 months maximum.Inflammation from the operations can also worsen RLS.
I agree with SueJohnson that an iron infusion is probably not possible as your iron saturation is high.
I suspect it will settle with time.Are you taking any anti depressants, sedating anti histamines or statins, beta blockers or PPI meds?
If you can manage on the occasional low dose codeine or cannabis gummies, it may well settle soon.
If it doesn't, you may have to consider pregabalin or gabapentin.
interesting re: the oxy-weaning trigger for RLS. I already wondered about that.
I tried to wean more slowly too but maybe not slowly enough?
I think it’s actually been around 2 or 2.5 months since the RLS started, as it was 6 -8 weeks post surgery that I weaned off of Oxy. So if 3 months is the usual time for it to settle maybe there’s hope in next month🙏🏼
No, I don’t take any of those drugs that you mentioned are RLS triggers.
I also made sure that the anesthesiologist didn’t give me the wrong anti nausea drugs
My gp doc at the time my insomnia and RLS started post surgery 2 months ago wanted me to try 100 mg of gabapentin nightly to see if it helped my insomnia & sleep issues including RLS. But it made no sense to me that this dose would work for RLS, as I know the average doses have to be much higher! Have you heard of this low dose gabapentin being prescribed for sleep, off-label? Or for pain?
I truly would much rather try CBD/thc gummies first
Lunesta sounds possible too, thanks for that suggestion Sue. I’m more wary of trying Ambian.
Sue you mentioned collagen being a trigger for some. I do take collagen supplements regularly, almost every day now, with breakfast or lunch . Should I stop ? Even though I took collagen long before my surgery and had no side effects and no RLS? I think it helps my skin, hair and nails and joints as it’s supposed to help arthritis. I would stop if it’s important.
I enjoy a small glass of wine -or two at most-with dinner, most nights - a ritual which I’ve enjoyed for many years with no problems. It has never ever triggered any RLS.
Post last knee surgery I didn’t drink any alcohol at all for at least 8 weeks when I was still weaning from oxy. RLS started while I was not drinking at all.
Ive used low dose bioidentical hormones topically or sublingually in compounded form, for many years without any RLS issues at all. They’ve been life savers for me for many very complex reasons - including severe heart irregularities. I’m not able to discontinue these
Finally…Have you heard if wearing compression hose can help prevent RLS in those with veinons insufficiency ? Ive avoided wearing due to the very hot summer we are having. I’ll make an effort with this if necessary.
I learn a great deal from this knowledgeable group…thank you! grateful
By the way on the lunesta check out GoodRX as using their discount card makes it a lot cheaper than my insurance. On the collagen supplements, you can stop taking them, no weaning needed, to find out. Compression stockings help some. Just try them at night.
In thinking about it I'm not sure you should be taking the iron with your saturation that high.
707Twitcher wrote on another post 4 hours ago to someone else " I am one of the unlucky few who has a saturation % close to recommended maximum (45% - ish), so I cannot supplement iron even with low ferritin."
Oh ok . I’m assuming that it’s a rare combination then? (Low ferritin, high saturation) I read somewhere that a number of things can affect the lab results for iron panel
I am 100% convinced that my RLS is triggered by post surgical inflammation. My RLS is controlled with 10 mg of methadone. After each joint replacement my RLS returns. I’m scheduled for a knee replacement in two weeks and I’m dreading the return of my symptoms. This period usually lasts about 6-8 months. May I ask why your TKR has been difficult?
Thank you for sharing your story. I’d been wondering for some time if surgery in itself, (or certain surgeries?) might be an RLS trigger or flare for some people, since I had the same thing happen to me exactly after gallbladdder surgeries. Same flare after my TKR. It’s eye-opening for sure that you have had a similar experience. However I had to have a sinus surgery 3 months before my TKR (which was quite painful), and I did not have an RLS flare after that one! I also took opiates afterwards, but for a much shorter duration. It’s a mystery!
Actually my TKR surgery went very well from the point of view of my doctors and my PT. I found it very challenging and very painful. I worked hard to get my range of motion bach quickly and a lot my strength. Overall I’m recovering well and on schedule. I still have some pain and numbness and stiffness and fatigue etc etc yet all this is considered completely “normal” four months after this major surgery, especially since the full healing and recovery after a TKR takes 6-12 months. Not sleeping well since the surgery and a return of dreaded RLS is part of my frustration, and fear … it’s normal not to want to go through more suffering again! But I admit that the chronic worsening pain in my arthritic right knee is slowing my progress down a lot with my surgical knee recovery - with everything, including exercise and walking. Like you, I also dread having to go through this ordeal all over again … . But I know it’s probably necessary and important for my overall health and mobility… as my arthritis is not miraculously going away! I’m trying to be brave, and I will get there soon, I hope,
I wish you all the best with your upcoming surgery. Total Knee replacements are a truly remarkable feat of science, and the human body’s ability to heal is even more incredible !
Have you considered trying PRP for your other knee? I was looking at knee surgery but really didn't want to deal with the RLS and had a PRP injection instead and now am gradually healing and my knee does not hurt anymore. I am having an MRI to look at the progress soon and will keep you posted. I know it is expensive and possibly unavailable depending on where you are, but was effective for me with osteoarthritis and a torn meniscus.
Hi…yes PRP sounds very intriguing … I’m happy for you your pain is gone! Wow ! I didn’t know if it could help bone on bone knee arthritis. However… do you know ?
It is available here where I live but I don’t know the cost as I assumed I was behind this kind of help ? Are you willing to share what it cost you?
Sure, I had two injections, three months apart. Each one was 600 dollars. But all PRP specialists are not the same. You need to research for the good ones with lots of reviews and personal contacts. Some do it well, some not so much, make sure they are really experienced. I am in the US in western Washington, where are you? I was not quite bone on bone but the doctor said he treated bone on bone.
I am sure you can find a great regenerative medicine practice in Portland that does PRP. I am in Bellingham and my wonderful doctor is Dr. Borys. I will ask him at the end of the month if he has anyone to recommend in Portland.
it was suggested I reply to you and I’m very sorry for all the things happening to you however I don’t think I have any relevant experience from which to offer advice. I haven’t had any surgery and I am prescribed Oxycodone to help control RSL rather than as pain relief. Very best wishes with all you’re going through. Good luck! Tree stump
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