I recently posted I'd had a knee replacement 1st march . I've had 2 before no problem . This time my Rls has gone mad . I've had all the normal drugs and been on bupromorphine for 3 to 4 yrs no problems . Been great. Until this operation . I also have hurt the tendons etc in the same leg on my outer upper thigh . Doc says from the strain of limping for the last 14yr that I've been havin knee problems . Anyway I asked to up my bupro to see if it would help with the pain amd rls . He gave me a 5mcg slow release patch . . First 3 weeks didn't really do anything and still needed my pills also had rls in mornings . So had 2 morn and 2 eve plus patch . Still had symptoms . So asked for a higher patch got 10mcg seems a bit better only topping up with one pill morn one pil eve . Not ideal . I saw a different doctor from my long term one who I feel is not really interested anymore . This lady when she realised I'm on the patch the pills and sometimes zapain !! Was not happy at all as he shouldn't have prescribed it with the other opioid drugs . I said this has been so for years . Obviously I've only recently started the patch. Tbh I'd like to come off the patch and c if my pills work . Once the inflammation calms down on my knee hopefully it ll go back to normal . She said he should have tried pregablin or gabapentin . So I've made an appt to see him . I don't know if uve watched the Documemtry/film Dopesick ....I was in shock at how bad that situation was it was awful how they treated people on Oxycontin which I had a bottle of in hospital for my knee but wasn't takin bupromorphine whilst in hospital . I did take zapain though as was in alot of pain . She said there's a possibility I could accidently overdose on these 3 opiods ! Which I must admit scared me . Also I had to stop takin my iron 2 weeks b4 operation which has lowered my levels . I've had my blood tests done but not too sure about reading them . New doc said I was low in some so to take everyday for a few weeks ?? Has anyone got any help or advice on Amy of this . I have just started taking collodial gold as I'm willing to try anything !! I have depression amd anxiety and it does seem to be lifting my mood . I've lowered my sertraline from 150mg to 100mg in the last 3 weeks . I know sertraline isn't a good one for rls but I've been on it for a long time . It would be good to change to one that doesn't affect rls and see what happens . Sorry for long post
Doctors /drugs and blood results - Restless Legs Syn...
Doctors /drugs and blood results
I am glad your new physician is going to get you off three opioids! Yes, the documentary you watched highlights real concerns. I will let more knowledgeable make other med suggestions. Read through old posts here. Thinking of you.
Buprenorphine prevents any other opioids from working so the zapain is a waste.
Your ferritin is high but taking the test after the operation when you have inflammation means this is not accurate since inflammation raises it. The only one I see is low is your serum iron. So yes you probably should take iron.
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months and at least 6 to 8 weeks after the inflammation is gone.
For depression and anxiety I recommend trazodone.
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
Hi thank you Sue sorry for late reply was my daughters Hen nite tonite so been busy. I take 75 mg levothyroxine in morning wait half an hour and take 100mg sertraline 2 vit d tablets , vit b complex 1 tablet , magnesium 400mg citrate ,400mg malate and 1000mg glycinate it's a 3 in one tablet. I was taking a multi vit but am going to take that later now with my iron . One bupromorphine 0.8mcg. 4 hours after that I have to take coleveslam 4x625mg for BAM . 4 hours after that I take progynova 1x1mg and a folic acid tablet 400ug. And 1 x 0.8mcg bupromorphine. Just started to take iron ferrous fumarate later in night b4 bed as I sleep late and the multi vit . For the last 2 months I've had the bupro patch was 5 now 10 mcg . If I have more pain I would take zapain as needed . How long would I need to wean off sertraline to take trazadone ? Oh I take the iron with orange juice . The Coleveslam has to have 4 hours either side with no pills or it doesn't work its a bile binder I developed this condition in 2017 just b4 my first knee op . I'm am also trying out collodial gold as reccomended by a pain clinic I took myself to . He reccomended the magnesium to and I've recently put myself on b vits and folic acid just to see how it affects me . The gold seems to be lifting my mood and clearing my head and giving me a bit more energy . As I've been spending alot of time in bed wallowing a bit. I have also tried DMSO topically which does help pain u do have to be careful with it . To be honest like alot of us we will try anything to be rid of RLS . Thanks for ur advice and time anything else u need ro know just ask . It's underactive thyroid I have also
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium.
Progynova which is an HRT makes RLS worse for most.
You can probably switch directly to trazodone but ask your pharmacist or doctor.
Thank you . So am I taking the rest of my meds ok
Yep.
Do u know of an hrt that doesn't affect rls please ?
Unfortunately, it would seem that the operation has triggered the worsening RLS.As you are also experiencing pain, you've upped the dose of opioids. The problem is that opioids quickly become ineffective for pain, you develop tolerance and have to up the dose.
Taking Oxycontin in hospital for a month and then stopping can trigger RLS as opioid withdrawal symptoms.
I think you need to get your iron levels up asap and consider replacing sertraline slowly and safely with an anti depressant that is safe. Trazodone or Bupropion.
And stay on the 10mcg patch. If it was controlling your RLS before the op, it will hopefully start to control it again.
You may have a tough 2 months as your body adjusts to having Oxy and zapain out of your system, but stick with it.
If the pain and RLS are unbearable after 2 months, you can ask for a review.
Have you considered cannabis for the pain?
Hi thanks for answering . I only had Oxy for around 10 days I wasn't on my bupro tablets in hospital . I wasn't on the patch til after the operation as the doc thought it would help the pain in my thigh plus rls. The doc I saw the other day wasn't happy with all the opiods I'm on and reccomended gabapentin or pregablin ...nerve blockers she said as it would help my knee , thigh and I have neck pain ....the joys of getting old lol. I have tried cannabis made by a friend in liquid form but don't think it did alot . Ages ago I spoke to my doctor about medical cannabis but the bupro has been so good for 4 yrs I was happy on it
Totally understand. But if you can take the lowest dose buprenorphine pills to cover RLS, you could use cannabis for the pain on an 'as needed' basis.Gabapentinoids do help pain and RLS, but aren't effective for many of us.
Which cannabis do u use there are so many ? Can't believe I just asked that lol
I use Althea Champlain cannabis Oil with 20% THC. It's expensive, around £3 a day if you use it daily.Lyphe Clinic or Curaleaf clinic are the two clinics I use. You pay around £50 for initial consultation and then they get your GP records.
Is that England or USA . I'm in England. 20 the Is alot isn't it . I put my dog on some when she had a cancerous lump it shrank the lump a bit and she perked up and had another year when vet said she'd only have months and wanted me to pay thousands to a specialist vet !!
Have you found the trigger points for rls🤔
I've had it since a child it's just got worse the older I am . It's there constantly now but the bupromorphine was helping before my operation
Wow, I went through exactly what you are going through. I had my knee replaced in early April. The restless legs was worse than ever due apparently, to inflammation which can be a trigger in RLS. The Oxycodone I was prescribed helped a little, but only lasted for two hours. Unfortunately though, I could never sleep when I was taking the oxycodone so I didn’t even finish the bottle.
I also developed sciatica or bursitis in that same leg, which is still bothering me more than the knee ever did. For a while there, I had to double up on my Ropinirole for the restless legs, but now that the inflammation has gone down tremendously, I am back to my .25 mg which I only take at night.
I was also depressed and discouraged. The knee is doing ok but I still have the thigh discomfort whenever I sit or lie down. Hopefully, in time it too will heal with the exercises and stretching I’m doing. Good luck!
Just be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
You would be wise to get off it now while you are on a low dose as once you have augmentation it can be hell to get off it.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so ,which since you are only on .25 you might want to cut it in half. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. Pregabalin is more expensive than gabapentin in the US. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...
Oh wow thanks for answering it's good to hear from people who have similar with the knee replacememt . Thing is I had 2 replacements in my other knee 2017 and 2019 and no problem with legs so wasn't expecting it this time . To have that in ur calves , pain in knee and pain in thigh it's like chop the leg off lol . I'm hoping it will subside soon my op was March 3rd . The Oxy didn't do much for me this time and I had to fight to get it . Whereas the 2 ops b4 I was just given it. I still have some left to only took it for 10 days maybe. Its so frustrating
I also had a knee replacement on my other knee back in 2017. No problem whatsoever. This one was with a different doctor in a different state. Don’t know if that makes a difference or the fact that I was 67 then and 72 now. Guess we’ll never know.
I know it's strange isn't it. I had a partial replacement in right knee that wast cemented in well enough so became loose . Took over a year to convince them it wasn't right the original surgeon told me there was nothing wrong and I had to put up with the pain !!! I complained about his attitude when I got a second opinion and found out it was wearing away the bone ! After 4 yrs I got some good compe station but that didn't make up for the pain I suffered. . I then had a full replacement which went well and no rls problem . Because I'd walked with a limp for so long it had put pressure on my left knee so got that done this year . Rls is murder now I'm 59 but feel like I'm 100 !!
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