Im51, I had double hip labral repair and FAI surgery in January and February this year (2 weeks apart) a week after the second surgery I started experiencing benign fasciculation’s and restless legs both present quite differently. I’ve had RL before when pregnant and intermittently as going through menopause so recognised the feeling straight away the restless legs is in my arms and abdomen as well 😩 and feels crawling and prickling and like popping candy 24/7?it doesn’t stop.
The RLS and muscle fasciculation’s are now so out of control and all over my body I’m a mess.
I am having an EMG and nerve conduction done due to the surgery element and the possibility of the nerves being affected. The muscle twitching is bearable (just) but the RLS is out of control
My GP says my iron is normal I think my reading were 70 but I take a multi vitamin with iron and a whole load of supplements daily anyhow.
I’m on Topamax for seizures and migraines which I’d stopped pre surgery as the meds had given me kidney stones in the autumn and going back on when this first started temporarily helped with my symptoms as Topamax had a sedative effect and calms down nerves but it’s now worse again
I’m thinking of doubling up my dose of Topamax but it’s such a hard medication on my kidneys - does anyone else here take it? Or has anyone had results from using it for RLs as it did help initially then my neurologist told me to stop taking it as he believed it wasn’t helping at all and boom my symptoms can’t back worse than ever and now I’ve gone back on it I can’t get the symptoms under control !!
I’m at a loss did double surgery trigger this? Is it inflammatory?
I’m back to see a neurologist privately on 7th may to discuss results of tests but what do I need to ask and how do I cope long term
My Gp tried prescribing ropinerole but I have refused to take it due to Augmentation and other horror stories.
Thank you any advice would be so welcome
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Zenawarrior73
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Surgery can trigger RLS for 3 reasons - they use anti nausea meds with the anaesthetic and most trigger RLS. The surgery involves blood loss and reduces serum ferritin and the pain killers post surgery are opioids and when you stop opioids, RLS is a symptom.In your case, serum ferritin of 70uųg/L means you need to start iron supplements every OTHER night to raise your iron.
The neurologist will probably prescribe pregabalin or gabapentin, which are now first line medications. RLS-UK website sets out the timings and doses.
In the meantime, you could ask your GP to prescribe pregabalin or gabapentin.
Hi Jools I genuinely believe the surgery and opioids are the denominating factor here as I’ve never tolerated opioids well and was in oxy for 4 weeks post surgery the symptoms started as I came off them .
Thank you for your help and advice as I’m in a right old state at the minute bouncing from telling myself it will wear off on a better day to days like the last week where it’s horrific and saying I can’t cope .
It’s a rollercoaster because every time I think it’s fading a little it ramps back up again .
My sister broke her femur and was on Oxycontin for 6 weeks. She developed RLS as soon as she weaned off Oxycontin. It lasted 6 weeks but then resolved. If you can tough it out, it may reduce in severity. But do get serum ferritin checked and take iron supplements everu OTHER night to raise levels faster.
Thanks Jools it’s been 12 weeks now since I weaned off
and interestingly just been to Gp as they did another blood test in March so I called in to get those results and my ferritin has dropped to 57 from 70 on my February results even tho I was supplementing with a multi but plus iron upto 48 hours before this test
Definitely continue iron supplements. Taking every other night raises levels faster as it fools hepcidin, a chemical that blocks iron absorption if pills are taken daily or more than once a day. If you can get an iron infusion, that raises levels much faster.
Can I ask a question is RLS a dopamine issue the only reason I ask this is due to my previous bad reactions withdrawing from opioids I didn’t get RLS but did get psychosis that literally came out of nowhere so I was surprised they chose to put me on them this time last time it was tramadol I’d been in for a finger partial amputation crush injury and the GP talked about it messing with my dopamine.
Yes. The main treatment for decades has been dopamine agonists, to increase dopamine & uptake of dopamine in the brain. However, dopamine agonists ( Ropinirole, Pramipexole and Neupro) have very serious complications and cause RLS to worsen severely and they also cause Impulse Control Disorder. Asa result, experts and knowledgeable doctors no longer prescribe them.First line treatment is iron therapy, via pills/infusions and first line meds are gabapentinoids. Opioids are used for refractory RLS.
I'm sorry to hear about opioid withdrawals triggering psychosis. I have heard of this.
It is common to have worse RLS after surgery or in your case to bring out your latent RLS again and it can take several months to calm down. If you can get a low dose opioid temporarily that would be best. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. Or try to get kratom or cannabis temporarily to help.
You were smart to refuse the ropinirole. Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. 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.)] It takes 3 weeks to be fully effective .
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)."
However since you didn't have RLS before the surgery after several months when the effects of the surgery will be over you should reduce your dose by 100 to 200 mg (25 mg pregabalin) every 2 weeks since you probably won't need as much. When the symptoms come back go back up from your last reduction.
Topamax helps some people with RLS but talk with your doctor about this. My own feeling is don't increase the dose because it is not going to help much compared with the other things.
If 70 is your ferritin, that is not enough. What is normal for others is not normal for those of us with RLS. Phone your doctor and ask.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.
Meanwhile let's assume 70 is your ferritin. 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 or at least take it in the morning if you take your iron at night. 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.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor for a new test ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.
Meanwhile 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, 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.
oh Sue thank you so much for this I can’t tel you how grateful I am for this wealth of knowledge as I’ve literally sat crying all morning as I’m at my wits end.
The supplements I take are
Multi vitamin with iron
Vitamin c plus zinc
Ashwangda
Turmeric
Glucosamine
Omega fish oil
B complex
Activated charcoal
Potassium
Magnesium citrate morning and nights
Vitamin E
CoQ10
I suffer from low platelets have reynauds so supplements have always been a way of trying to keep myself healthy but happy to discontinue any if they might be worsening the RLS
I will speak with the neurologist about your advice on Gabapentin or Pregabalin is one generally better than the other?
I have a bad tolerance with opioids and was put on these during and after surgery (oxycontin) so think this might have contributed as I always get horrific withdrawal symptoms. So will keep trying to thug it out without opioids but the Pregabalin and Gabapentin seems like a sensible tours as I’m having peripheral nerve pain from the surgery also
They are all fine except as mentioned above take the tumeric in the morning and see above on when to take some of your supplements.
I usually advise to start with gabapentin as you can increase in smaller amounts and once you reach the dose that works for you you can switch directly if you want. Otherwise they are both the same as far as effectiveness.
Hi warrior! Welcome to the group. Your user name truly sums things up. You certainly have been through a great deal. You have been provided with excellent recommendations from Joolsg and Sue. Over the past few years, I have had 3 joint replacements and each time my post op RLS symptoms were horrendous! I believe it is due to inflammation. My RLS settled down after a few months. I know that seems like a long time right now but follow the suggestions that the other members have given you. Good luck and hang in there
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