I have right hip arthritis, and am on the list for a replacement.
The last few years I have developed severe restless legs. Happens during evenings particularly when I’m tired and when in cinema, theatre , airplane etc. but always in bed. It not only disturbs me, but causes my partner to lose sleep also… We have a pillow partition between us to prevent ‘injuries’!
Is it linked to the arthritis I wonder? It seems to getting worse. I’m looking for something to ease this problem. Any advice would be greatly appreciated (I have not talked to a doctor yet)
Yes, any bone issues can trigger RLS.Read and learn all you can about RLS.
In very basic terms, treatment is
1. Get full iron panel blood tests & raise serum ferritin above 200ųg ideally.
2. Review & safely replace any trigger meds(anti depressants, sedating anti histamines, statins, beta blockers, PPIs).
3. If 1 & 2 don't help, start pregabalin or gabapentin as per timing & doses on RLS-UK site.
4. If 3 doesn't help after 2 to 3 months, start a low dose opioid ( the long half life opioids are highly effective).
And whatever you do, do NOT take a dopamine agonist (Ropinirole, Pramipexole, neupro patch) as they ALL cause the disease to increase in severity and experts no longer prescribe them
When you have the op, make sure you discuss with the anaesthetist, as the anto nausea meds they use will trigger RLS. You need zofran.
Welcome to the forum. You will find lots of help, support and understanding here.
I agree 100% with what Joolsg said.
To expand on what she said. 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
As Joolsg says above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. 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 will take 3 weeks before it is 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...
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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live.
For your surgery tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine if you are taking any at that time and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea as Joolsg said.
You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS" And make sure your ferritin is high as surgery can cause blood loss making your ferritin go down
I think that Lamotrigine, Carbamazepine, and Oxcarbazepine are used as mood stabilisers, specifically lamotrigine for the depressive episodes of bipolar disorder, so maybe this is why they are listed?
Welcome to the forum: it would be useful if you could complete your Profile to show which country you are in, as availability of treatments etc varies around the world.
"Research published in the Journal of Clinical Rheumatology found that restless leg syndrome occurred in about 28 percent of patients with rheumatoid arthritis (RA), and about 24 percent of patients with osteoarthritis — more than double the prevalence of RLS in the general population."
The link could be inflammation, it could be low levels of iron. It could also be a reaction to a medication or supplement that you are taking. Jools and Sue have already given you the best information and advice.
I'm sorry about your symptoms. I started to have joint issues when I was in my mid-30s, which were diagnosed as various types of arthritis (rheumatoid, psoriatic, osteo, lupus). As for RLS, I've had it off and on since I was a child, but it didn't become a nightly issue until I was in my 50s. So, for myself at least, the two seem to be unrelated, unless, of course, RLS turns out to have an autoimmune component, which it may.
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