I am actually astounded at the amount of information I have learned from here in just a few short days.
I have had restless legs since I was a teenager, I’m now 50. Seen several gp’s over the years to be told there is no medical treatment available. Two years ago a new gp started me on amitriptyline for it, which seemed to help for a month or so then back to square one.
In the last few months the RLS has gotten really bad, I moved house and medical practice, my new gp took me off the amitriptyline, and advised me that my Fluoxetine can make it worse! Have started reducing that from 40mg now on 20mg per day. She did a full blood work but reading on here I don’t know if she checked my ferritin levels.
She suggested starting me on a DA last week when I saw her and thankfully from what I have learned here I told her that I would not be going down that route. I also have two Therapulse devices which rarely help, but my poor husband will buy me anything if he could take the nightly distress away bless him.
GP has contacted the movement disorder clinic for further advice, but I now know that the SSRI could well be causing the RLS aaarrgh… I’m also on HRT, don’t know if that can cause issues with it too?
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Tw99
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Welcome. As you have discovered ALL anti depressants cause or worsen RLS.
Amitriptyline is a major culprit. Fluoxetine worsens RLS.
But if you've been on it for years- you can't just stop or you'll get withdrawals.
So discuss fully with GP and reduce slowly. If you suffer from depression or anxiety, the safe alternatives are trazodone or Bupropion.
And well done for refusing a dopamine agonist. As you'll see from this website, everyone taking them ends up with more severe RLS and withdrawal is hell.
HRT can also worsen RLS for most people (but there are exceptions).
Raising serum ferritin is now first line therapy. Studies consistently show it improves RLS for the majority. So get the full iron panel blood tests.
RLS-UK has a printable page on iron therapy under 'useful resources'.
If raising serum ferritin above 200ųg/L and replacing the anti depressants doesn't resolve symptoms, your GP should start you on gabapentin or pregabalin.
Joolsg is correct in everything she said but let me add my usual advice which will repeat some of the things she said.
Checking your ferritin is the first thing your doctor should have done. 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 ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid 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. If they are not, post them here and we can give you some advice.
ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) 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 nor calcium-rich foods 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 up-to-date 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, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
The jury is very much still out on HRT. For me it actually lessened my RLS. From the sparse studies it seems that mainly estrogen only may worsen RLS, whereas the combination of estrogen with progesteron will not. But, as in many other aspects, we are all different. Thus if you think the HRT is affecting your RLS negatively, talk to your doctor and reduce and stop it for a while to see what happens. But be careful to reduce and stop only one medication at a time, otherwise you will not know which one was the culprit when your RLS improves.
And get a full iron panel including ferritin. Maybe improving your iron status together with reducing and stopping the ADs will eliminate tue RLS. 🤞🏻🤞🏻🤞🏻
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Advice please
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