Hi, I was chatting to a colleague today about their restless legs which have been unbearable lately. Their doctor put them on Perindopril for high blood pressure, Amiodipine- a calcium channel blocker, and Fenofibrate for high cholesterol. He thought they made his legs so much worse (his doctor doesn't seem to listen to him just prescribes new tablets) so came to me for help. He has stopped the new meds as he wasn't happy with the prescribing but wondered if they could have made his legs worse and whether there are others in the same class/purpose that are 'safe'.
He's also been on Desvenlafaxine 50mg for about 15 years and although it didn't cause bad legs in the beginning, wonders if it's contributing. Here you can't be prescribed the 'safe' ones unless you're giving up smoking! I take venlafaxine and it's not made my legs worse... but only a dose of 75mg but of course I know we're all very different.
I've suggested he gets a full fasting blood panel and explained about fasting and 'normal' readings etc; and join HU and read to educate himself, given him the Mayo Algorithm and suggested joining RLS USA and or UK. oh, and I warned him about DAs! He's being driven mad by his legs, isn't sleeping and is desperate to find some solutions.
I mentioned the triggers, to keep a food diary; tries the non-prescription things to try to keep him sane and give him at least one night's sleep, like cannabis, codeine (although you can't buy that OTC here in Australia), to try heat, cold, stretching, etc. etc. and to try coffee in case he's one of the ones that it helps (like me)! I explained about too much/too little exercise, Gentle Iron and magnesium. He probably won't remember a lot but if he joins a RLS organisation HU he will soon find out so much more.
Is there anything else I can suggest while he starts reading and researching RLS himself... and hopefully looking for a doctor who listens!
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restlessstoz
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He will have to learn for himself by experimenting and gradually eliminating, and changing around.
He really should go back to the doctor and be firm. But only after he has taken your good advice to learn all he can about the effect of medications, and other triggers.
Thank you Madlegs. I'm not sure about his doctor as it's a new one (his old one who did listen, retired) who just seems to prescribe without listening to the patient. He'll have to see how things go when he tries to 'educate' him. I've sent him your reply about the Amlodipine. Thank you.
Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. He should discuss these with his doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. He might want to discuss these with his doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.If he ends up taking gabapentin or pregabalin he should be closely monitored as it can raise the bad LDL and lower the good HDL
He should ask for a full iron panel. A blood panel won't give him his ferritin. He should stop taking any iron supplements 48 hours before the test, not eat a heavy meat meal the night before and fast after midnight and have his test in the morning before 9 am if possible.
Desvenlafaxine is a SNRI that makes RLS worse for some. Safe ones in Australia are Nortriptyline and moclobemide and the best one Bupropion (zyban) can be prescribed off label.
If none of the non-prescription things work he should ask his doctor to prescribe gabapentin or pregabalin.
You may have told him this but in case you didn't mention all of them: some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, 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.
And I know you have mentioned some of these: 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 OTC supplements can make RLS worse. If he is 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.
Thank you so much Sue for such a comprehensive reply. I knew I could rely on the wonderful support from HU to help my friend. I've passed on your comments so he'll start to work through the information. I don't know what we'd all do without your wonderful dedication to HU. THANK YOU.
Ask him to join this forum and read the posts every day. There's a lot of good information which comes up most days and because everyone is different you get to see a wide variety of situations, triggers, symptoms and in some cases "cures". He may well see something he identifies with or wants to try and reading people's posts will really consolidate the options in his mind. And he can always ask specific questions himself.
Yes, done that. He's going to join and read everything he can. Thank you. It's by far the best way to learn more about RLS that I've found and I encourage everyone to join.
Hi there I was a sufferer of RLS for most of my adult life (I’m 49 now) I started taking magnesium about 3 years ago and whilst it took a while to work (GP prescribed Amytriptyline, hated how they made me feel as they knock you out made me feel so sluggish in the mornings) I can say that I’ve not had an episode for 2.5 years!! It’s changed my life! I can send you the exact ones I take (can be bought on Amazon)
Hi RedRobin46, that is great news! What form of magnesium do you take please? Magnesium citrate, or magnesium threonate etc? Also how much do you take and what time(s) during the day?
I do wish I could help but my only experience is with dihydrocodeine which I was prescribed years ago for pain because I can’t take anti inflammatory medication. It has helped hugely with restless legs so I now regularly take 2 at night and sometimes another during the night. So well worth a try if you have amenable G P! All the best. Daisy
Thanks Daisy. I did suggest codeine to try but as you say, it takes an amenable GP. In fact, I gave him so much information, I think he'll come up for air sometime in about 2027!!!
I live in Perth Western Australia and I see a sleep specialist Dr Richard Warren. He specialises in treating people with RLS. Dr Warren attends seminars overseas with other RLS specialists and is extremely knowledgeable with all the latest research into treating RLS. It may be possible to have a phone consultation with him if your friend lives in another part of Australia.
Thank you for this information. I'll let him know. At the moment I think he's head down and learning all he can... I'll also keep it in mind for myself! Thank you.
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