RLS also in arms

[Jgou]

Been diagnosed with RLS for 12 years now about 4 year ago it started in my arms as well I get the jerks with it as well it’s so embarrassing that I hate going out.I do get a warning sign when the jerks are going to start its like when your stomach is giddy with laughing a weird sensation then it starts the jerking I am on butec patches for the pain and sensation. I don’t know if this is a stand alone thing or part of my fibromyalgia but anybody with RLS my heart goes out to you because for me it’s not just the pain it’s the embarrassment of it as well.

[Jumpey]

I empathise greatly. I too get it in my arms sometimes. Many people do. Are you taking any other medications which could be making your RLS worse?And what are your ferritin level is like? I assume you know it should be over 100.

[Jgou in reply to Jumpey]

Thanks for your information but no haven't had anything checked or seen anybody about my RLS for years my gp died at the start of covid and she was brilliant so since then it’s a case of just keep getting Butec 15mg patches on repeat prescription and if I do mention it to any other gp the first thing they want to do is take me of Butec because of the cost and that’s a definite no for me tried every other medication there is for RLS and it’s the only thing that gives me any sort of relief. Was always under pain management at hospital and was supported but then they started using connect pain managment total waste of time so just like most people with RLS you just cope best way possible.

Thanks for your reply and information about ferritin never heard of this but will be mentioning it next time I manage to get a gp appointment

[Jumpey in reply to Jgou]

Please ask for your blood test results when you have one. RLS sufferers need a much higher ferritin level than the general population. At least 100, preferably 200. If your ferritin is low you could ask for an iron infusion.

[Jgou in reply to Jumpey]

I will do that thanks for the help and information

[DicCarlson]

Iron is the key in many RLS cases...

youtube.com/watch?v=VVlQKOO...(Not working as expected?)

[Beckonwood]

I also get it in my arms and there have been times when I get it in my body. Usually its in my legs and when it gets bad I can stand to relieve the feeling. But when I get it in my arms and trunk there is nothing I can do to relieve the symptoms. I take oxycontin for my RLS which helps. I also also go to a pain mangement office to get the prescription as my primary doctor is afraid of loosing his license.

[SueJohnson]

On the blood test - 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 multivitamins that have iron in them 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. If they are not, post them here and we can give you some advice.

Having it in the arms is normal but the jerks where you get a warning is strange.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, using a standing desk, listening to music, meditation and yoga.

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.

[SueJohnson]

Are you taking any medicines for your RLS besides the butec patch?

[Jgou in reply to SueJohnson]

No I’ve come of all other meds with having brain aneurysm’s but can’t do without patches as they also help with osteoarthritis and fibromyalgia even though they were prescribed for RLS. Without them I can’t get out of bed.

Have hot baths and do hot and cold tried weighted blanket was no help most the meds for RLS I’ve had over the years and some of the side effects were terrible.

Thanks for your reply and I will be looking into things you have mentioned.