Hi everyone,

[Bramble2000]

Hi, I’m going to see my GP son about my restless legs but also, I’m waking up extremely disoriented. I wake up and for 15 minutes, I stare at my hands trying to work out why I can’t Google anything. Eventually I worked out that it was because I didn’t have my phone in my hands. It was the weirdest thing. It keeps happening to varying degrees.

What is the GP likely to offer as treatment? What should I ask? This is all new to me. My restless legs are absolutely horrendous and sometimes affect my arms. The not iron deficient not folate. Thanks.

[Madlegs1]

What medications are you on and their dosages?Do you keep a food diary to figure any triggers?

[Bramble2000 in reply to Madlegs1]

Nothing has changed in my diet or medications for many years. I do have never significant health issues, Ankylosing Spondylitis and Polymyalgia Rheumatica.

[Bramble2000 in reply to Madlegs1]

I’ve had the RL on and off for the last 3 years but the nighttime disorientation has been happening in the last year but getting progressively worse.

[Jumpey]

What meds are you on ? They could be triggering RLS.Do you know the exact figure for your ferritin? It needs to be over 100 if you have RLS. Increasing ferritin levels to over 100 eliminates RLS for some people.Iron infusions are effective for some.

Look up the Mayo Clinic algorithm for RLS treatment and be prepared for your consultation. Don't accept a dopamine agonist like ropinerole because they cause worsening symptoms (augmentation). Your doctor is likely to offer gabapentin or pregabalin which are alpha 2 delta ligands. Low dose opiods are an alternative option if you can't tolerate these drugs.Good luck.

[Bramble2000 in reply to Jumpey]

I already take oramorph and pregabalin. My meds haven’t changed in several years.

[SueJohnson in reply to Bramble2000]

How much pregabalin are you taking? Does it and the oramorph control your symptoms?

[Jumpey]

I don't know about pregabalin but tolerance certainly occurs with oramorph which is what I take.

[SueJohnson]

That is really strange. Definitely discuss it with your doctor.

You say you are not iron deficient but have you had your ferritin checked? It is not checked in a regular blood count and yet it is the most important thing to check for RLS. 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.

As Jumpey said check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it 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...

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 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.