hi what a wonderful page with so much information. I was wondering how I go about finding out if this is what I mite have for years I have had restless legs and some times my arms. I have mentioned it to my doctor many times over the years but he never took it seriously. I have had it that long now I just thought it was me had never heard of it before. (but it's uncomfortable and sometimes I have to like shake my legs my wife said so many times you just can't site without saying your legs are hurting and moving them. And if I am sitting in a chair like on a plane is even worse. and have to get up and move. had to have an mri on my shoulder and had to tell them my legs hurt at times and was struggle not to move them. also recently been diagnosed with sleep apnea.so between the two I don't get much sleep and sometimes it really gets to me. any help would be appreciated
Diagnosis : hi what a wonderful page... - Restless Legs Syn...
Diagnosis
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
This is the only way it is diagnosed. If you meet all of the above you have RLS.
From what you say I am going to assume you have it and give you advice.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. 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, 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. 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. (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 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...
Where do you live? I may be able to give you the name of a doctor who is knowledgeable about RLS
Meanwhile 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, oestrogen (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 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 in and your gender.
Thank you so much I am a male in England don't smoke at all and don't drink alcohol often and when I do its only like 3 maybe 4 pints of cider but not done more than maybe 15 pints this year in total. I take omeprazole and have done for 20 plus years.
Omeprazole blocks iron absorption and that's what triggers RLS.Many people first develop RLS when they start PPI meds or anti depressants or sedating anti histamines.
Follow SueJohnson advice.
You may well be a good responder to an iron infusion.
Sadly, UK doctors are at least a decade behind the top RLS research and teaching. In fact, it isn't taught at all in the UK, so most people on this forum know more than most GPs.
First, get blood tests, then arrange iron infusion, privately if need be.
Sleep apnoea can also trigger RLS due to lack of oxygen. So a CPAP machine might help.
Whatever you decide, do NOT let GP.or neurologist prescribe dopamine agonists ( Ropinirole, Pramipexole, Neupro patch). The top world RLS expert, Dr Earley at Johns Hopkins Hospital, believes EVERY person who takes them will experience drug induced worsening of RLS. It's called augmentation and, believe me, if you think RLS is bad now, multiply it a thousand times, and that's what dopamine agonist cause. Withdrawal is hellish. Many cannot make it through withdrawal. So, avoid dopamine agonists.
Raise serum ferritin above 200ųg/L vis iron infusions, and see if you can take different treatment than PPI meds. Good probiotics, healthy diet and gaviscon can relieve acid reflux.
I have found out more information in the last hour than I have in the last umpteen year of having this issue I don't take any other medication on a regular basis mabe a headache tablet if have headache but that's my lot. When I have had blood test done before when I seen doctor about the sleep issue (before I was diagnosed with sleep apnea) i now on a cpap my bloods all came back OK so he said. It took me about 5 plus years before I seen a sleep clinic and that was keep going back saying I was not coping with no sleep. Thank you all so much
You probably didn't even have your ferritin tested as that is not part of normal blood tests evn for iron and if you did doctors will tell you everything is fine but what is normal for others is not normal for those of us with RLS. So ask if your ferritin was tested and if so what it was and if not ask for the test I indicated above.
Where in England do you live?
And Joolsg is right about Omeprazole . If you continue to take it your magnesium should be checked. If you need an antacid I recommend Gaviscon Extra Strength Tablets and Liquids. Don't just stop taking omeprazole you would need to wean off it, but you can switch directly to Gaviscon.
Formulations of Gaviscon vary between the US and UK.
I see from gaviscon.com that the listed active ingredients in each tablet of (US) Gaviscon Extra Strength are Aluminum hydroxide 160mg and Magnesium carbonate 105mg; the active ingredients in each 5 ml teaspoonful of the liquid are Aluminum hydroxide 254mg and Magnesium carbonate 237.5mg.
These products are not available retail in the UK and no Gaviscon UK products contain either aluminium or magnesium: while it is possible to source Extra Strength via eBay, I would be cautious of doing so.
The strongest forms of Gaviscon from gaviscon.co.uk which aren't a PPI (Gaviscon Guardium contains Esomeprazole) are either:
Gaviscon Advance which contains 500mg Sodium alginate and 100mg Potassium bicarbonate per tablet; 1000mg Sodium alginate and 200mg Potassium bicarbonate per 10 ml of liquid.
Alternatively Gaviscon Double Action contains 250mg Sodium alginate, 106.5mg Sodium bicarbonate and 187.5mg Calcium carbonate per tablet; 500mg Sodium alginate, 213mg Sodium bicarbonate and 325mg Calcium carbonate per 10 ml of liquid.
I knew this but in my hurry to prepare my remarks on the draft guidelines which I have spent all day on, I missed this in my notes. Thanks for catching it.
Leicestershire
Dr. Bagery - at the Barberry Clinic Birmingham. He is helpful and knowledgeable about RLS,However there is a 12 month wait for an appointment through the NHS but if you can afford to go private you can call and ask if he will take private patients and that would be a lot sooner.
See ChrisColumbus's remark on Gaviscon
Do consider SIBO as a cause of your GERD or other digestive symptoms that you take PPIs for. I had GERD so bad my teeth hurt from stomach acid getting into my mouth. It is counterintuitive - but INCREASING stomach acid (with apple cider vinegar and/or HCL w/pepsin) can be a big help. I was never tested for SIBO - I just assume I had it due to symptoms (GERD, bloating, etc). SIBO is related to RLS, see below.
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