Hi, been a browser on this forum for a few months having suffered with RLS since my teenage years. Having avoided going down the medication route due to concerns over DA augmentation, finally visited my GP a few weeks ago following a night pacing the floor (we all know how distressing this is!). My concers over the GPs awareness soon evaporated as she was empathetic and seemed genuinely aware of the condition.
Have had one blood test but wasn't full iron panel so needs doing again, scheduled for mid-October, will report on results when available.
GP said she couldn't prescribe directly as had to consult with a neurologist, guess what, neurologist has suggested Rotigotine patch, aargh!
Clearly having browsed this forum I've declined. GP expected this as I told her I didn't want a DA.
She's going back to the neurologist to request gabapentin or pre-gabelin is considered but just another example of the absence of awareness of the harm that can be caused by DA prescription in the UK for RLS.
Hopefully thr neurologist will reconsider or the GP will prescribe directly.
In the meantime I've started taking iron in accordance with the amazing advice on this forum which has helped a little so hopefully this trend will continue.
Best wishes all.
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PRSSi
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Hi PR, are you taking the iron (hopefully ferrous bisglycinate) on an empty stomach about two hours before bed? Doing this relieves my RLS in about 1.5 hours for one night.
SSRIs, calcium channel blockers, metformin and melatonin (among many others) will make the symptoms of RLS worse than they have to be.
Hi DesertOasis,Yes, I'm taking ferrous bisglycinate on an empty stomach approximately 1- 2 hours before bed. I'm also taking lactobacillus plantarum 299 alongside as recommended on this site. Symptoms have lessened but still occur nightly. I'm hoping as my iron levels increase the symptoms decrease and remain in hope that if they don't, one day I'll get recommended a medication other than a DA.
Unfortunately I do take an SSRI and a proton inhibitor (for hiatus hernia acid relief) but the RLS pre-dates both medications so, whilst they may not be helping, they were not the cause.
Muchas suerte! I too have a hiatal hernia. I recommend staying on top of acid. I ended up with a very recalcitrant esophageal stricture at the very bottom of esophagus from constant irritation. It’s a very mechanical thing not subject to diet. If I could become very thin then maybe the hernia would rest in place and allow that juncture to close.
The iron is like whistling in the wind when taking an SSRI. You may need to take a little more iron. 56mg? I no longer recommend stopping SSRIs to people. Just using lowest effective dose. You might want to talk to doc about switching to Wellbutrin or now people are talking about Vorticien (spelling).
They may not be the cause but they can make RLS worse. If you are taking it for depression trazodone is safe for RLS. If you are taking it for anxiety buspar is safe.
RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. I would suggest gaviscon advance instead. Take it 30 minutes after eating, 4 hours before or 2 hours after taking iron Don't take antacids within 2 hours of taking gabapentin, antihistamines, some antibiotics, beta blockers or steroids.
Are you taking any other medicines? Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Can't the GP prescribe gabapentin or pregabalin without the neurologist? I'm in the US but thought the neurologist recommends the GP to prescribe it and many don't even see a neurologist unless they want the neurologist to recommend an opioid.
Hi Sue,It seems in the UK that's the rule, the GP was excellent and seemed almost ashamed in passing on the DA recommendation so I remain in hope that the neurologist will alter the recommendation or prescribe directly.
Thank you for your reply and for all the advice offered by yourself and the other knowledgeable folk on this forum, it really has been a great help.
UK GPs can prescribe pregabalin and gabapentin. It's set out in NHS and NICE guidance.But some GPs have different rules in different parts of the country. Either local prescribing guidance OR the surgery's own rules.
Postcode Lottery.
My GP prescribed pregabalin and opioids without any guidance from a neurologist.
Well done!Show the GP and neurologist the brand new AASM guidance which relegates ALL DAs, including Rotigitone, to 'end of life'.They can't dispute top, expert evidence!
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.
You have probably seen this but just in case you haven't:
When you have your 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.
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...
Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption wich you are already doing.
Since taking it didn't completely relieve your symptoms, take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
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Doctor visit a bit disappointing
Rotigotine patches 
What Next?
GP knew less than I did about RLS :’-(
