I have fairly severe RLS and have just made an appointment with my GP to discuss the results of my recent blood test, they are:-
Ferritin 114
Transferrin Saturation Index 32%
I don’t want to take medications if possible, am I right in thinking that I should initially try an iron supplement ? and for how long before requesting Gabapentin ? I have tried an iron supplement in the past but may have stopped taking it too soon.
Apparently, my Vitamin D level is particularly low, could this have an impact on RLS or even be the cause ?
I have been reading all the posts on this but would appreciate any comments please. My GP has previously mentioned Ropinirole (preumably taken from the NHS web site) and I want to ensure that I am in a strong position to reject this.
Thank you
Written by
Shad0w2
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Certainly you can try an iron supplement but with a ferritin of 114 it is unlikely to help much if at all. But I would request the prescription for gabapentin so you have it. You don't need to fill it right away. You have probably seen this:
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, 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.
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.
I too have severe RLS. In on pregabulin ( gaba family) for another condition but rls is still severe. Recently put on pramapaxole for rls specifically which was a game changer until recently when pain seems to have exploded n once again hard to control. Personally I would try pramipaxole or Ropinirole over gabapentin which can be very difficult to come off. Thus far in life I have found opioids initially did a fabulous job at controlling RLS. Magnesium as a topical ointment is normally excellent at controlling it up to a point. I put it on when my legs start of an evening and it contained the aches well. Failing that it's cold baths throughout the night for me. I hope you get sorted.
I don't like the gabba family at all because I went into withdrawal years ago, without having a clue about it at the time, when I was swapped from gabapentin to pregabalin overnight on the basis that they were both from the same family of drugs. It did me a lot of damage .However I now know that I appear to go into withdrawal at the drop of a hat and have managed to defeat the pain pharmacist who oversees drug withdrawals in my city in the UK. Apparently I am one of only two people in his entire career who he has failed to get off pregabalin.
I am sorry for what happened to it but if your doctor was knowledgeable it could have been avoided. You can switch directly from gabapentin to pregabalin if the right conversion was done with out any problems. and when you come off either one of them it has to be done very slowly.
On the other hand dopamine agonists like pramipexole or Ropinirole are VERY hard to come off of.
It sounds like you are suffering from augmentation from pramipexole . The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen which can include pain.
This means you need to come off it. When you are ready I can give you some advice.
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...
How much pramipexole are you taking?
How much pregabalin are you taking?
What opioid were you taking and what dose and what happened?
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, avoid 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.
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, low potassium. 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.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in
Thank you Sue. I'm in uk but will update profile. I developed rls after getting glandular fever 40 years ago. I also have cfs and fm. I'm check out the info u reference n post again with more details later. Many thanks.
It sounds like you're fairly clued up already. Yes, you should avoid ropinirole, and yes, low vitamin D is implicated in RLS. To what extent, I'm unsure, but it seems a small number of people experience an improvement in symptoms after supplementing for a while. While still worth supplementing, i wouldn't be too hopeful of that being the reason for your RLS.If you don't wish to take medication, are your symptoms bearable currently. Have you identified any food / medication triggers.
Thank you for this, it’s very helpful, the Doctor has called me in because of the low vitamin D result so I was particularly pleased to receive this feedback.
My symptom's are reasonably bearable as some nights are a bit better than others but I have got to the stage where I desperately want to stop them getting any worse.
No definite food triggers but I keep experimenting.
If your GP tries to tell you that he can ONLY prescribe Dopamine agonists, tell him to read NICE cks guidance which makes it clear pregabalin or gabapentin are also first line treatment. You are clearly aware of how dangerous Dopamine agonists are. So tell the GP that RLS-UK no longer supports them and follows the US best treatment and research.
The UK is at least 10 years behind best treatment.
Augmentation happens to everyone according to the top US experts. It doesn't matter if you keep the dose low.
ICD affects up to 38% and RLS-UK recent study showed 11% were suffering ICD.
Given the hundreds of legal cases against UK GPs and neurologists, your GP may want to learn more about RLS and how to treat it properly.
I understand not wanting to take medication. I tried so many alternatives over 3-4 years before I accepted that I needed something more. I find dihydrocodeine is fantastic for switching off the legs.
I was on gabapentin which didn’t do much and have now moved to pregabalin which is working well for me alongside modified release dihydrocodeine.
We all react differently. Definitely no dopamine agonists and yes to increasing your vitamin D. Good luck!
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IV Iron Infusion for RLS
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