Hi all. I am new to the website and forum. I have experienced RLS on and off over the years (I'm 49) but the symptoms have only lasted a few weeks at the most. However, for the last three months I have been unable to sleep much before 3am which is when my legs decide to settle down and let me rest. I am trying to follow a non medication path to help it (I'm perimenopausal too - yay!) but having suffered from heavy periods over the years and knowing that my Mum suffers from anaemia too it would make sense that my iron levels could be causing the RLS. I am waiting for blood test results now but I wonder if someone can tell me what I should be looking out for in the results please and the best way to treat it i.e. tablets, infusion etc. I am currently taking a liquid iron supplement called Spatone and have just started on a Perimenopause multi nutrient supplement by Health & Her which also gives 50% of the NRV for iron. Thank you in advance.
Help!: Hi all. I am new to the website... - Restless Legs Syn...
Help!
Your serum ferritin needs to be above 100, preferably 300 ( according to Dr Earley a top RLS expert) and your serum iron above 60.The latest Mayo algorithm now recommends iron infusions as first line treatment if your serum ferritin is between 75 and 100 but many people manage to get iron infusions if levels are below or above that.
If you're in the UK, doctors & haematologists are unaware of RLS link to low brain iron so you have to be prepared to argue your case in detail with lots of evidence.
If you are in the UK, I'll send the links to relevant research articles & case studies. If you try to go through your GP without back up research/evidence they'll refuse.
It's very much a post code lottery.
In the meantime, you can take ferrous bisglycinate pills every other night on an empty stomach. Taking just once, every other day seems to raise levels faster according to studies, as it fools Hepcedin which blocks iron absorption in brain as soon as blood levels rise.
Iron infusions dramatically improve RLS in 60% of cases so it should be the first thing doctors look at.
And take some vit c with the iron!
Thank you so much for your reply. Yes I am in the UK. The Dr was quite happy for me to start Ropinarole but I wanted the blood tests done first and having read a lot about RLS over the last 24 hours I'm glad I did. However I'm not sure whether they check Ferritin levels as a matter of course or if this is something you need to request?
Would need to specify "complete iron panel" .-- that may differ in various regions. But check that it is a complete test including serum ferritin, serum iron and saturation percentage , at least.
Good luck.
Why in Gaia's name does HU insist on changing my writing format. Or maybe it's my phone??
Please do not start Ropinirole!!!The UK is decades behind best practice. NICE and NHS guidelines still mention dopamine agonists like Ropinirole as first line treatment which is worrying.
Top experts will not prescribe them as they cause augmentation of symptoms which is hell on earth.
They don't check serum ferritin as a matter of course in the UK so do ask for that and serum iron.
I managed to get an iron infusion and I know several others as well. In my case it didn't work, probably because I was on Ropinirole for over a decade and experts believe it causes permanent damage to dopamine receptors & iron will then make no difference.
St George's in London, the Royal Cornwall hospital and Sheffield hospital have all done iron infusions for RLS but every hospital and Trust will be different so you need to have everything ready to argue your case. As well as the links below, I have copies of a letter written by someone on a FB help group asking for an iron infusion. That's better sent by message as it is a photo of the letter. So look in your messsages.
Sorry I meant to ask what level of Ferrous Bisglycinate should I be looking for? Thanks.
Most bottles I buy come in either 25mg or 30mg pills. Take 2 every other night. It can take months to raise levels enough to see a difference. However, many people experience relief very quickly. Fingers crossed.Also check you're not taking meds that cause RLS like anti depressants, sedating anti histamines, beta blockers, statins, PPI gastric meds or cough and cold meds.
I am taking Citalopram but have been for years so not sure that would be an issue as my RLS has been intermittent up to now. I'm not on any other meds.
Citalopram is a known RLS trigger. However RLS worsens with age so if you can remove the cause, the RLS will resolve. There are a few safe anti depressants which don't worsen RLS. Wellbutrin and trazodone are the most widely used.
First raise ferritin levels. If you still have RLS, consider switching to wellbutrin or trazodone or an anti anxiety like diazepam. It's always a balancing act if you need anti depressants.
Diazepam has a long half life of 48 hours and is likely to make one sleepy. Trazodone, of course, treats both depression and anxiety.
As Joolsg mentioned, do not start ropinirole. Also as mentioned when you see your doctor ask for a full iron panel. Stop taking spatone and your Perimenopause multi nutrient supplement by Health & Her 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Spatone only provides 5 mg of iron which is not enough, so stop taking it. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Ask your doctor to prescribe gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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...
Wow that is a lot to think about! Can I ask please what Gabapentin does and why I need it? Would dealing with any iron issues not be enough or is it recommended that everyone with RLS takes it? Thank you.
Dealing with iron issues helps 60% of people with RLS but is most cases does not eliminate symptoms and as mentioned it takes awhile to have an effect. And once you find out your ferritin, it might already be over 100 so that won't help. Gabapentin can completely control your symptoms.
That's great thank you so much 😊
Gabapentin doesn't always work Sue. There are many for whom it doesn't. I'm one of them. But I agree it should be tried if raising iron doesn't resolve RLS.
I am obviously aware of that, but it is much more likely to work for those who have never been on a dopamine agonist like you were.
And I only said "can"
You have both been amazing so thank you so much. I will digest all this info, come up with a plan of attack and hope at some point in the near future I'll get some sleep! What I can't believe is that Drs are so ill informed. Really disheartening. Thank goodness for these communities and forums x
Have a look at the pinned posts. I started a campaign last year to get RLS taught at medical school & post grad doctors but the RCGPs refused, saying GPs would look up all they needed to. We know that never happens.RLS is a forgotten disease.
Amazing that you're taking on this fight though. I was saying to my hubby earlier that it makes no sense not to deal with this correctly from the get go. Imagine the resulting cost to people's physical and mental health from lack of sleep, their livelihoods, their relationships, not to mention the extra strain on health services dealing with the consequences of long term RLS.
I wouldn't wait to switch to wellbutrin or trazodone. There is nothing to lose by doing it now, Besides it can take up to 3 months to raise ferritin levels.
I will speak to my Dr about the alternatives. Unfortunately changing meds like that isn't always straightforward but it's worth a look.
I had a referral to a sleep clinic who then wrote back to my g.p to give me a prescription for iron, my g.p refused - twice. Even with the evidence right in front of them from the consultant explaining the ferritin levels needed for a RL sufferer.
Around this time I had changed my diet - no sugar, wheat, processed foods, just real foods… my ferritin went up from 44ug to 78ug. As a life long RL sufferer, I am drug free, in remission and sleeping better than I’ve ever slept.
Not once along the way was diet mentioned as a possible solution to relieving symptoms. I would have cut my left hand off to be free of RL - So the diet route for me is like a miracle.
Previous to these changes I had taken benzodiazepines for over 20 years, various antidepressants and painkillers most nights. I’m 7 months in of RL remission, I’m still thinking the monster will turn up at the back door to blight my life again, I can’t fully trust yet… but so far so good.
The real food diet brings back natural fats, ditch the seed oils, butter is back on the table along with saturated fat and olive oil.
I think my 50 years of low fat dietary advice has been a sin - for me anyway, my brain loves fat and I believe it’s made all the difference, and I lost the extra pounds I’ve been carrying.
I’ve traveled this road with a friend who was diagnosed with t2 diabetes, she is also drug free and now slowly coming off blood pressure meds, her diabetes is in remission.
Im aware this may not be the answer for all, but it may be the answer for some. I cried myself to sleep every night as a child and was told to stop complaining- it was growing pains… I’m healing a lifetime of misunderstanding from those that could never know what RL is like.
Oh, I have moments (v mild) of RL here and there, a forward bend stops it - stretching helps and my sleep is not disturbed.
So much support, knowledge and experience on here, you’re never alone on this journey and to hopefully managing this condition.
While the advice is great, I think some of the folks under estimate iron benefits when your ferritin is near 100. Mine was 117 and I added iron bisglycinate (25 MG every other day) and got relief from RLS and stopped other meds (gabapentin). After 3 months, my ferritin measured >300. At that point I reduced to 1-2 per week. So, even if your ferritin measures near 100, I recommend trying iron bisglycinate. Also I was on Citalopram for many years- I definitely had symptoms of RLS long ago but didn't have this forum to enlighten me regarding antidepressants.
I wouldn't ask for diazepam for anxiety. It has a long half life of 48 hours and if likely to make you sleepy. Trazodone is good for anxiety as well as depression.
I think you must considering real medicine from the doctor or CDB oils or vitamins and minerals with mutch iron in it, this is what I heard about and it should work. For myself is 200mg of Pregebalin enough both for my nerv pains and RLS at night. Also smal doses of opioid like morphine or subuxone is almost a guaranty for your RLS to to stop. Very small doses i believe in your case.
Wish you the best so you can get rid of the crazy legs at night.
Firstly welcome . RLS has reappeared on my right foot. I thinkits down to my losing the toenail on my righ big toe because it had disappeared for ages & only since it fell off had it restarted
I use balneum cream prescribed for me by my doctor & it works ok for me but obviously Im not going to recommend it to anyone cos it could have negative effects on other people
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