I'm new in this community so apologies if I ask questions that have been discussed previously. I've read some of the posts and found very useful info so I'm very glad I found this chat. Big thanks to everybody that shares their experiences and tips.
I have suffered from RLS since I was a teenager (I'm 30 now). Back in the day it was very sporadic. However, it has gotten WAY worse over time (specially after my pregnancy two years ago), and now I'm suffering from it every single night. It's really affecting my sleep, my mood and my energy levels.
Finally, I got referred to the neurologist and got prescribed different meds (i.e. Adderall, Atarax, etc.), however, they worsened the symptoms and I had to stop taking them. He didn't really offer other options or solutions...very disappointing.
My iron levels are okay (137ug/dL), but the ferritin has been on the lower boundary for the last few blood tests (right now it's at 21 ng/mL). So I got prescribed liquid iron (gentler with my stomach) once a day and then vitamin C tablets for a better absorption. So far it's done nothing to my RLS.
I don't suffer from other health conditions. I try to follow a healthy diet, exercise regularly and don't drink caffeine.
I am very lost and don't know what else to try, maybe trying different meds...It's also hard because nobody really understands how disabling and frustrating it can be.
Thanks in advance for taking the time to read my post!
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Anna1991
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Your doctor has been wise in looking into your iron stores. As you may have learned, a ferritin of 21 is very low for people with RLS. When you take iron orally, as you do, it takes quite a while to increase your iron to reach a level that potentially can ease your RLS. It may be wise to have a full iron panel done no later than 3 months after you started supplementing, to see if it helps and how much. If your iron saturation is low, you may actually qualify for an iron infusion. Here is the standard paper on iron for RLS, in case you didn't have it yet: sciencedirect.com/science/a...
I imagine you want a faster solution, even if it only needs to be temporary. You could discuss a painkiller, like codeine or tramadol for a temporary solution. And oxycontin if the other two prove not strong enough. Otherwise, the currently advised first line of treatment is gabapentin or (more expensive) pregabalin. Both take a while, some 3 weeks, to become effective. And it may take time to find your lowest effective dose.
Incidentally, I assume you and your doctor have looked at aggravating factors, including various medicines, mainly antidepressants and sedating antihistamines. And quite a few people benefit from magnesium. But be careful if you want to try magnesium, as it interferes with the absorption of many other things, including iron and gabapentinoids. If you start combining, take them at least several hours apart.
I hope you find relief soon! Especially that the iron will work for you. 🤞🏼
Many thanks for the useful info, and the link to the paper. I should have done this research a long time ago, but never thought it would get this bad! I will definitely continue taking the iron, as many people have pointed out that this is a major thing and it can take months to achieve decent ferritin levels. They are VERY low at the moment, so I hope that my RLS improves once they are higher!
Your ferritin level is very low so I think your doctor will be able to declare that you are anemic and therefore suitable for an iron infusion within the system. Depending on where you are this might just mean that the doctor can prescribe the infusion and then you pay for it or in Australia they can prescribe it and have the treatment all at the taxpayers expense. One of my daughters had a very low ferritin level, comparable to yours, and her doctor prescribed an iron infusion which she had a few days later. She hasn't had ANY RLS since and that was a few years ago (perhaps 2018) It doesn't work for everyone but imagine how annoyed you will be if you put up with slow oral iron for 6 months and then find your RLS could have been fixed free of charge in a week. In Australia I did a "Doctor crawl" and the fifth doctor was a wonderful woman who prescribed the treatment for me. Same lady who treated my daughter. I had to pay about AUD600 all up for the job. The infusion raised my ferritin to about 350. It didn't help the RLS but it allowed me to cross low iron off the list of possible "cures".
Keep on with the iron, I take it the 137 is your haemoglobin level which is OK.
A ferritin level of 21 is awful!
It needs to be at least 100, ideally 200ng/mL It could take months to achieve.
There is another possible culprit in RLS, which is folic acid. There seems to be some research pointing to low folic acid levels in some RLS suffers (me for example). As I understand it the recommended dosage is between 1 and 10 mg per day. Get a doctor to do a proper blood work up looking for serum ferritin, salts (like magnesium), and folic acid levels. The connection between pregnancy and low folic acid levels is well known.
Given that many people find their symptoms improve on iron, I'd be looking at raising ferritin levels in the first instance.
There's a school of thought that says iron infusions are more effective than oral iron. However, if you continue with oral iron, take on alternate days as opposed to every day, and away from meals.
While getting that sorted, maybe try a benzodiazepine in the interim. I find clonazepam in particular to be helpful.
The fact that the RLS came on with a vengeance after pregnancy also points to low iron (ferritin) as a possible culprit. People who develop RLS in pregnancy often do well following iron therapy.
I will definitely continue taking my iron and see if this helps my situation. I never thought that I would "qualified" for iron infusions as my haemoglobin levels have always been OK (and therefore, no anemia), however, now that I have been reading and researching more about this, I may mention it to my GP. It could be a plan B if oral iron does not work at all. Hopefully, oral iron does the trick!
You might be suffering RLS for a year taking oral iron and still not get to a high enough ferritin level to relieve the RLS in your particular body. We are often different in our reactions.
If you can beg and plead with your GP to try an iron infusion then you might find you are rid of RLS in just a couple of months. It might even be immediate. Some people manage to talk their way into an infusion immediately and paid entirely by the taxpayer. Personally I think that's an excellent use of any of my taxes.
I had to try five GPs before I could get permission to get an infusion at my own cost so don't give up asking too easily.
If you wake up in the night with restless legs (or arms) try spraying them with magnesium oil which can be bought at Holland and Barrett or Amazon. This usually helps me enormously. Takes about 15 minutes to work. Taking magnesium tablets doesn’t work for me.
I just love the detail you give and try to follow. In this instance any chance of converting from technospeak to words of 4 letters or less....LOL. Perhaps the Samsung has that setting.
Oh dear, yet another neurologist who knows nothing about RLS. Both atarax and adderall are known to worsen RLS. Are you in the USA? Both those drugs are not common here in the UK.Manerva has listed the drugs that help. The RLS US foundation is excellent and has a list of Centres Of Excellence. They also have a list of co -ordinators in many states who can recommend doctors with RLS experience.
No, it was not in the UK, I got those prescribed while living in Spain - so well spotted. I think I did not have much luck with the neurologist that treated me back then. He tested me for MS, as he thought my symptoms were compatible. It was a bit scary for me, but everything came back negative, so he then prescribed those meds. They made it worse, so I basically gave up looking for professional advice and carry on, until now that it's really affecting me.
I have MS and it's nowhere near as serious a disease as severe RLS. I just wish doctors & neurologists realised that.If you're not on any meds definitely raise your serum ferritin first but if it doesn't help, you'll probably need to try the meds listed by Manerva. Many people find alternative supplements and diet help but if your RLS is related to spinal or CNS damage, then meds are usually the only remedy.
Love it. The predictive text is a bane of us all. Hurry to reply in considered words only to find the predictive text has altered it to something without understanding. Only then to be pulled up for "spelling errors (US lingo)" or incorrect words.
Try typing "spurdog" with predictive text. (Predictive text please note, it's a type of fish, of the shark family).
Wow. THANK YOU very much for taking the time and the double effort to answer my post!You just provided me with more useful information and details than both my GP and Neurologist ever did.
I will definitely have a look at the UK NICE guidance on RLS and to the meds you suggested. I need an immediate solution. To be honest, I should have done my own research on this a long time ago, but I somehow trusted the neurologist's advice. I'm very glad I found this community.
Re ferritin levels, I knew they were very low but my GP never seemed worried as the hemoglobin was always OK. Currently, I'm taking 40 mg Oral Solution, once a day. However, after reading a couple of papers on this, I'm now concerned as to if this will ever be enough to build up my ferritin levels to at least 100ng/mL.
I'm contacting my GP again on Monday and this time I'll be more direct and ask for my preference.
It's a bit sad because I feel like he was almost suggesting that, because I mention being under stress with a big project at work, this was causing me the restless feeling...and once this had passed, my situation would improve...I just wish it worked like that!
One thing to note about the ligs, especially Pregabalin, is that a primary side effect (some studies suggest 30% or more who use it) is significant weight gain. Many people report increased appetite and an inability to lose the additional pounds regardless of exercise or dietary restrictions. Although the reasons aren't exactly known, it appears probable that there are hormonal and metabolic changes that these drugs engender.
Other considerations are occurrences of fatigue, dizziness, and "fog brain" (I know, a highly technical term), which may or may not decrease over time. Some researchers believe that some of these symptoms are behind the weight gain issues that people experience.
As many have noted, taking medication is a threefold matter of clearing up those lifestyle elements that exacerbate RLS (diet, drug interactions, exercise, etc.); ascertaining your iron levels at different data points; and patiently determining which prescriptions work best for your situation. The last can be the most frustrating, as the cumulative effects of sleep deprivation can lead to a quite understandable desperation.
Having suffered from RLS for the past 30 years or so, I can say that a willingness to educate yourself and then try a variety of control methods over time is likely to result in decent outcomes.
PS One more thing to add: If you are in the US or anywhere that allows for medical cannabis, I have found that relatively low concentrations of THC are immensely useful in conjunction with other treatments and lifestyle changes. You can actually get to the point where you are not "buzzed" but find significant improvement to symptoms.
Hoping that you will find a good path to treatment.
To be totally honest, side effects have always put me off a little when considering taking any kind of meds to treat my RLS. I am healthy and fit person and did not want that to change due to meds and side effects. However, I have now reached a point where it's really affecting my life on a daily basis and as you said, it's led me to desperation.
I'm doing some research and educating myself (something I should have done a long time ago), so I hope I can get a combination of methods that work for me. Hopefully, once I get my ferritin to decent levels, the RLS will improve.
Re medical cannabis, I live in the UK but have no idea if I would "qualify" for that, or even if GPs are allowed to prescribe it in my cases. I wonder if CBD oil can offer some help - any idea? As that's something that can be bought easily.
You can definitely get medical cannabis for RLS in the UK. I'm on the oil with 20% THC. Available through twenty21.drugscience.org.uk/project-...
However, not available on the NHS so we have to pay. Initial consultation is £99 & oil is £299 for 100ml.
They also prescribe bud flower for vaping/smoking/ cooking and depending on strength and what's available, it works out about £2-3 a day.
I've found the oil really useful as it knocks me out for 3 hours. I am asleep before the 'high' hits and the RLS doesn't wake me for those precious 3 hours.
Hi agreed , it's the amount of substance that enters the systemic circulation or organ/cell of interest which is the important factor with any form of food suplimentation or poisoning. In your gut the stomach is oxidising and acidic whilst the upper intestine where absorption takes place for most substance is neutral/ reducing and full of helpful bugs. Under the latter conditions iron tends to complexed or insoluble so absorption into the blood is poor.
As stated taking care with when you take supplements and adding a promoter such as Vit C or citric acid juice can help. Although it could be argued that the by the time the supplement gets into the upper intestine the impact of adding vit c or citric acid will be minimal. There are some claims that iron and other minerals in the right form can be absorbed in the mouth and a company in the UK markets a supplement based on this. However, I could not seem to find much sytematic evidence to prove iron absorption. A try it and see?
Hi I did a study on geophagy (deliberate ingestion of geological materials) in Africa ( Smith B, Rawlins B, Cordeiro M, Hutchins M, Tiberindwa J, et al. The bioaccessibility of essential and potentially toxic trace elements in tropical soils from Mukono District, Uganda. J Geol Soc London. 2000;157:885–891) to get the reccomended daily intake for a young adult taking into account bioaccessibility (% of intake available for uptake into the systemic circulation) required the ingestion of around 70g per day (the soils are iron rich). This was not far off the actual amount ingested. Interestingly termataria soil was the preffered source which had the highest amount of bioaccesible iron. We also looked at the possibility of Magnesium intake as a driver for geophagy.
It's also interesting that there seem to be systematic variations in the natural ratios of iron isotopes in foodstuffs, populations, human tissues and by sex (Natural Iron Isotope Variations
in Human Blood
Thomas Walczyk1
and Friedhelm vonBlanckenb)
For my own iron issue I tend to use Ferrous Fumarate 210mg with some orange juice. The oral spray was by "BetterYou" not sure how good it is. I've just had a blood test so might get some idea soon if impacting my RLS for me probally a minor issue commpared to the antidepresent and antihistamines.
Just a comment on proton pump inhibitors. I need something to overcome gastric reflux and consequent heartburn. I've had it for 65 years and its always been somehow associated with RLS. However recently I had a gastroscopic examination and the gastro expert says that the acid has scarred my esophagus. This is apparently potentially serious as the scarring can be a precursor to cancer. Samples were taken and found not to be cancerous - so far so good. He prescribed a proton pump inhibitor (PPI) I will get another re-examination after a few months of taking the proton pump inhibitor to see what's what.
I changed experts in the middle of this as I lost confidence in the first one so there is room for some confusion.
I told my "good expert" that I didn't want a PPI because of the interaction with the RLS. He was adamant that even if I wasn't having the heartburn pain I could still be damaging my esophagus and he saw this as a bigger risk than perhaps a small amount of RLS, a definite risk.
So he prescribed two PPIs One a long term drug Pantoprazole 20mg and the other a short term (8-10 hours) to be taken before bed (Nizatidine 150mg) These haven't affected my ferritin level yet so he might know what he's doing. If you are having any sign of acid reflux it is probably worth following up and monitoring the condition.
Every doctor tells me I should (of course) be having a gastroscopy and an endoscrophy every couple of years to inspect for anything unhealthy like cancer. Who has time for all the examinations we really need to live to a ripe old age.
The problem with specialists is that their specialty is their only hammer so every problem looks like a nail. If I went to a surgeon for my RLS I can just imagine them reaching for a scapel to remove my faulty legs!
Once again your answer is like a chapter in the text book on RLS. Why dont you write it? I'd even pay for it so you might become rich and famous. I always wanted to know someone who is rich and famous.
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