Yet another night of writhing around, getting up, lying down, getting up , lying down - on and on and on it goes, I really feel like there is a monster inside me when this happens. Fell off the bed, hitting my coccyx, head and elbow. I don’t understand pregabalin- 3 nights of ok sleep then three nights of hell. Felt so awful took a clonazepam half way through the night but still no relief. Recent blood test shows ferritin at 98, iron binding saturation at 37, serum iron 19.1. Cholesterol has risen from 3.4 when tested 5 yrs ago to 6 now. Feel overwrought and saddened by what has become of my life. I know I need to change the medication but I am scared to go the opiate route and put off trying da’s from what I have read on here. What a curse this is and a real dilemma for me. You just feel so alone when this happens.
the monster inside me : Yet another... - Restless Legs Syn...
the monster inside me
Hi Som, are you on HRT or an SSRI or a calcium channel blocker?
Thanks for your response, no I’m not on any other medications.
Ok, I see you will be starting oral iron, but it’s important to understand something. RLS has very little, if anything, to do with your body’s level of serum ferritin. That is why the infusion did nothing for your RLS, nor does it do much for others who have had one, unless they are anemic. What RLS is related to is serum iron. Serum iron is that free-floating, non-stored iron that circulates in the blood. By day, human’s serum iron is fairly plentiful, by night it drops…a lot, and we get RLS. By taking a highly bioavailable form of iron, such as ferrous bisglycinate, before bed, you are raising your serum iron and should also be relieving your RLS, if you’re like me and many, many others on here. If it’s gonna work, it will from that very first night. If it provides only partial relief, you may need to up the dose. If you take the iron every other night then you will only be relieving your RLS every other night. Serum iron is the grease and glue that keeps our dopamine receptors chugging along.
Good luck! You may even be able to reduce the Pregabalin 💫✨
Btw, melatonin and Benedryl will also make your legs go crazy. This is just an FYI. There are multivitamins formulated specifically for night time that may contain melatonin, but are usually clearly marked as such.
Thanks for that, everyone’s comments are really appreciated 💛
Since you may undertake an oral iron regimen, I want you to understand a little bit about why it works so well. Here’s my reply to another member:
“Flora, serum iron is important in the sense that it is much lower at night (in all humans) and that is the reason RLS acts up at night.
Serum iron is the grease and glue that keeps people’s dopamine receptors chugging along. We rely VERY heavily on that serum iron because the RLS brain (not body) has a problem storing iron for a rainy day, or should I say night ;). The non-RLS world has plenty of “brain ferritin.” Tests on the RLS brain have shown many of us have close to 0 “brain ferritin”, but plenty of unstored brain iron - maybe even more than the non-RLS world. Serum iron is simply this kind of free-floating iron that isn’t stored. Sadly, no matter how high that free-floating brain serum iron is by day, it drops precipitously at night and we get symptoms of RLS. Brain and body serum iron start to drop early evening and are lowest at midnight.
The non-RLS world can make a withdrawal from their plentiful “brain ferritin” when brain serum iron falls… and not even know what RLS stands for. I think I hate them. We on the other hand are left high and dry at night.
Sadly, unless you’re anemic, raising “bodily” stores of “ferritin” does little for our RLS symptoms. We’ve seen people with VERY high ferritin (400+) with severe RLS and people with low to normal ferritin (18+) with mild symptoms. There doesn’t seem to be a direct (if any) correlation between body ferritin and brain ferritin and symptoms of RLS.
All hope is not lost. MANY many people find relief by taking around 56mg of ferrous bisglycinate, about two hours before bed, on an empty stomach. It should relieve your RLS symptoms that very first night.
Good luck!
Please keep us posted.”
As DO asks, are you taking any other prescription or OTC meds or supplements? As well as common triggers such as statins and HRT, this list of Medications to Avoid from RLS-UK:
"A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.
In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.
Cold and Flu remedies and Anti-Histamines:
Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed.
Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.
Anti-depressants:
Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.
Anti-psychotics: Most anti psychotics worsen RLS.
Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):
Citalopram (Cipramil), Duloxetine (Cymbalta), Venlafexine (Efexor), Escitalopram (Cipralex), Paroxetine (Paxil, Seroxat), Fluoxetine (Prozac), Nefazodone (Serzone, Dutonin, Nefadar), Sertraline ( Zoloft, Lustral), Dapoxetine (Priligy), Fluvoxamine (Faverin), Vortioxetine (Brintellix).
Tricyclic medications:
Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.
Antacids:
Most Proton Pump Inhibitors worsen RLS. Omeprazole, Lansoprazole, Pantoprazole, Rabeprazole, Esomeprazole.
Anti Nauseates:
Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide, will trigger RLS during and after surgery. Safe alternatives include odansetron (Zofran), domperidone or granisetron hydrochloride."
Thank you Chris, no I haven’t been taking anything else.
Wow, good job Chris! Very comprehensive.
You don’t seem to harangue people about taking magnesium the way I do iron. Why?
Magnesium continues I think to help me - although I'm currently down from a high of 600 mg a day to a solitary 200 mg pill - but I know that for example it doesn't help even my brother.
I'm unsure that the changes I made to meds and diet etc after Mg seemed to *stop* working for a while haven't become more important than the magnesium itself. Certainly I've found that the effects of magnesium are easily neutered by poor choice of other meds, unwise diets, etc etc.
I probably should still mention it more often, because it certainly made a huge difference when I first started taking it....
GreekStudent and many others swear by it. I try to always recommend it.
We haven't heard from Greekstudent for 6 months: presumably it's because the magnesium has continued to work!
🌈💥🌹
Magnesium is widely viewed by the public as an essential treatment for RLS, but a recent well-conducted systematic review found no conclusive evidence to support its widespread use by the public.41
41 Marshall NS, Serinel Y, Killick R, et al. Magnesium supplementation for the treatment of restless legs syndrome and periodic limb movement disorder: A systematic review. Sleep Med Rev 2019;48:101218. doi: 10.1016/j.smrv.2019.10121
And as Joolsg has previously Replied to you, low dose opioids can be taken for RLS very effectively without leading to addiction:
healthunlocked.com/rlsuk/po...
Yes, I do appreciate that but it is still a big step as once you go down that route there are no alternatives as far as I can see.
I felt exactly the same way until Jools convinced me that Buprenorphine was the safest way forward. I followed her advice and found a sympathetic GP, and with a dose of only 0.2mg daily my symptoms have completely resolved and I have my l life back. Honestly you get so desperate for sleep you get to a place where even opioids, about which we have all heard so many horror stories, seem preferable to a life without sleep. On the microdose that seems to work for most people, I can't see a problem with addiction. But tbh I'd happily take a bit of addiction if it gave me the quality of life that Buprenorphine has. It literally had been miraculous for me and many others on this forum.
Hi Claire, that's really thoughtful advice that I will think about, thank you very much 
And are you already avoiding sugary, artificially sweetened, caffeinated food and drink in the evenings (although some find that caffeine helps)?
Yes, I only have one coffee first thing in the morning and have almost cut sugar out completely.
It is strange that you can have 3 good nights and then 3 bad nights. It does seem like you are doing something different on the bad nights or taking some medicine that makes RLS worse although even then it should affect you on all nights. However, if you are taking any medicine or OTC and you list them I can tell you whether they make RLS worse and perhaps give you a safe substitute.
It's possible you need to increase your clonazepam. Add 25 mg and see what happens.
If that doesn't help another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.
When you had your iron infusion after a couple of months did your RLS improve?
In any case your serum iron is low and your ferritin is not as high as it should be.
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.
Take it every other day, 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, calcium 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 tumeric 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.
Thank you. Yes it is strange but that seems to be the pattern with me even if I try very hard to keep things pretty much the same every day. I take a miltivit whem I remember but nothing else. I was considering increasing the pregabalin but the 300 dose already makes my muscles twitch a lot which is worrying. I have tested taking it at different times but 2hrs before bed is what I stuck with. I can take more Clonazepam but I think I will have to keep increasing the does as I will probably become habituated. The iron infusion didn’t improve the RLS but it did seem to give me more energy and positivity. I will start taking the iron as advised and will look into dipyridamole and the piece by sergi fern. Thank you.
Dear Sue, thanks for your advice. I watched this You Tube video by Dr. Garcia, he seems to be saying that dipyridamole worked well for people using this medication to treat RLS for the very first time and not for those that have been on other RLS medications. Have I got that right? youtube.com/watch?v=XuIRPVN.... The trial was very small.
The ones on this forum that have found it helped them were on other medicines for RLS first.
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