I was diagnosed with RLS which started shortly after after 2 emergency surgeries I had in late 2021. I assumed I might need iron supplementation, (as I had some blood loss) after reading about iron and RLS, and so I requested a ferritin level check-up from my clinic. It was 31. The doctor I saw at my clinic whom I’d never seen before told me that was a good level.
Nevertheless I did take some iron (floradix) for about a month anyway. My symptoms did improve briefly but then they returned off and on. It’s affecting my sleep and wellbeing too much…
I have since done some more research and read that RLS experts recommend one’s ferritin be over 100!
What??!
I admit I feared the drugs he wanted me to try due to the risks of augmentation or side effects. I’ve taking a Gaba (pharmagaba) and a magnesium supplement, which do not seem to make a consistant difference.
The symptoms come and go in weird ways for which I can’t find any clear explanation. I feel frustrated but hope to learn more from fellow sufferers. Thank you …
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Friend7
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On your iron: take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. 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 have problems with constipation switch to iron bisglycinate. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine take it at least 4 hours apart. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months and when you do stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. If you didn't stop the iron tablets last time, your ferritin may have been higher than it really is. Also floradix has only 10 mg of elemental iron and you want much more than that. 325 mg of ferrous sulfate has 65 mg of elemental iron. And yes, most doctors are not knowledgeable about RLS and will tell you your iron is fine, because it is fine for normal people, but not those of us with RLS.
If he wanted you to try dopamine agonists like ropinirole and pramipexole, you were wise to refuse them because of the risks of augmentation. They used to be the first-line treatment for RLS but no longer are because of that. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 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. 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 of gabapentin and pregabalin 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) daily." Since you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of the gabapentin (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 uptodate on it atHttps://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you so much for sharing that valuable information. You are very kind to take the time! So you know a bit about my lifestyle I’ve long been committed to health and vitality, and to eating a very healthy varied diet in my life. Ive raised a family and cook, and I enjoy eating organic whole foods, a variety of vegetables and fruits, grains, nuts, seeds, cultured probiotic foods, olive and avocado oils, org dairy, fish and naturally-raised meats etc…. Im well educated in nutritional health, and Ive always tried to avoid inflammatory highly processed foods, fast foods, sodas, high sugar foods, bad oils, etc, etc….
I do take supplements and it’s a rather long list currently:
Magnesium - I usually I take nightly mag biglycinate (at bedtime). I’ve been trying a new product lately for 2-3 months w/ mostly magnesium glycinate plus mag oxide AND pharmagaba 100mg and Jujubeseed extract. But I’m concerned if the gaba is helping or hurting my RLS issues ?
Daytime supplements:
vitamin D3 5000 iu; Ubiquinol (coQ10); K2; zinc, calcium, a natural plant fiber supplement w/ psillium & other mixed seeds; Bergamot; curcumin (Tumeric) w/ resveratrol; oméga 3 fish oil; medicinal mushrooms (Host Defense) : cordyceps, reishi, lions mane, & a mixed mushrooms immune support blend; Occasionally I take collagen, biotin, or keratin. Also Boswellia for inflammation.
I use topical and internal CBDs. I do suffer from arthritis in my body so I’m always experimenting with natural anti- inflammatoires. I do not, and cannot use NSAIDs.
For sleep issues over the years I’ve experimented with various herbal supplements, and with CBD in recent years (mostly Ive had bad luck with melatonin, which initially works but then weirdly often stops working for me completely after a few days’ time and then seems to keep me more wide awake in the night!) Maybe i should try a time-release very low dose?
My response to any sleep remedy seems to vary tremendously. Except when I’m been struggling with the horrors of RLS in the past year, I’ve mostly been able to fall asleep easily but had trouble staying asleep later in the night. Now it’s both issues - but not every night.
In the past 3 years I’ve experienced more with CBD tinctures at night in addition to magnesium glycinate. (I’m starting to experiment with CBD lozenges along with a tiny dose of THC (legal in my state at dispensaries,)
For many years I’ve also taken bioidentical compounded hormones: estrogen, progesterone and testosterone - in the form of troches (sublingual delivery) Est/T 2x daily and progest only at bedtime. These hormones have been carefully monitored by a naturopath, and i feel they have been very valuable to my overall health and well-being as a woman.
OTC meds: I’m prone to GERD partly due to a hiatal hernia so I use Rolaids and Pepcid AC occasionally . I also take Zyrtec occasionally as my allergies have worsened. Could Zyrtec be a problem for RLS?
Zyrtec is fine. Pepcid makes RLS worse in many people. Rolaids are fine. Estrogen makes RLS worse in many people. Melatonin makes RLS worse in many people. Collagen can make RLS worse in many people.
Iron levels can vary quite wildly from person to peson and the fact that some people with high iron levels suffer from rls while others with low levels do not, suggest that it's not the whole story. In fact rls if far more connectected with the levels of systemic inflammation in the body which mostly relates to the food we eat, which is why your rls varies from day to day. The foods that affect systemic inflammation are high gi foods like those made from white flour and refined sugar. Another cause is refined seed oils and just found out that another can be high cortisol levels.
Thanks so much for the response and your sharing Eryl! Yes, I understand about inflammation, and RLS and the importance of avoiding a pro-inflammatory diet in general. Yet I also suspect that this issue is quite complicated. Cortisol is a very interesting factor that makes complete sense to me. Stress in this life is inevitable after all, for everyone. I have had a quite stressful year. Also, aging in itself is probably another component of this RLS puzzle…and being born a woman apparently is another risk factor!
So you know, I’ve followed a mostly healthy diet of natural Whole Foods most of my life. I do not typically eat any highly processed food or many sugary foods. But, I’m not a saint either, and life is short and precious… so I do occasionally enjoy a piece of quality dark chocolate, or a much rarer homemade treat! I will indulge in a glass or two of red wine with dinner.
Yours is another instance where iron deficiency - probably due to an overload of inflammation (affecting iron absorption). Fire up iron supplemental as Sue suggests. My severe RLS (ferritin 49) basically went away in one month (ferritin 105 within 3 months) with daily Ferrous Bisglycinate Chelate supplement. The fact that Floridix helped (with 10mg of iron - ferrous glutamate) points to an iron deficiency. I would try supplements before ANY additional drugs.
You may not need meds. After the surgery, were you on opioid painkillers like Oxycontin? Reducing those can trigger opioid withdrawal RLS in many. It usually settles a few months after you stop the painkillers.In your case, the surgery trauma and blood loss seem to be main culprits.
As Sue Johnson advises, take iron supplements and hopefully your RLS will settle.
Keep a diary, the RLS UK website has one you can print off. It will indicate the severity of your RLS.
Are you on any meds that can trigger RLS like anti depressants, anti histamines, statins, beta blockers or gastric PPIs? If so, you should discuss safe alternatives with your Doctor.
I would advise anyone new to RLS to steer clear of ANY prescription drugs, including Gabapentin or Pregabalin, to treat RLS until you have exhausted all other avenues.
1. Look at iron supplementation as Sue and others suggest
2. If you take magnesium supplements make sure it's either Mg Glycinate (bisglycinate/diglycinate) or Mg Citrate and take enough. Glycinate can also aid sleep and doesn't cause diarrhoea; Citrate can cause diarrhoea if you take too much, but US packaging that suggests 1x100mg tab a day is too little. I originally took 3x200mg tabs spread out through the day, but am now down to 2x200mg - 1 in the morning and and 1 at lunch times. I find that if I take both tabs at the same time that can cause diarrhoea, but this varies from person to person. Don't take magnesium frequently if you have poor kidney function.
3. Look at your diet: too much sugar, artificial sweeteners, highly processed foods, etc, and in some alcohol and caffeine, can all trigger RLS. Aspartame and other sweeteners were my bete noire.
4. Look at other meds you are taking: Sue and Jools both suggest you list everything that you're taking so that we can advise you.
Ultimately you *may* need RLS meds once you've tried everything else. But beware: too many doctors and neurologists are ignorant about RLS and appropriate meds, so take advice here before embarking on anything.
Hi Friend, our lives sound similar. Anyways, I wanted to mention that ferrous bisglycinate stops my RLS in one hour for one night. Has to be taken on an empty stomach at least one hour before bed. If I were to take ferrous sulfate it would not work because it is not bioavailable enough. Nor would it work if taken in the morning or afternoon. RLS = a lousy dopamine transport system (DAT)and low levels of stored brain iron. The good news is our brains are clearly able to suck iron up from our blood…called serum iron. That serum iron plummets dramatically at night and we get RLS. The non- RLS world with their normal DAT and healthy brain iron stores are not bothered by this drop. Give it a go! These members did:
Here were triggers for me. Caffeine, sugar and dairy. Gabapentin was useless for me. I was on Ropinerole for a few years but the nausea was awful and had limited results. Mt latest Dr. tried me on a tiny dose of Methadone (5mg/day). It's been about 5 months without a episode or side effects. It literally saved my life. The breakthrough episodes, the nausea, the constant fear of augmentation, I was within weeks of suicide. Now I can get 10 hrs sleep.
Hello Friend7. I’m not sure this information will help you. I only had occasional mild RLS until I started bio identical hormone replacement. After starting HRT my RLS became chronic and extremely intense. I sincerely wish I could continue with HRT but it makes my RLS unbearable.
Also, for me, the slightest amount of alcohol (any variety) puts my RLS into overdrive.
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