need help desperately. haven’t slept ... - Restless Legs Syn...

Restless Legs Syndrome

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need help desperately. haven’t slept in a week

aug27 profile image
22 Replies

hello,

I’m currently 28 weeks pregnant and have very severe restless legs to the point that I just need to keep walking around my house all night long. I’ve had them prior to pregnancy but never this severe. My dad also has them. It gets so so exhausting and frustrating. I’ve had multiple breakdowns over this. Even when the sun comes up, it’s difficult for me to stay asleep. I recently went a week without sleeping the slept for 4 hours finally. It’s not good for me or baby. My diet isn’t great because I have no energy to cook or plan meals and to be honest I don’t really have an appetite. I also was diagnosed with gestational diabetes very recently. It was just over the threshold so it’s not too bad.

Current medication/supplements: pregvit, magnesium glycinate (200mg), vitamin B6, doxylamine-pyriodoxine for nausea (10mg), teva-setraline (25mg) — trying to wean myself off of this as I’ve heard it aggravates RLS.

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aug27 profile image
aug27
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22 Replies
amrob123 profile image
amrob123

(As you acknowledge to an extent) your first step would be to come off anything that is potentially aggravating your RLS. Sertraline for sure, and possibly glycine/glycinate as some people find this aggravates their RLS. (Reduce the sertraline slowly and on doctors advice).

The second step would be to have ferritin levels checked. Ideally you want it to be above 75. Many people find that their RLS worsens in pregnancy, and some people get near or complete relief by increasing iron levels via oral iron or infusion.

ONLY after doing both those things would you consider medication for RLS. The Mayo Clinic guidance on RLS in pregnancy is as follows:

Clonazepam 0.25 to 0.5 mg before bed can be considered in the second and third trimesters. This drug should not be combined with antihistamines or anticonvulsants in pregnancy. Carbidopa/levodopa 25 mg/100 mg or 50 mg/200 mg controlled release can be considered. The alternative dopa decarboxylase inhibitor to carbidopa, benserazide, should not be used because of the risks of congenital malformations. Augmentation is common with levodopa, and patients should be monitored for this adverse effect. Oxycodone 5 to 10 mg before bed can be considered for severe, refractory RLS in the second and third trimesters, but the neonate would need to be monitored for symptoms of opioid withdrawal.

Personally, i wouldn't touch carbidopa/levodopa in pregnancy but would consider clonazepam or oxycodone if my mental health was suffering badly.

It's often too late that people find out just how problematic certain drugs can be in pregnancy. Doctors often say medications are low or moderate risk but there are still many unknowns in terms of neurodevelopmental impacts.

Prenatal exposure to drugs is one of the important issues that impact the CNS development of a fetus and, subsequently, his/her future behavior. Experimental and animal studies offer evidence that prenatal neurodevelopmental insults continue to involve fetal, neonatal, infant, and childhood CNS development

I went through severe RLS/PLMD in pregnancy and know first-hand how very challenging it can be. If i were to experience RLS in pregnancy again, i'd be asking myself "is the potential lifelong impact of environmental toxins on a developing fetus worth it for a few months of being RLS free?"

Please don't construe this as me telling you to not take medication. All i'm saying is think carefully about it.

Classof69 profile image
Classof69

please try a natural way, over the counter Seratame, pure biogenics out of Carlsbad ca. # 877 269 2694. I had RLS, every 8 seconds everyday of my life last 10,12,14 years. Longest time 6 days without sleep, rest, sitting, or leaning on something. I had to walk every minute of those 6 days. Then things got worse, doctor said I was augmenting and took everything away. Lucky for me I was eight days or so in with Seratame. I also take 1 100mg of b6 and 1 tablet of magnesium citrate. 15 days it was so much better, month in it is gone. Slight trace in the morning when I wake but walking for a couple minutes it’s gone.

SueJohnson profile image
SueJohnson in reply to Classof69

Seratame should not be taken during pregnancy because it contains passion flower.

BeachGolfer profile image
BeachGolfer in reply to SueJohnson

Sue, does passion flower exacerbate RLS?

SueJohnson profile image
SueJohnson in reply to BeachGolfer

No. It is used for stress, insomnia, anxiety, and depression.

SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here.

Iron is the most important thing you need in pregnancy as both you and the baby need it. 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 and 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.

Even if you have had it checked in the past and it was over 100, you need it checked now while you are pregnant.

While you are waiting on the test and its results I would start taking iron. 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.

I would also take the probiotic strain Lactobacillus plantarum 299 as it will help the 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 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 or at least take it in the morning if you take your iron at night. 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.

Unfortunately RLS gets worse in the third trimester.

I would not take carbidopa/levodopa nor any other dopamine agonist. Yes you may need a low dose opioid but I would avoid it near the time of delivery as Amrob said because of the danger that your baby would need to be weaned off it.

Do not take Aspirin – unless specifically prescribed by your doctor nor Ibuprofen nor most herbal products like passion flower and boswellia, nor glycine powder. Do not drink more than 1 and 1/2 cups of coffee.

Do not take Seratame as it contains passion flower!

If you have a thyroid condition it is especially important that it is treated during pregnancy.

The RLS foundation has a handout on pregnancy. You can join for $40 and they have a monthly magazine. It is well worth it.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in .

Classof69 profile image
Classof69 in reply to SueJohnson

Sue I want to talk to you. Don Delano 530 318 7788

SueJohnson profile image
SueJohnson in reply to Classof69

Send me a message on this forum. Use the chat button.

DocCookie profile image
DocCookie in reply to SueJohnson

Hello, Sue,

First of all, you have been so very helpful in addressing RLS. I am not pregnant, however, the sleep doc checked my Ferritin and I am in the normal range (16-288) but at the low end which is 92. This 92 score of Ferritin is below 100, and I am wondering if you would recommend trying to bring the level up. If so, do I take OTC supplements, or is there a prescription version that you recommend. Thanks. Marsha

SueJohnson profile image
SueJohnson in reply to DocCookie

Yes I would recommend bringing it up.

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 or at least take it in the morning if you take your iron at night. 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.

DocCookie profile image
DocCookie in reply to SueJohnson

Thank you so much, Sue for your valuable information. Much appreciated. Marsha

Joolsg profile image
Joolsg

RLS rears its head during pregnancy and for many, doesn't go away.The most common reason is low iron. Your serum ferritin needs to be above 200ųg/L ideally. Pregnancy uses up 1000mg of iron so it is essential you take supplements or, better still, arrange an iv iron infusion. The NHS may be difficult, as they're short of funds, but ask if you can arrange one privately ( if you can afford it).

Sertraline is a common trigger, so reducing that will help. Go slowly. If you were taking it for anxiety, you could switch to a low dose of benzodiazepene.

The anti nausea med you are taking is probably also a trigger, but if you have severe pregnancy sickness, you will need to discuss safe alternatives with your GP and hospital doctors. Zofran is an RLS safe anti nausea med.

I know how you feel. RLS during pregnancy is terrible. You're exhausted, but cannot sleep.

Do make a 20 minute appointment with GP to discuss all your options.

SueJohnson profile image
SueJohnson in reply to Joolsg

The anti nausea medicine she is taking is safe for pregnancy.

Joolsg profile image
Joolsg in reply to SueJohnson

Thanks Sue. I'll add to safe list.

Marlayna67 profile image
Marlayna67

hi there. I am so sorry to hear you are suffering with RLS during pregnancy. I also had gestational diabetes with my first pregnancy. I had extreme hypoglycemia during my second pregnancy. My third and fourth pregnancies were uneventful, sugar, wise, but somewhere around there, I developed permanent RLS.

Sounds like you have some great advice here from our very knowledgeable forum members. My advice would be to find an eating and exercise pattern that works for you and stick with it to the end of the pregnancy. I know it’s hard, but you have a lot of support here.

hopefully the end of the pregnancy will also mean the end of diabetes and RLS for you!

DicCarlson profile image
DicCarlson

The growth demands of the fetus "rob" the mother of iron stores. The pregnancy connection to RLS confirms a high place for the brain iron deficiency hypothesis in RLS. Discuss with your doctor iron supplementation options. Many RLS sufferers use Ferrous Bisglycinate Chelate as a non-constipating option.

Drls profile image
Drls

hello are you in the uk? If so you can get an iron infusion at the iron clinic in Harley street - I had one recently - the price varies but I paid £200 for the consultation (ask for dr Toby Richard’s for RLS) and £370 for the iron infusion.

I first had extreme rLS during the last trimester of my first pregnancy 32 years ago…. Dr Richard’s comes from a different medical background (cardiac I think) but suspects that had I had an infusion then (I was very anaemic) my body probably wouldn’t be behaving as it does now - ie severe rls all the time - so I would really consider it…..the process is very straightforward however it can take some weeks to see the benefits and I only had it a week ago - so I’m not seeing much of an improvement - yet…..

notnowdad profile image
notnowdad

I am not a medical professional or a scientist. However, I think I have worked out a plausible explanation for what causes RLS and how to get relief from it. RLS results from a malfunction of iron distribution in the body. Taking iron supplements sometimes mitigates the problem but doesn’t cure it. The problem is due to overproduction of oxalic acid in the body, primarily in the liver. Oxalic acid is a waste product that our bodies are constantly disposing of, primarily in our urine. Iron is normally bound to transferrin, our body’s iron distribution vehicle, by another chemical called carbonate. When there is an excessive amount of oxalic acid in the body, the oxalic acid displaces the carbonate in the binding of the iron to the transferrin. When oxalic acid is the binding agent, the iron becomes “locked up” and doesn’t release properly from the transferrin.

The problem of over production of oxalic acid in the body is made worse by eating foods which are high in oxalic acid in the form of oxalate. A Low Oxalate Diet (LOD) can provide substantial relief. Most people who have successfully implemented a LOD report about 90 to 95% relief of RLS discomforts. Most people who fail to get relief by following a LOD, do so for two reasons. The primary problem is that many of our fresh fruits and vegetables in the grocery store have been sprayed with oxalic acid solution because it “preserves freshness and nutrients”. Fortunately organic fruits and vegetables are not so sprayed.

The second problem which defeats success with a LOD is that most of the websites offering information on LOD’s say that, because meat products are virtually oxalate free, they are all safe to eat as part of a LOD. Some years ago when I had achieved relief from RLS by following a LOD I noticed that magnesium glycinate was definitely a trigger that caused me to have RLS discomforts. This led to my noticing that gelatin and gelatinous soups and stews, which are high in glycine, also caused me to suffer with RLS. In recent years some of the websites have started mentioning that scientists have recently discovered that eating gelatin raises urinary oxalate content.

If you attempt to mitigate your RLS discomforts by following a LOD, be aware that your discomforts may initially get worse. Some people say this happens. The explanation is that our bodies have stashed excess oxalate in various places in the body as a coping mechanism. Then, when the individual limits their dietary intake of oxalate, the body starts removing the stashed oxalate in a process referred to as “dumping”. I didn’t personally experience it and many of the people who have followed my advice don’t seem to have noticed it either. However it may be a reason why some people don’t get immediate relief.

Two more supplements to avoid are collagen and vitamin C. Collagen is an obvious “avoid” because of its high glycine content. Vitamin C supplements are widely recognized as causing a rise in urinary oxalate and should be avoided by people needing to follow a LOD. This problem with vitamin C indirectly supports my theory that RLS sufferers are over producing oxalic acid. Oxalic acid is produced as a waste product of a bodily chemical process known as the Citric Acid Cycle (CAC). When the CAC is malfunctioning vitamin C supplements exacerbate the problem.

My success with using dietary modifications to subdue my RLS, led me to do more experimentation with other dietary modifications that might further enhance my well being. I found that when I simultaneously avoided both fluoride and the refined, bleached and deodorized cooking oils made from seeds, (soy, corn, canola, etc.) I went from being a person with very severe allergies to seasonal pollens and dust mites to being a person without allergies. Now that I have been following this very difficult protocol for more than 3 years, I seem to have completely healed myself from RLS and no longer need to worry about oxalates. This latest success has led me to the belief that fluoride, particularly the extremely toxic form in most non-stick cookware, can liners and pesticides, is what causes disruption of the CAC and overproduction of oxalic acid. I have found an explanation of the hyperoxaluria and resulting oxalosis caused by an anesthesia called methoxyfluorane which suggests that the causative agent is the effect of the “free fluoride” on the liver. Many of our common medicines contain fluoride because it creates a “time release” character which probably contributes to this problem. I have also found science that suggests that, because RBD seed oils are sometimes poorly absorbed in the small intestine, they can inappropriately carry bile salts into the large intestine and damage the colonic mucosa in a way that leads to the inappropriate absorption of oxalate from food.

I don’t often post on this website because most of the readers here aren’t interested in my information. My current focus is trying to get research scientists to pay attention to my approach. I hope you and your baby can benefit from what I have learned. You can find other posts of mine on the rls.org discussion board for dietary approaches.

ChickenTwisty profile image
ChickenTwisty in reply to notnowdad

The evidence supporting the effectiveness of the LOD specifically for RLS is limited and mixed. When considering dietary modifications such as the LOD during pregnancy, several factors need to be taken into account:

Nutrient Intake: Pregnancy requires adequate intake of essential nutrients to support the health and development of the fetus. Adopting a low oxalate diet may potentially restrict certain foods that are rich in nutrients important during pregnancy, such as leafy greens and whole grains. Therefore, it's essential to ensure that any dietary changes do not compromise overall nutrient intake.

Consultation with Healthcare Providers: Pregnant women should consult with their obstetrician or healthcare provider before making significant changes to their diet, including adopting a low oxalate diet. Healthcare providers can offer personalized guidance based on the individual's health status, dietary needs, and any pregnancy-related complications.

Safety of Dietary Interventions: The safety of specific dietary interventions during pregnancy, including the LOD, may not be well-established. Limited research exists on the effects of a low oxalate diet on pregnancy outcomes, so caution is warranted.

Alternative Treatment Options: Pregnant women with RLS may explore alternative treatment options for symptom management, such as gentle exercise, massage, hot or cold therapy, and relaxation techniques. In some cases, medication prescribed by a healthcare provider may be necessary and safe during pregnancy.

Sydney75 profile image
Sydney75

Anemia is more common during pregnancy. Please have iron levels checked. Friends daughter receiving iron infusion in hospital at 35 weeks, she was admitted until numbers went up.

anniekelnat profile image
anniekelnat

I’m so sorry for what you’re going through. I too, inherited RLS from my father and it was always worse when I was pregnant. Two years ago my daughter was pregnant and had it bad also. Fortunately, after delivery it went down for the both of us but it always comes back periodically. It’s a bleak future for us because it’s a fact that RLS gets worse as you get older. I turned 72 six months ago and it got to be nightly then. I take Ropinarole now, but a low dosage, just .5 mg and I don’t take it until 9pm. So far it’s working for me. Best of luck to you - wish I had some answers or suggestions for you.

vikkkk profile image
vikkkk

When it's bad I keep massage gun next to my leg and fall asleep like that! It turns off itself

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