I need help. I was prescribed metformin for weight loss I took 500mg for 2 weeks and then up’d it to 1000mg for a week then I got restless legs so I stopped taking it all together. My restless legs are severe and it’s affecting my arms and shoulders now. I am extremely uncomfortable and cannot rest and it keeps me awake until 5am-6am every night and I have a baby so I have to wake up at 7am every day and I’m not sleeping.
If it’s caused by the metformin, now that I stopped taking it will it ever go away? I don’t see the light at the end of the tunnel right now and I’m suffering. I just want my normal sleep back I want to be able to feel comfortable in my own body again. I’ve tried everything, magnesium, tonic water, compression socks literally everything. Someone give me hope that it will stop
Written by
Tiffkirsten
To view profiles and participate in discussions please or .
Some - including Shumbah who I've seen that you've Replied to - say that metformin is an RLS trigger, although others say not ("we're all different" as we used to say on here more often).
All sorts of other medications also trigger/exacerbate RLS: what other prescribed and over the counter medications are you taking?
Low iron levels are also a trigger for many: have you had a full panel iron blood test (preferably taken after fasting for 8-12 hours, preferably in the morning, and after refraining from iron supplements - if taken - for 48 hours)?
I’m not taking any other medication and this has never happened to me before taking metformin. After much research I know it caused this. I’m just trying to look for other people who are suffering from it like I am after taking metformin specifically and how long until they felt normal again. Because at this point in time I’m losing hope of ever feeling normal again. My whole body is restless now
The Mayo Clinic mentions all sorts of potential issues with metformin, including (rarely it says) restless sleep. "Although not all of these side effects may occur, if they do occur they may need medical attention. Check with your doctor immediately if any of the following side effects occur".
Hopefully someone with practical experience will be able to tell you whether coming off this led to relief within a couple of weeks or so as with some other medications.
I’m hoping I’ll have relief soon. I researched and say that restless legs was a rare symptom of metformin (lucky me) I just hope it didn’t cause permanent damage and I have to live with this forever because it’s extremely uncomfortable
Very sorry about your suffering. Are you taking any kind of birth control pill right now or hormones or an SSRI for post pregnancy depression? Melatonin is also a big no. Did you have Covid recently?
Try not eating after 7pm, and like Jools stated, try taking one or two capsules of ferrous bisglycinate on an empty stomach about two hours before bed. It relieves my RLS in one hour for one night. Do not take at same time as magnesium. I would take the magnesium during the day.
I used to take lexapro a long time ago but don’t anymore. My doctor is claiming going back on it would help with RLS but from my own research I heard that’s a bad idea because it can make it worse. I just started birth control again 3 days ago which is the same kind I was on before trying to get pregnant. My daughter will be 1 year old next month.
As I thought, birth control (and Metformin btw) should be great for RLS, in the long run, but incredibly painful while taking it. Anything that increases the number and density of our genetically lousy d2/d3 receptors, such as birth control, is something we with RLS really need. But it has to have a very short half life and be taken in the morning. This is probably more than you ever wanted to know, but this article talks about the fact that birth control increases dopamine synthesis. It’s great for the non-RLS world, but too painful for those of us pre-disposed to RLS.
Jaysus your doctor needs to do his research. Lexapro triggers /worsens RLS. That's basic RLS knowledge, but as it's not taught at medical school or during GP training, he won't know. I suggest you tell him to look at the Mayo Clinic Algorithm, or the NHS or NICE guidance in the UK. They warn that anti depressants cause RLS.
what is ferrous bisglycinate and how could I get it? My doctor sent over ropinirol for me to try but after looking at the dangers of it and becoming dependent I decided not to try it. Does the ferrous have any dangers?
Only if you have an iron overload disorder, such as hemachromatosis. It’s a very bioavailable form of iron. I use Gentle Iron by Solgar which I purchase on Amazon. It helps many people. I would use any iron you may have in the house for tonight or any kind your local drug store may have. See THIRD REPLY to below post:
Definitely don't touch Ropinirole !!! UK doctors aren't taught ANYTHING about RLS and Ropinirole is no lonher first line treatment amongst experts. Iron treatment via pills or infusions is.
I live in Florida and I’m upset that my doctor prescribed me it. I’m mad that she even put me on metformin that caused all of this too. She said “don’t look this up on Google people will claim metformin ruined their lives but they are just dramatic”
She's Gaslighting you. There is a very good sleep centre in Jacksonville. If the RLS doesn't settle, they will help and will prescribe iron infusions if necessary. Very few doctors are aware of meds that trigger RLS.
I really hope it settles within the next two months.
It's tough. Try to sleep or doze whenever and wherever you can. Dopamine cycle affects RLS and dopamine levels are highest around 6am and then decrease throughout the day. So your best chance of sleep/rest is between 6am and midday. If you have friends or relatives or a nursery, use them so you can get some rest. Whenever the baby is sleeping in the day, you sleep.Keep taking magnesium and ferrous bisglycinate at night.
Here in the UK we can buy a small dose of codeine over the counter.It is combined with paracetamol.
If you have a similar product, use it.
Kratom also helps to stop RLS, but it's illegal here in the UK. Check if it's legal in Florida and buy a small packet. Take a teaspoon mixed with boiling water in a cup and then add orange juice because it tastes foul!
Only use it short term because tolerance can develop and many people who start it end up taking larger amounts and then it's difficult to withdraw. It's an asian herb with similar properties to opioids.
But when you're desperate, and for a few weeks, it's a life saver.
Then, hopefully, the effects of metformin will have worn off.
You can also try an elimination diet.
A lot of people find diet stops RLS.
Paleo/keto
Very low carb, zero sugar, no processed food
Low oxalate
FODMAPS
Coffee actually helps many of us with RLS, contrary to what health authorities and doctors tell us. We all react differently.
You gave up coffee, so try it when you get the RLS sensations and see if it makes it better or worse.
Keep a diary and watch for RLS 2 or 3 hours after a meal or treat. Identifying triggers, if you have any, can help.
Hello, I live in the US in a state where kratom is legal, and have been taking it for my RLS for 7 years. I started after I was in a corner from augmentation, already taking maximum tolerated gabapentin, had a ferritin level of 160, but didn’t know how I could find anyone who would prescribe an opioid for me. Also, I was afraid to go down that road! It has been a life-saver for me. I have some things to add about using kratom.
First: kratom is what’s known as a partial agonist at the mu opioid receptor—very similar in that respect to buprenorphine, one of the opioids mentioned in the Mayo paper for use for refractory RLS. As those experts point out, when any opioid is used to treat RLS, it is rare for tolerance to develop, so dose escalation is also rare. People who use kratom for pain, depression, or to get a buzz, can indeed develop tolerance, and so need to take breaks from using if they are to avoid the trap of needing more and more. However, when used for RLS, tolerance does not develop. There is some variation in potency of batches, since it is just the ground up leaves of a plant, but the amount of the active ingredient needed stays the same, unless there is another reason for the RLS itself to get worse. I have not needed to change my dose since establishing the correct one 7yrs ago.
Second, if you want to try kratom, don’t go down to the local head shop and buy it there, please! You don’t know what you may be getting. There have been reports of those retail products being contaminated with lead, bacteria, or even fentanyl! It may also be cut with inactive ingredients. Instead, go to the website of the American Kratom Association, and buy it online from one of the vendors that has gone through the organization’s rigorous certification process where they have to prove they get it from reputable sources, and that each batch is analyzed by an independent lab for purity. The AKA is a US lobbying organization that works to keep kratom legal BUT safe.
Third: I would start with half a teaspoon. No need to put it in boiling water, unless you use it as a tea, rather than a powder. In that case, use hot, but NOT boiling water; the latter can inactivate some of the active compounds. Powder is more common and easily found. Stir it vigorously in juice, then gulp it down. Yes, it’s bitter. It doesn’t dissolve in the liquid, just suspends—that’s why you should drink it fast before it settles out again. You can get it in capsules or tablets, but it’s much more expensive that way. You can make up your own caps—pain in the neck! It typically only lasts for 3-4 hours, so you might need more than one dose. Don’t take it round the clock, though, because if your receptors get used to having it always on board, then you could develop withdrawal symptoms if you miss a dose, or even between doses. I take one dose in early evening, and a second before bed.
Tiffkirsten, I certainly hope you will soon go back to your pre-metformin, no RLS state, and all this will just be a bad memory. If indeed it was all just the metformin , then I feel sure you will. The body is very resilient! Neuroreceptors are living cells that grow and change. But I thought I would outline this much detail for other readers who, like me, suffer from severe RLS for many years.
Thanks for the clarification Berta.I used Kratom when it was still legal in the UK ( pre 2018). But I had been warned by RLS patients on here that tolerance developed quickly and to take breaks/change strains often.
It's encouraging to hear that you have stayed on the same low dose for 7 years without increasing the dose.
Do you have a pharmacist you can call and ask how long before the metformin is out of your system? Or perhaps there is a Facebook group for metformin. Praying you get this resolved soon. Momma needs her rest to take care of her baby!
Are you aware that up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
Dopamine agonists (DAs) which are what ropinirole (and pramipexole) are, are no longer the first line treatment for RLS. Read the Mayo link and be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Above you wrote two days ago “My whole body is restless NOW.” Meaning starting two days ago you developed restless body instead of just restless leg. That’s one day after beginning birth control. You went from the fire into the frying pan.
RLS doesn’t work that way - it’s not “caused” by substances. Scientists have autopsied and imaged the brains of people with RLS. We with RLS have very little brain ferritin compared to healthy controls and we have small and few dopamine receptors compared to controls. What all this means is that there’s less of that liquid gold (meaning dopamine) being hurled from our brains, down our spines (aka the central nervous system) and to our peripheral nervous system where it quiets our arm and legs. For a good portion of our lives many of us with this condition don’t even know we have it, until something triggers it. Almost every day some one like you comes on here and with a similar complaint. I never had RLS until I injured my spine. Yes, spinal injuries can trigger RLS because now that trickle of dopamine going down the spine is disrupted by that injury. The vast majority of the world can injure their spine and never feel a twinge of RLS. The vast majority of the world can take melatonin and never feel a twinge of RLS - not me. And maybe in my 20s I would have been ok taking it, and I think I probably did on occasion, but definitely not in my 30s. Melatonin does not “cause” RLS, it might even improve it, but it’s just too painful. a treatment. A lot of times people come here (usually at least in 40s) and they state they have RLS for first time in their lives and then we have to go through the whole litany with them. “Are you on SSRIs, calcium channel blockers, Metformin, statins, beta blocker, HRT” and yes birth control. 99.9% of the time they are on one of those substances. They stop the substance and disappear from the board. Oh well, another day saved. You started birth control before the Metformin was out of your system. If you put Metformin in the search box you will read about dozens of people who had their symptoms worsened by it. Metformin is “neuroprotective” not damaging and it’s been tested on Parkinson’s patients to see if it can stall or stop the damage the disease is causing to their dopamine transport system. It’s just so frickin painful to us that are pre-disposed to RLS. The vast majority of people in this world can take very high doses of Metformin (2500mg) for decades and never feel a twinge of RLS. Not you and not me and not the rest of us. Do you think I asked you about birth control for the fun of it? Of course not. I know any pill or cream or suppository with hormones in it will trigger or worsen symptoms.
If you doubt it’s that lack of dopamine that’s the problem then lay down in bed until your RLS is driving you crazy. Then have an orgasm and see what happens for anywhere from 3 to 10 minutes after.
hi Tiffkirsten i took metformin for 10 yrs and suffered RLS for all that time i was given 0.125 of lyrica which worked like a miracle for the ten yrs then i stopped taking metformin but still have restless legs my hubby is on metformin has been for 20 years no restless legs there just depends on who you are and how it affects you ..... whats normal i dont know what that is sorry i hope you return to your safe place dont take pramipexole though [ sifrol ]
Okay. That’s why I made my own post so that hopefully other people will see it dealing with the same thing and help me. I’ve had 3 hours of sleep in the past 3 days total and I have a baby to take care of. I’m suffering. I’ve tried EVERYTHING. Magnesium, tonic water, ibuprofen, massages, exercise, no caffeine, etc and I don’t see an end to this and no one seems to be able to help me and my doctor isn’t taking me seriously
A week isn't long to have tried and discarded that list, and some - like tonic water - were most unlikely to have helped. And again - have you had a full panel iron blood test, preferably taken in the morning, preferably after fasting for 8-12 hours, and after refraining from iron supplements - if taken - for 48 hours? Iron is a major issue in RLS for many, and doctors don't know enough about RLS to advise you properly - you need to get the ACTUAL numbers and report them here for advice, not just a laconic "it's normal' response from the doctor. And what kind of magnesium did you take, and how much?
I have a blood test on Tuesday. But I am 100% sure that the metformin caused this I never had restless legs in my life before starting it. And a week seems like a long enough time being off of it for any symptoms caused by it to be gone in my opinion. I’m taking 500mg of magnesium glycinate. I’ve always taken vitafusion multi vitamins as well in the past couple of years. And while I was on metformin I took b12 supplements and iron supplements because I was told it could cause deficiency in those. Now that I’m off of it I don’t understand why I still have restless legs and why they are becoming more severe I feel like metformin ruined my life
While a week can feel like a lifetime I think that you need to give it another week or two to work out of your system: torture I know, but hopefully you will recover.
Make sure that you fast before the blood test and refrain from the iron supplements - that will give the most accurate results. And insist on seeing the numbers: doctors will say that a ferritin level is normal when we need higher levels.
While magnesium helps some - including me - it does nothing for others including my brother.
(Quinine used to be regarded by some as helpful against RLS but the levels in tonic water are minute, and larger levels can be dangerous).
Thank you I just needed some hope that I don’t have to live like this forever and that it will eventually get out of my system or I’ll be able to reverse whatever metformin did to me. Google said it takes only 4 days to leave your system so I was losing hope
I had my own severe problems - RLS and others - after taking atorvastatin for a while, after having a mini-stroke and while being treated for cancer. I got my doctors to change my medication and over a period of weeks got better, from everything including the RLS, and now only get RLS symptoms very occasionally when I binge on the wrong foods. Best wishes, and don't give up hope!
I don't know much about rls but stay far away from kratom. It has helped some people but you really don't want to go there especially with a baby to care for. Maybe stop the birth control for a while and give your body some time to heal. Use condoms for now. Don't add more physically dependent substances. Kratom is an herb so people claim that you become dependent but you do very quickly. Some people can handle it but not most and we are all different. Don't believe the "it's just like coffee" thing that AKA loves to tell people. Once you're hooked it's no better than an opiate. Opium comes from a plant too. Just don't keep piling more stuff on top of more stuff. Unfortunately today we have to be our own Dr.s as the professionals don't know too much especially about medication and withdrawal. Antidepressants are really bad too. Do lots of research and not Google. Lot's of knowledgeable people here but also some bad advice. Choose wisely, baby needs a mama.
Joolsg is an expert here and I'm always grateful for his input. That said, I tagged him because you can replace metformin with over-the-counter berberine for weight loss or blood sugar control with none of the side effects. I'll defer to Joolsg for confirmation on that. Also, can't the 'whole body' rls be the same as augmentation which most of us have gone through when ropinerole (ugh for addictive behaviours) or another Parkinson's drug no longer works. I am lucky to have learned of Dr. Mark Buchfurher on this forum and to find his office near me so I've been on either methadone (fear of opiods) or now oxycodone low dose for over two years. Instead of taking an extra 'half' of oxycodone, I have used kratom successfully to avoid breakthrough rls. Wishing you a return to pre-metformin shortly. I will try the iron recommended too as I have Reynaud's Syndrome and get the purple feet, cold hands too. Reynaud's is aggravated by some meds so look it up if that is an issue. The quinine in tonic is one of those things that aggravates it along with unwelcome purpura or 'purple spots' that look like bruises.
Hi Tiff and welcome to the forum,Metformin can worsen /trigger RLS but as you've just had a baby, it's more likely that you had underlying RLS caused by low brain iron.
Are you on any other meds, including OTC meds like night nurse or cough medicines? There are a lot of trigger meds, including anti depressants and sedating anti histamines and cough medicines.
Many women first experience RLS when pregnant, usually because they're anaemic and the baby takes all our iron stores
So, it's good you've stopped the Metformin for weight loss. Sensible dieting and gentle exercise will achieve the same result without meds and may also relieve RLS.
But the most important thing now is to get full panel, fasting, morning blood tests. Your serum iron needs to be above 60, your serum ferritin above 100, preferably 200. Ask GP for actual numbers as they will say bloods are 'normal' at much lower levels. Keep a copy of the results in case you need a private iron infusion.
Iron infusions dramatically improve RLS in 60%. In the UK, doctors are unaware of the link but there are a few hospitals that realise the benefits.
Where are you?
As you can't sleep, start taking ferrous bisglycinate once a day, last thing at night. But stop taking it 48 hours before the blood test as ferrous bisglycinate can skew the results.
Try taking 3000mg magnesium citrate at night.
Other non med routes are a deep tissue massage gun, magnesium oil massages,leg squats, yoga, stretching and orgasm as it releases dopamine in thr brain.
As you're not sleeping, you could ask your GP for codeine 30mg taken at night. Low dose opioids are very effective for RLS.
In your case, I'm pretty sure your RLS will improve dramatically by raising brain iron levels via an iron infusion.
So get the blood tests asap and in buy ferrous bisglycinate ( gentle iron).
If the GP won't refer you for an IV iron infusion, you can pay privately. The Iron Clinic in London charges around £800.
Do NOT let your GP prescibe dopamine agonists, as they all lead to a severe worsening of RLS.
I understand, but still insist on blood tests. Iron levels can dip dramatically after a pregnancy and that's the number one cause of RLS.Metformin can trigger/worsen RLS, but the severe RLS should settle within 5 to 6 weeks of stopping it. If it doesn't, then low iron is the more probable cause.
Shumbah who also had symptoms from Metformin said things got better after 2 weeks. Metformin can cause symptoms similar to RLS but since you didn't have RLS while pregnant and didn't have RLS before taking it, I doubt you have RLS.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
Do all of these apply to you? If they do, post back here and I can give you some advice.
That is extremely strange because pregnancy is when RLS starts for many unless it has started before or unless it starts many years after being pregnant. I do a lot of research and although metformin can make RLS worse if you have it I haven't ever found anything that says it can cause it. If you still have symptoms after 3 weeks post back here.
Meanwhile for the insomnia, ask for a prescription for zopiclone if you are in the UK or lunesta if you are not.
That’s why I’m struggling. Because no one has “heard of it” happening before. I looked at all symptoms of metformin and under “rare” was severe restless leg syndrome. I was 100% fine and healthy before metformin. I wish I never took it. And I didn’t just have my daughter either she’s almost 1 year old. I’ve been fine until metformin never knew what RLS was before metformin messed me up. I hope it doesn’t take 5+ weeks because it’s so severe that my quality of life sucks. I can’t sleep until 5am every day and I gotta get up at 6am with my daughter
Tiff, I think you have the perfect storm going on right now. If you stopped breastfeeding (which causes a spike in hormones that were being suppressed while breastfeeding) and started Metformin,which is essentially a dopamine antagonist, and also elevates progesterone,and then three days ago you basically started taking hormones, well of course you will have crazy legs if at all pre-disposed to RLS.
I had mild RLS as a young adult and didn’t even know it had a name. I had no RLS during pregnancy. When I started to take a tiny amount of melatonin (increases serotonin and hence antagonizes dopamine) my RLS became the devil incarnate. It was in every part of my body. I would punch into the air. After three days of almost no sleep (I had a young child and work) I read on the internet to just take some iron at night that “there’s just something about that free-floating iron that seems to help.” I bought “Gentle Iron” because of my sensitive gut. It worked that very first night. When I ran out of it and bought ferrous sulfate it didn’t work as well and I fully expected it to. Fast forward a year and I increased the melatonin and I noticed the iron wasn’t doing the trick. I’m a complete nincompoop for not making the connection. Anyways, I doubled the iron and that worked, but I went on the internet anyways and found out that melatonin worsens symptoms of RLS. The day I stopped the melatonin is the day my RLS went silent and I no longer needed the iron. My RLS went really silent. Not even Tagamet would trigger it. The same will happen to you. Your RLS will go silent once all these substances leave your body. You have done nothing but good to your dopamine receptors. No pain, no gain. If it wasn’t so painful I too would take Metformin and HRT. They’re good substances, trust me. Just not right now for you.
Haven’t breast fed. Gave birth a year ago and my hormones are normal And RLS started after taking metformin and I stopped it after the first torture of a night. Started my birth control (which I was on before pregnancy and helps me in numerous ways) 4 days after having RLS caused by metformin. I don’t think I would have this problem at all if it wasn’t for the metformin. My doctor is trying to gaslight me and tell me it must be something else but I know my body and I know that the only difference in what I was doing was the metformin. It could be because some days I would forget to take 1000mg and only take 500mg and I did that a few times. But either way metformin is the reason my whole body feels like this and I’m not sleeping and I don’t have hope that it will ever go away. I’d drink piss right now if someone told me it would make this go away it’s the worst thing I’ve ever experienced and I’m starting to feel weak in the day and everytime I try to rest (sit or lay down) at any part of the day this happens. I can’t be the mother or wife I want to be because of this and I’m losing hope. I felt like metformin should have been out of my system by now and I’m worried it caused permanent nerve damage causing RLS
If you’ve had heavy periods this past year then you might have been on verge of anemia. Metformin is known to cause anemia. So you must be tested. It doesn’t matter if the pill didn’t bother you in the past, you were lucky. You can’t have RLS and take hormones, period. So if I were you, I would take the iron, stop the pill with your doctor’s permission, get your hemoglobin and ferritin tested. If the iron doesn’t provide relief then talk to your doctor about Gabapentin and/or a low dose opiate. I believe Sue and Jools have explained these options to you.
Then what is it? Metformin caused what’s happening to me. No one believes me which is why I’m losing hope I will ever feel relief. I can’t sleep. My legs are restless and now my arms and shoulders are restless. Anytime I lay down or sit down or try to rest at all. It’s torture. I cannot continue to live like this idk how anyone could. If I didn’t have my daughter and my husband I probably wouldn’t be here anymore. I’m tired of hearing that there has to be something else causing it when I know it was the metformin that’s the only thing in my life that changed before this happened.
Just hang in there until the metformin is completely out of your system which should be about 2 - 3 weeks after you stopped it. You can do it. If it is RLS there are treatments. Don't lose hope. In the meantime ask for one of the medicines I suggested for sleep. And try DesertOasis suggestion to take ferrous bisglycinate often known as gentle iron which you can get OTC at a pharmacy a couple of hours before bedtime.
Also be very specific about your blood test you are having on Tuesday. A normal blood test is not what you want. Ask for a full iron panel. If it is RLS improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, 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. Doing this is the first step in treating RLS.
Also as mentioned birth control can make RLS worse so stop that temporarily.
Meanwhile 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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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 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.
For however brief a period you will have RLS and be on here, for now you are one of us. Almost none of us can tolerate any type of additional hormones. There’s no appreciable difference between HRT and birth control. Birdland has said on more than one occasion that HRT ruined her life:
Birdland profile imageBirdland
3 months ago
On a scale of 1 to 10, 10 being worst, my RLS went from a 2 to an 8 after starting HRT. Damn shame because HRT helped me in so many other ways. My mistake was to start throwing meds after the RLS instead of stopping the HRT right away. Lead me down the dopamine agonists rabbit hole.
I bet by now your RLS would be mostly calmed down if you hadn’t started yet another dopamine antagonist -meaning HRT.
It’s the birth control that has the lowest amount of estrogen than other ones. I don’t really have a choice to go off of it. It controls a skin condition I have
If you feel like sharing the skin condition, I guarantee you I will find a less drastic treatment. Birth control has a VERY long half life. It will likely take several days to completely leave your system. If your RLS does not leave by that time, you can go right back on. Always discuss with your doctor.
Ok, no more lecturing. You must make your own way in the world ultimately. Muchas suerte!
I’ve been on this birth control before. For 4 years and never ever had a problem with it. My condition is hidradenitis suppurativa and severe acne. I also use it to not get pregnant. I don’t think it’s the cause of my problem
Yeah, that’s a tough one. I like this in terms of all the topical salves out there:
Povidone-Iodine A topical antimicrobial wash containing povidone-iodine acts against viral pathogens within 30 s and remains active for up to 9 h against bacterial and fungal pathogens on artificial skin [17]. It was evaluated in a prospective, blinded, randomized trial comparing it with benzoyl peroxide 10% wash in 25 participants with HS but results are not available (NCT01818167).
Sounds like it’s not only an outside-in condition, but an inside-out one. It seems that smoking and obesity are commonly found in people with this condition. I personally think those are aggravating factors, not the cause.
If I had to venture a guess after 30 minutes of research I would say there’s a genetic factor (you’re missing an enzyme or inhibitor) that makes you susceptible to fungal infections. Antibiotics, steroids, and birth control are the worst substances for fungal infections, even though they might make you feel better briefly. Actually, birth control is a good test. If birth control helps, rather than hurts your condition (antibiotics should hurt as well), then I doubt in your case it’s fungal in nature. Here’s some more info: m.youtube.com/watch?v=FmnBH...
Intestinal fungal infections/gut dysbiosis will usually have other symptoms besides skin related ones ie digestive problems and big time fatigue. However, getting your gut in order is always a good idea, whatever the condition.
We all have some Candida in our guts- in its single cell yeast form. It’s another animal in our personal zoo. If you give it an inch, however, it will take a mile and become a fungal infection. Fungal infections are usually what takes out AIDS patients.
Fungus, mold, even mushrooms, anywhere and everywhere in our world, are so aggressive, it’s like using guns to fight nuclear weapons I feel sometimes. With that said, Mother Nature likes balance, and usually makes provision for such. Thus, the vast majority of people have immune systems and a gut microbiome that can keep the yeast in check, but like with RLS, there’s some of us that aren’t that lucky. Oh, but when that immune system is compromised by disease, or you wipe out the good bacteria in your gut, via antibiotics, you are giving that yeast/fungus an inch and then you have to beat it back with strict diets and anti-fungals. The problem is it’s hard to recognize, diagnose and test for when it’s intestinal, unlike say Thrush or a vaginal yeast infection, which are more recognizable.
No matter what, if there’s any type of auto-immune connection, then it should have gone into remission during pregnancy and while breast-feeding and then sprung back to a fire breathing dragon thereafter.
Yes! RLS *is* treatable but currently there is no cure.
But you need to see the right doctor ! Either a pulmonologist or a sleep specialist can treat it effectively. In Jacksonville Florida you can go to Mayo’s sleep clinic which is world class. This is my clinic and I wholeheartedly recommend it.
I must emphasize @Joolsg comment about Ropinirole. Please don’t take it! It belongs to a class of drugs called dopamine agonists. Pramipexole is another one you should avoid at all costs. I was on both and they worsened my RLS .. probably permanently ! They are no longer front line agents !!
Finally, I’m on a weight loss drug called Mounjaro which is similar to Metformin in some ways and my RLS has gotten worse presumably because it has dropped my sugar levels which in turn has made me fatigued. This drowsiness has aggravated my RLS but fortunately for me my RLS medication still controls it.
Hi Niko. Mounjaro, like Ozempic and like Metformin, tend to block the release of dopamine. Great for treating RLS, in a very painful way. While you’re taking the drug it will make your legs go wild, but once you stop, after being on it for awhile, your genetically lousy dopamine receptors should be up-regulated and maybe you can even lower your RLS meds? Once you’re off it, of course, your up-regulated receptors will start the slow crawl back to baseline, which is pretty lousy. Nothing good lasts forever.
Thank you ! Unfortunately, I plan on being on it for a while until I hit my target weight ! I’ve been racking my brains trying to figure out why the RLS has gotten worse!
As a side issue and you probably dont feel like trying anything much at the moment. I am presuming you have polysystic overys hence the metformin prescription for weight loss. i have taken metformin in the past re this and it has never agreed with me.I now take something called inosital as a supplement for PCOS. It is a naturally occurring sugar in the body and does not seem to have any ill effects. it has helped me lose weight. Something to try perhaps once this horrible crisis is over.
Metformin is perhaps inducing an "iron issue" causing the RLS. Good advice above to increase iron supplementation after blood testing raising Ferritin level...
"Can metformin cause anemia?
Yes. Anemia is a side effect of metformin. The medication can interfere with the absorption of vitamin B12, a vitamin you need to maintain healthy blood cells. Low vitamin B12 levels can lead to anemia and iron deficiency.
Your blood work should be monitored by your healthcare provider to make sure that you’re not seeing a significant drop in vitamin B12. If this happens, taking a vitamin B12 supplement may help. If you and your healthcare provider decide it’s necessary, stopping metformin should bring your vitamin B12 levels back to normal."
My doctor put me on metformin for type 2 diabetes a few months ago. It exacerbated my RLS which rarely flares up anymore - I take gentle iron, Gabapentin, and trazodone. He switched me over to Ozempic and so far so good. The RLS went away within 3-4 days.
I have had RLS since I was in my teens. I’m 71 now. Pregnancy made it horrible. Several of the meds from the do not take list make it worse. I’ve been through several treatments including the ropinolol nightmare. I hope you can find relief.
This is the best and most knowledgeable group I have ever found about RLS. They are extremely helpful and my go to when I have issues.
Yes, I take it at night spaced at least 2 hours from my Gabapentin. It worked fairly quickly. I was getting over augmentation from roprinolol at the same time so was also taking tramadol to get me over the hump.
If you have some Ascorbic Acid/Vitamin C/an orange or grapefruit you should take it with the iron. If the iron has to compete with the hormones you’re taking there’s a question mark as to how effective it will be
Tiffkirsten - I know you’re exhausted so will keep this short. I have been going through a similar situation worrying that Gabapentin has damaged my ears (a very rare side effect thankfully, unless you’re one that it hits). Was truly freaking out. Slept 2-3 hrs a night, max, due to ear ringing. Anyway, what I want to encourage you to try is acupuncture. I’ve gone a bunch of times the last few weeks and it’s calming my nervous system.
You are young and you will get through this but I know it’s hard. The metformin will work its way out of your system.
I’m sorry your doc is gaslighting you. I’m in Florida too and get it. Hang in there.
Test for your copper level including ceruloplasmin. If your ceruloplasmin is in the teens (ideally near 30), you're lacking in bioavailable copper that'll cause copper-iron metabolism problems, including anemia with bound unavailable toxic iron. Excess iron is toxic and inflammatory. I believe you that Metformin probably caused the problem. Metformin will chelate copper, and this is why it can be useful to treat persistent cancer by preventing Epithelial-to-Mesenchymal Transition targetting Cu, but it will cause copper deficiency over time. Once your blood test confirms that you're low in ceruloplasmin, take copper in the a.m 1:8 ratio with zinc in the evening (ex/ 2-3mg copper in the morning, 16-24mg zinc in the evening), and take raw cold-pressed cod liver oil for preformed natural retinol necessary to build ceruloplasmin.
I’ve getting overwhelmed by all of this. I know metformin is the one and only cause for what’s happening to my body. It’s not only in my legs anymore it’s in my arms and shoulders. I am so desperate to sleep right now it’s like the 10th night without sleep and I’m starting to think that I permanently damaged my body from the metformin. Whether it be nerve damage or RLS I tried so many things and I’m not getting any relief. I’m starting to lose hope that I’ll ever be able to rest again. I’m scared that I’ll never feel normal again. I feel like I took sleep and being comfortable for granted and that metformin completely fucked up my life. I cannot live like this. I have a high pain tolerance and I can’t deal with this. All of you saying you’ve dealt with this for years I literally do not know how because I get an hour of sleep every night and I can’t live my life during the day or be a good mom. I’m literally suffering and losing hope. I don’t want to try to pick apart other medications I’m taking because they aren’t the problem. Metformin caused all of this and no one believes me because no matter how much I researched I can’t find any other cases. I feel like I’m listening to my doctors who are telling me it’s “just my anxiety” and downplaying what I’m going through. All I wanted to know is if the damage from metformin is reversible and if I will ever feel normal again and when, or should I lose hope of a good quality of life ever again. I wish I could go back to 2 weeks ago and never take metformin because I used to sleep so good. I can’t reverse time and I have so much regret
It’s great that you worked out what was causing it so soon Tiff. Just hang in there. The metformin is leaving your system slowly but surely.
Don’t worry about unpicking your other medications etc right now. You’re too exhausted. Get ready for your blood test tomorrow. What time is it? Is it a fasting blood test? Sorry I can’t remember.
Please heed this advice: Stop the magnesium glycinate. Use any other form of magnesium: citrate, malate, taurate are all fine. I use Dr. Carlolyn Dean’s purified magnesium product called ReMag.
I have helped dozens, and perhaps hundreds, of people get relief from RLS by following a low oxalate diet (LOD). However, after I found relief by avoiding oxalate in my diet 8 years ago I had to spend several more years figuring out why it was difficult to sustain the relief consistently. Over and again I proved to myself the concept was correct, but there was a missing factor that was mucking things up. Eventually I realized there were two factors which I had yet to discover by myself because they weren’t on all the websites giving advice about LOD’s.
When I happened to change my magnesium supplement from citrate to gylcinate my RLS came roaring back. After going through a process of tedious experimentation I proved to myself over time that the magnesium glycinate was a trigger. This opened a whole world of understanding about why a LOD can provide relief and why the available advice about oxalates was inadequate. Eight years ago all the websites were saying the meat products were essentially free of oxalate and safe to eat. Despite this advice I believed I had noticed that meat based gelatinous soups and stews would trigger my RLS. When I learned that gelatin is high in glycine everything fit together. In the past couple of years I have seen on the medical websites new advice to avoid gelatin because the scientists have noticed that it raises urinary oxalate levels.
The other key factor I had to discover through my physical reactions and online research is that most of the “non-organic” fresh fruits and vegetables in our grocery stores have been sprayed with an oxalic solution because it preserves “freshness and nutrients”. The food industry scientists who support this adulteration of our food with a highly toxic chemical claim that it must be safe because our bodies produce it. What they don’t say is that it is a dangerous waste product of a critical liver function known as the Citric Acid (or Kreb’s) Cycle. They should read the warnings on Bar Keepers Friend, the household cleanser which is pure oxalic acid and is the most effective product for removing iron stains.
Because I was blessed with the insight that I could switch my RLS “on and off” by controlling the oxalate in my diet, I have made it my life’s work to perfect my understanding and to share the information to help others. Over these past years I have been able to convince many to other people to follow LOD protocols and prove that what I have achieved can be replicated by others. Their stories are available on the rls.org discussion board for Non-prescription Medicines, Supplements, Diet. If you read my many posts there you will learn that my further dietary experimentations changed me from being a person with very severe allergies to seasonal pollens and dust mites, to being a person without allergies. The two modifications I had maintain simultaneously in order to not have allergies were avoiding all the standard refined, bleached and deodorized cooking oils made from seeds (soy, corn, canola, etc.) and all forms of fluoride (in public water supplies, in the pesticides on our foods, and especially in standard non-stick cookware).
Amazingly, by following this extremely difficult protocol for several years I believe I have recovered my ability to tolerate dietary oxalate and not have RLS. Unfortunately I haven’t been able to prove that these remedies will work in other people yet. I am doing everything I can to get the scientific and medical communities to hear my story and do the research. I believe in my heart of hearts that fluoride disrupts liver function and causes a low grade hyperoxaluria (overproduction of oxalic acid) by a disruption of the Citric Acid Cycle and the subsequent mishandling of glycine. Many of the medicines that can trigger RLS or cause augmentation (including Pramipexole and statins) use fluoride as an adjuvant because it enhances the “time release” aspect of the pill. I think when the liver is working to remove the medicine from the body it becomes vulnerable to the toxic effect of fluoride. I don’t know if metformin or birth control pills ever contain fluoride, but I will be looking into it. On the subject of the RBD seed oils I have found research which explains how they are poorly absorbed in the small intestine and this causes inappropriate entry of bile salts into the colon and this causes damage to the colonic mucosa and this causes inappropriate absorption of oxalate from our foods. I hope you find this information useful and I wish you and your baby the all the best.
Update again: iron infusion helped lesson it but it did not make it go away. I got diagnosed with akathisia, not restless legs. Which is severely worse. If you are a Christian, pray for me that it’s not a case that lasts decades and that mine with go away.
The Soviet Union used medication in the war to cause akathisia as a torture method so if that tells you how bad this is…
update: my ferritin level was low. Doctor said it was “normal” but literally the lowest number on the normal scale. The rest of my iron panel was normal.
I’ve been taking iron and things are more bareable right now. Everytime I have a period though I feel like I lose some progress because I have bad nights. I pushed for an iron infusion and am hopefully getting it on Monday.
Metformin caused iron deficiency. But I caught it in time before it became anemia. I only took metformin for about a month so hopefully it didn’t do permanent damage and after I get ferritin up I hope my symptoms go away
I told you the iron would help. If low ferritin were truly your problem then the iron you’ve been taking for only a few weeks would have no benefit. If it’s benefiting you it’s because it’s raising your night time “serum iron” not because it has raised your “serum ferritin.” You have to stop the birth control as I mentioned before. I wouldn’t go for an iron infusion, but that’s me. Just keep taking the ferrous bisglycinate on an empty stomach about one hour before bed and you will be fine and in the long run raise your ferritin as well.
I got the iron infusion 4 days ago and feel so much better. So I’m pretty sure it was an iron deficiency causing my problems. I feel pretty much back to normal. They said it would take 7 days for that though
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Duloxetine - restless legs
Gluten and restless leg.
Rhabdomosis and restless legs
Restless Leg Help Needed
Battling restless legs.
