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
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Tiffkirsten
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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
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.
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.
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.
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?
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!
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
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.
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
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.
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.
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.
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.
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
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
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 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
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Any one with severe restless legs?
naproxen NSAIDS and restless legs
restless legs
Restless Legs Syndrome
Living with restless legs .
