It's so goddamn severe that at this point, I either have the most severe case of RLS in medical history or it's something else. I rate it 9 on the severity scale. Did every possible test related to RLS (iron, vitamin D, etc) except for for transferrin saturation and serum iron because it wasn't available in the labs in my area. I live in a really rural area and the nearby labs do not offer these tests.
The results themselves are good/within range. The only thing they discovered was a minor/latent deficiency in B12 (reference range is 187-883, mine is 275 and latent deficiency is 300 and below)
I thought it couldn't get any worse but it did. It's the worse it has ever been. I maintain a healthy lifestyle and have made no changes to my diet, yet it got a lot worse very suddenly. The symptoms are extremely severe and are drastically affecting my quality of life. They cannot be suppressed and are 24/7. Severity does not increase or decrease during the night. I have tried all anecdotal advices. Unaffected by leg position, unaffected by masturbation, unaffected by movement, unaffected by painkillers, unaffected by ice baths, compresses, anything. It cannot be stopped or decreased in any way. Movement doesn't relieve it anymore, at all. I still have every other symptom spot on. The urge to move my legs and at this point is insane and movement only relieves it for the moment and also regular walking no longer works. Feels like I have to run a marathon or something.
Symptom details: my symptoms on top of RLS are accompanied by burning/aching/tingling in my legs, loss of sensitivity, spasms/cramping, slight loss of balance, slight weakness in legs, involuntary twitching, sometimes coldness. My legs sometimes twitch real hard on their own and it's not PLMD because it happens while I'm awake, although this symptom is rare to happen. I have no visible problems with my legs. None of the doctors I've been to were able to find anything. It severely interferes with my daily life and there's not a SINGLE second where I don't have RLS. I sleep like 4 hours a day due to this fucking condition and I keep waking up like every one hour or so and my legs are always in severe "pain" and going to bed again is a struggle. What the fuck is wrong with my body?
Physical information: M19, 5'6 (169cm), 65kg. Moderately physically active, not malnourished, don't drink, smoke, do drugs or consume caffeine in any way. I live in a rural area and cannot afford to visit proper medical professional. Not that it would matter because all of them have been utterly useless so far. Doctors here don't even know what restless legs is. Please help. Further info in profile bio.
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I feel your pain .. ive been going thru this for 30 yrs . And im told it only gets worse . I experience everything you’ve said daily myself . I went to get a pedicure . My leg jumped i thought i almost kicked the girl . Amd the rest of the time im twitching and turning . What a disaster . No one can explain this (no doctor) i have severe leg issues to .. i even had an ablation hoping that would help .. u cant touch or squeeze my legs there always in pain my right foot swells and big toe numbness..
if i had to guess i think this has to do with spine and setting off wrong signals to the brain but thats my guess .. i dont sleep im up every 3 hrs ..
i even get this in my arms
The only relief i get at night is to take 4mg tablet of ropinrole .. chew it .. and 15-30 min later take a warm to hot bath for1/2 hr then i can lay down .. has to be in that order tho .
During the day ill take 1/4 pill , chew it and take 1/2 of an adderal so i can work and not fall asleep..
your not alone This wrecks my life tremendously . Hang in there .. if i find the miracle cure I’ll definitely let u know
Vera
Hi, can you tell us whether you take any prescription drugs like antidepressants or growth hormones? Have you ever had any severe injuries ie hurt your back or head injury? Have you had Covid or some other bad infection in recent years? Do you have any other illnesses or symptoms of illness ie chronic diarrhea?
Certain gastrointestinal diseases can prevent proper assimilation of B12 like Crohns and Celiac Disease. Otherwise, the symptoms you mention sound like early Guillain Barre Syndrome or early diabetic neuropathy. I am NOT a doctor. It’s just a guess based on your symptoms, which also sound very neurological. Lastly, the twitching in your legs, sometimes called benign fasculations, can be a sign of over-active thyroid. Any of the conditions I mentioned above can worsen RLS. It truly seems like some other condition is making your RLS worse and not simply a progression of your RLS.
Also, though it’s not really a diagnosis, what you’re experiencing is referred to as paresthesia. Even sounds like somewhat atypical dystonia. Still and all, given your age, my best guess is that you had mild to moderate (and moderate is pretty bad) RLS for many years then an infection such as Covid 19 triggered Guillian Barre Syndrome.
Thank you for the response. No, I haven't taken any antidepressants nor growth hormones and I haven't suffered any severe injuries. I have had really really bad infections/covid recently, maybe around april this year. I've had two extremely severe infections and one thing I've noticed is that it ALWAYS gets worse after an infection. Seems to be a reoccurring thing. April 2020 I got a severe covid infection and my legs fucked up and became restless ever since. I've had severe "pains" for that year and it didn't get better at all. During 2022 it actually started to subside and it became less severe and I progressively had less and less flare-ups. From 24/7 it turned to like 3 days a week then one day a week then one day every two weeks etc. By the end of 2022 RLS wasn't bothering me all that much anymore and I was able to be productive and enjoy life. April/May 2023 I got another severe covid infection. It was fucking awful and I spent a week and a half in bed. My mom took care of me because I don't have anyone else and I was scared. By the end of the infection, RLS came back at full force the same way it did all the way back in 2020. Currently it's still fucking awful and I will have to go through this nightmare all over again. This time it might not get better however and that's what scares me, it might be permanent now. And yes, I agree. It does seem like there's another condition at play here. Every time I talk to someone who claims their RLS is extremely severe, they're always really really old meanwhile I'm only 19 and have it this bad so it surprises them. I know that RLS gets worse over time but I don't think that it's supposed to worsen this quickly. My "worsenings" have always been extremely sudden/random instead of progressing slowly. Then the severity from said worsening just remains with me. Also I just wanted to mention that dopamine releasing activities do not give me any relief at all.
Well it sounds like Long Covid. There’s no reason to think it won’t go away the second time as it did the first. In the meantime I would think about taking b12 and iron. I believe the best form of B12 is Methylcobalmin. And for iron - ferrous bisglycinate is a good form. It’s very complicated but what happens with severe infections is that the body knows it’s under attack and releases a substance called Hepcidin. Hepcidin sequesters iron out of your blood stream and stores it in order to keep it away from the microbes which love and need iron. It’s a bodily defense mechanism. So your ferritin can be normal or even high yet you still need iron. cambridgeindependent.co.uk/...
Gabapentin might also be a good option to make you more comfortable while your body struggles to return to homeostasis.
Thank you for all the advice. I'm currently taking vitamin C 100 mg and one tablet of feroglobin. I also take B12. Should I continue? Is it certain that it will go away on it's own? I'm scared that it could become permanent given how awful it is.
How long have you been taking the supplements? If it were me I wouldn’t stop. I see that Feroglobin only has 17mg of iron. Think about increasing the amount you take. Think about taking three capsules on an empty stomach about an hour before bed. I take 50mg of ferrous bisglycinate that way and my RLS evaporates in one hour for one night. I think your situation is somewhat different and I don’t know that iron will provide immediate relief, but like the woman in that article, you might need to increase your overall iron and B12 levels. At some point it might be worth it to test to see if your numbers are going up.
I’m sure the neurologist will have some good ideas for you and don’t forget to mention about the Covid link. Nap whenever you can!!!
Wait, 3 tablets? Isn't that a bit too much? The label says it's over the recommended dose and considering that my iron is within the norm, I don't think it's safe to consume that much of it.
Restless, you’re young, and I really don’t want to advise you in terms of how much iron to take or not. Here is a recent post of mine to another member. It is long and may or may not be relevant for you.
Hi Pink, CKD is well known to trigger or worsen RLS in persons who are pre-disposed to it. The CKD makes the body think it is under attack by a foreign invader and in response it releases a hormone called Hepcidin in greater quantity than is normal. Hepcidin is our body’s iron gate keeper. It sweeps free-floating iron out of our blood stream and stores it away where the alleged foreigners can’t get at it. Every living thing loves and needs iron. So our bodies, via Hepcidin, are trying to starve out the invaders. Pretty nifty defense mechanism. However, it is so terrible for us with RLS that I’m at a loss for words for people who have both conditions.
A hallmark of RLS, in addition to a lousy dopamine transport system, is low BRAIN iron. Not low ferritin. Everyone’s dopamine receptors need iron to function properly. It is the grease and glue that keeps them chugging along. Since the RLS brain has poor iron stores we rely VERY heavily on that free floating iron in the blood. Mother Nature has seen fit to lower that free floating iron as night approaches (via hepcidin) in everyone. That night time drop doesn’t bother the non-RLS world, but it does us because we don’t have brain iron stores to fall back on.
Pink, I’m a one trick pony. All I know in terms of treating RLS is ferrous bisglycinate. I take two 25mg capsules about an hour before bed on an empty stomach and within that hour my RLS disappears…for one night, so I must repeat every night. Several other people on here have tried this trick and had good luck with it, overall. I’ll post their stories below.
Anyways, I think you should try this trick before you go for an infusion. I think EVERYONE should try this trick before going for an infusion. I just bought a 180 capsule bottle from Amazon for $14. I’ve seen it as cheap as $8.00 for 90 capsules. I hate telling people to spend money on something that might not work, but I recently bought a small matcha green tea Frappuccino from Starbucks and it cost me over $6.
Back to you and CKD. I read that it’s not unusual for people with this condition to develop something called “Anemia of Chronic Disease.” It presents with the person having normal or even high ferritin yet they are anemic. Doctors are rather desperate to find solutions for this comorbid illness because it’s not good for the CKD patient. I recently read that they will take one of two approaches. They will try to lower the Hepcidin via Heparin, a blood thinner. Please double check me on that. Or they’ll go straight for the infusion which bypasses the Hepcidin. It’s a Catch 22 because that infusion will simultaneously raise Hepcidin. Double check me on that as well. Once again, please think about trying my ferrous bisglycinate trick.
You’re back!!! It’s great to read your post!! Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. You’re advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach!!I
***pennygates profile imagepennygatesDicCarlson
3 months ago
That is a question I ask myself. My RLS continues to be subdued by Gentle iron.
Feroglobin is a slow release form of iron and it bypasses the area where it is absorbed. Per Howard LeWine, M.D. an assistant professor of medicine at Harvard Medical School so won't do you any good to raise your ferritin.
Definitely continue the B12. As far as the feroglobin there is no reason to continue it. After you get your ferritin tested if it is not at least 100 we can give you some advice.
Welcome to the forum. You will find lots of help, support and understanding here. But we need to know more before we can help you.
Many young people even young children get RLS. When you see your doctor ask for a full iron panel. You may have to travel to get it since you said the labs in your area don't test for transferrin saturation, but it is the first thing that should be done for RLS. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it.They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
However I am not 100% sure 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.
Thank you for all the info. Additionally, I'm pretty sure I do have RLS. There's also probably another condition that's making it worse. I match everything except for the third one (they don't get worse in the evening but I do have an urge to move my legs) and I can't be sure about 5, maybe there's something causing it like I said. I've arranged a visit with a neurosurgeon/neurologist. He's quite old but hopefully he can help.
Some thoughts: PLMD can happen during the day. Your symptoms " burning/aching/tingling in my legs, loss of sensitivity, spasms/cramping, slight loss of balance, slight weakness in legs, involuntary twitching, sometimes coldness. My legs sometimes twitch real hard on their own" except for the slight loss of balance and slight weakness and loss of sensitivity all describe symptoms of RLS.
I don't think it is Guillian- Barre Syndrome because although your symptoms are consistent with the early symptoms of it, you don't have the later symptoms and they peak 4 weeks after you have it, You can read about it here nhs.uk/conditions/guillain-...
Peripheral neuropathy is a possibility although it shouldn't get worse with infections nor get better with time.
Infections do increase RLS symptoms. One guess is you may have long covid.
I'm pretty doubtful considering it's RLS/only RLS given my age, I don't think it's supposed to be this bad. Definitely not guillian barre as well. Also according to google, it appears that peripheral neuropathy symptoms may go away or at least lessen with time. Sometimes they get better, sometimes not. It says that infections/inflammation can cause peripheral neuropathy to develop/worsen. Is it really possible to be long covid? For two years?
They have the same issue as me due to long covid? Could you link the article? I think I've heard about similar cases but that was a long ago and there was less evidence/research on the topic. I always thought it was covid related but no one believed me.
It was in the Washington Post yesterday so unless you have a subscription you won't be able to read it. But you can go to the study at Nature.com and use the search for Postacute sequelae of COVID-19 at 2 years
I'm fairly sure you don't have RLS as such, but rather some ailment like peripheral neuropathy.
One really good diagnosis for RLS is to take Pramipexol for three days (only 3 days!). . If that doesn't immediately halt symptoms, then it is extremely unlikely to be RLS.
Another recent post on Noors machine links to a very interesting article about periferal neuropathy. See if that relates to your experience.
I hope your neurologist can figure out what is up with you.
Makes sense. I'm worried whether I should get it though, since the side effects seem really severe. Will I be fine if I take it? Also what dosage should I take? It's gonna be quite hard to get my hands on it since it seems to be available in very small amounts in my country.
0.088 is the starting dose. It can be doubled after 3 days if not working at first. I would not go beyond a week. There will be no problems in getting off it at that point.
If it stops your RLS symptoms, then look at Pregabalin or Gabapentin for long term control.
Can I ask if you have IBS or IBD? when I am having a flare up of this it makes my RLS 10 times worse. Also stress also aggravates both things with me. Lately I have been having cramp in the toes and jerks.
Just a couple of thoughts. Myself and two other people I know had Covid very early in 2020- we all have severe breathlessness, one of we three was very fit, in her 30’s and never smoked, etc. So Long covid can be exactly that- whether you have it I can’t say but every test I have had has shown no problems with my lung function. Also, some of your symptoms might indicate a spinal problem- again I don’t know but it may be worth you getting checked for that - if nothing else but to rule it out. Very best of luck- we are all with you. There will be something that works.
Thank you. Did your symptoms go away with time and how long did it take? I will try to consult with a professional asap. Also what would be the best course of treatment for long covid? Or it depends?
Long covid is a lottery and I think the medical profession is still trying to understand why for some people the after effects are so severe and long lasting. For most they reduce or disappear after time - but you must get checked out. I only mention the spinal part you raise, as the symptoms you describe (some of them at least) might be nerve related (I have a vertebrae slightly pressing on the nerves and had no idea my backache was caused by that until I had an MRI- literally seeing a specialist next week. Like you I have severe RLS and took Sue’s advice and switched to Gabapentin- massive improvement) But there are so many possibilities - it’s a case of trying out each treatment until you find the one that works. Same with Covid, if that’s what it is- you will get there, no doubt.
I am on 600mg of Gabapentin, three times a day. Along with paracetamol, in just a couple of months, I have gone from where you are, to a 90 percent reduction in symptoms (started at 300mg, three times daily and gradually increased). All down to Sue's advice I have to say. The pain is not neuropathy, but spinal stenosis at the base of the back - effectively two vertebrae move and put pressure on all the nerves that run through that area. I couldn't tell how much this was effecting me until the RLS was under control, but aside from the pain, it does cause leg problems as you describe. However, it is highly unlikely you have Spinal Stenosis at your age. All I was suggesting is that you take advice as to whether there are other spinal conditions that affect the nerves and cause your leg issues. As ever, it is a case of systematically ruling things out until your medical professional finds the cause. I know its difficult - I am an impatient person, but you will get there.
For what it's worth.... I'm seeing Dr. Andy Berkowski to manage my augmentation on Neupro. As we discussed my case, he mentioned that, while he has no data to support it, his conviction is that if everyone was treated with an iron infusion upon onset of RLS, it would not progress and could be controlled and/or healed. This would only be possible if the patient had NEVER been on a dopamine agonist. If you haven't been treated with a dopamine agonist (sorry, didn't have the time to read the whole thread) please don't. While it can give the desperately desired relief, sometimes for years, it WILL augment and it causes permanent damage to the dopamine receptors in the brain.
I'm so sorry you are suffering so. Praying for you now.
Thank you. I don't know if iron's gonna be helpful considering that mine is already at normal level. And no, I've never been on a DA. I'm still wondering whether mine is RLS or something else.
I haven’t gotten a chance to read the responses, because I’m getting out the door. I had severed RLS 24/7, mainly because of augmentation. I now take 0.5 mg of Suboxone at 8 am and 0.5 mg of Suboxone at 8 pm and do not have RLS symptoms anymore. I do take 600 mg of Gabapentin in the evening as well, but the moment I took 1 mg of Suboxone, my symptoms were gone within the hour. Might be something to try,
Thank you. Well, mine is not caused by an augmentation. As far as I'm aware, there doesn't seem to be anything that would make it so bad. I don't drink and don't do caffeine. Also I'm still not sure whether it's RLS.
My augmentation was caused by Pramipexole, which was what I was prescribed for the RLS in the first place. It’s a dopamine agonist, which helps RLS at first, but then makes it worse over time, I have been taking it for 15 years and cannot stop taking it now. It looks like I will have to attempt to wean off Pramipexole over several years. If I take less than 0.5 mg of Pramipexole per day, I have severe panic attacks and psychotic episodes. I have to take 1 mg per day to feel normal (meaning no abnormal depression, anxiety, or anger). I don’t recommend starting any dopamine agonist. There is a good chance I’ll need it the rest of my life because of what it has done to me.
I’m not an expert at the science regarding Suboxone, but Mayo Clinic does list Suboxone as a possible treatment for RLS. (0.5 mg to 6 mg per day, if I remember correctly). The good thing about it - whatever dose works for RLS at first always works, so you don’t have to keep increasing your dose. Suboxone also reduces RLS caused by pain killlers and opiates. You would probably know pretty much right way if it works for you. I knew on my first dose. If you don’t have augmentation, Gabapentin is a first-line treatment that works for a lot of people. Also, your iron might be “normal”, but there are specific levels that need to be checked for RLS sufferers that aren’t normally tested.
I wish you the best in finding a solution. I understand first-hand how horrific it is.
Since you are so sensitive to reducing the pramipexole, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
That’s a really good idea. I was reducing by 0.125 per month, but that was too fast. Based on advice here, I was going to stabilize on 1 mg for a few months - then attempt reduction by 0.06 or so (half a 0.125 tablet). But I like the idea of shaving off a bit of the tablet. I have read some case studies of DAWS sufferers that could not get to zero Pramipexole and require a small dose of it for life to avoid depression, etc. I am hoping I am not one of those - that had been my fear.
But at least the Suboxone has taken care of my RLS, which has been such a relief.
It sounds like Akathesia - which is usually related to medications, drugs. See below if you think this could relate to you.
Akathisia is defined as an inability to remain still. It is a neuropsychiatric syndrome that is associated with psychomotor restlessness. The individual with akathisia will generally experience an intense sensation of unease or an inner restlessness that usually involves the lower extremities. This results in a compulsion to move. In most cases the movement is repetitive. The individual may cross, uncross, swing, or shift from one foot to the other. To the observer, this may appear as a persistent fidget.[1][2][3]
Akathisia is a movement disorder that may be associated with the use of antipsychotic medications. The primary movement disorders from antipsychotic agents are akathisia, acute dystonia, pseudoparkinsonism, and tardive dyskinesia. Akathisia may also rarely occur with antidepressant agents.
Akathisia may appear soon after the antipsychotic has been started or may appear when the dosage is increased.
In recent years, akathisia has also been known to be associated with calcium channel blockers, antiemetics, antivertigo drugs, and sedatives used in anesthesia. Akathisia has also been noted to occur following abuse of cocaine. The condition may be acute or chronic, with symptoms often lasting many months or even years.
No it is something that needs to be considered in the differential diagnosis (medical term). It is usually secondary to a medication that the person is on so there is an definite way of fixing it - if recognised. It would be great if it is the reason for restlessdaily's problem.
You really should see either a sleep specialist, pulmonologist or neurologist. These medical specialties handle RLS.
A good specialist will find contributing factors to RLS and deal with them.
Sadly you may need to travel to an urban area to find a specialist. I can suggest a couple of doctors, one in the Chicago and another in the Jacksonville Fl area where I moved.
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