I'm seeking some advice. I have had these odd symptoms for over a year now and my neurologist has said it sounds like RLS. However I have doubts as I've looked at the criteria and don't seem to fulfill all of it.
I have pins and needle/legs in my feet, hand and legs all day everyday. It started around a viral infection in early 2019. The pins and needles do go away when I get up and walk. However I can sit still with them for as long as I want, it's just freaking annoying. In the exact same way as when if your foot falls asleep you can leave it asleep but it feels good to get rid of the feeling. It is not worse at night by anymeans. It is as bad in the morning when I'm sitting and eating breakfast as it is at night when I'm falling asleep. I'd say it is at its worse when I am sitting in an upright position.
I also get these weird shooting pins and needles which travel down my legs and sometimes fill up my entire body.
I had a nerve conduction done and a emg which are fine but understand that they cannot detect small fibre neuropathy. From what I understand neuropathy shouldn't go away when you get up and walk around? But then from RLS I don't think you're supposed to have it every single second of your life that you are ever awake.
I also went to see a sleep specialist who confirmed that RLS is not a constant sensation. It will come in waves and attacks and can end up being constant every night and into the day but still he's not aware of anyone who has it every second of the day when they are at rest.
Can anyone help confirm if my experience is consistent with theirs? Thanks 😅😅
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I'm looking forward to people who reply but I was wondering if it could sound like a compressed nerve when I'm sitting and relaxing which gets released a but when I stand up and walk around?
Hi there, yes it does sound more like a compressed nerve than RLS that you are experiencing .
My RLS symptoms are sensations of crawling, electrical shock waves or pulling deep inside in legs and knees. Often it creeps into my arms and back too. The sensations make my body jump and twitch. The sensations come every few seconds and can last any where between a few minutes or up-to several hours. They start whenever I rest so usually on an evening and often right through the night.
I hope you are able to get a diagnosis and the correct treatment for your issues. It’s no fun suffering.
Please come back and let us know how you get on. Hopefully you will see improvement once you know what your dealing with.
I get electrical shock waves in my legs. I'm not sure of this would be neuropathy or RLS? It hurts when it happens. It's a really sharp wave of pain... But I thought that was more a symptom of neuropathy?
Yes, I get what I would describe as electric shock sensations anytime when at rest, day or night, but mostly evening and during the night. It feels like a sudden jolt running through parts of my body. The “shock” itself doesn’t really give me pain, what hurts is how my joints get “jerked” rapidly and that in itself causes me pain.
Please understand, these sensations aren’t there constantly, they can and often do ease if I get up and move about but they will return once I rest again when I am having a RLS episode.
Hi again and thank you for clarifying. I think from your description I likely have RLS as I too get these electric waves, it sort of feels like burning pins and needles, running through my legs and feet, through my legs at rest. This is along with the pins and needles. These symtoms are all day and during night. My sensations too are not really there when I move around, I can still feel some of the pins and needles but not as bad. They will return the moment I sit down. It's instant.
Are there medications for RLS which I can have the doctor provide?
You must have a look at the Topics section on the right hand side of the page you Post on. You will see a section on RLS meds. I have been prescribed Pramipexole, Ropinerole, Zydol (Tramadol), Clonazepam over the years. All work in different ways with varying effectiveness. What you can take depends on what Country you are in too. Please have a look at the RLS meds section as there is a huge amount of valuable advice from people much more knowledgeable than I am.
Please don’t self diagnose though, have a look at the criteria for RLS and if your doctor is not particularly knowledgeable in this area, they may find this information useful, I know my doctor said she knew very little about RLS and appreciated my research. But try not to lead your doctor to a diagnosis, let them do the work, it’s their job.
I think we might be describing the electric shots a bit differently and that would be my fault. It doesn't feel like something is an electric shock in me. I imagine if you got electric shocks you'd have to flinch immediately. I don't really move. It feels more like my nerves are lighting up in a fireworks and then the wave of pain moves through the feet or body.
That’s exactly the sensation, a shock that’s makes you flinch. I don’t think your symptoms imply RLS, in my honest opinion, but I am not a doctor. It does sound more like Peripheral Neuropathy to me, with it mainly affecting your hands and feet.
I think your use "pins and needles" is raising flags for some us "older, experienced " members. one of the main issues with RLS is that everyone describes it differently. In my humble opinion, it does sound like RLS, if you remove the phrase "pins and needles". I think we are ALL confused now. But, I DO know your doctor is horrid with his attitude, and knows nothing about RLS. But, it could ALSO be the way you are describing it.
Oh and I get the exact same electrical wave feelings that I feel in my legs and feet in my fingers. I mainly notice this at night when I'm trying to sleep. It's like the nerves are lighting up like fireworks. I'd say its worse in my fingers
Oh I noticed you said in your original Post that you “can sit still as long as you want with the pins and needles in your feet and that it’s mainly annoying”, well if it were RLS you would really not be able to sit and put up with it. The sensations “force” you to move, it is impossible to sit still and put up with it, and it’s nearly always worse at night, which is why RLS sufferers are usually on this site at night. What fun!
Yeah. The main thing is, the irresistible impulse to move. You absolutely can't stay still. It sometimes happens during the day, but always worse at night and when resting for longer periods like watching TV or long car rides.
Hi, just to confirm that your symptoms do not fit the diagnostic criteria for RLS.
The principal and defining symptom of RLS is the urge to move, which you don't mention. NOTE, the urge to move is not the same as moving to relieve discomfort.
Secondly, RLS is a circadian disorder i.e. it varies over a 24 hour cycle and this depends on dopamine level cycles. Dopamine levels are at their lowest at night (like several other neurotransmitters). Since RLS is associated with a dysfunction of dopamine, its symptoms are worse when dopamine levels are low.
So. NO, RLS is not constant all day long
Thirdly, the quality of the sensations you describe do not sound like the symptoms of RLS.
You are correct in thinking they sound like some form of neuropathy.
They do jot sound like small fibre neuropathy.
The compression of nerves in the spine can cause neuropathic symptoms e.g. pins and needled, numbness, stabbing pains, electric shocks, buzzing etc. However tge symptoms are usually localised according to the level of the spine at which the compression is occuring. It is unlikely that spinal compression can affect your whole body, the compression would have to be occurring at many levels.
Although it being worse when sitting up than when lying down does suggest a spinal issue is at least part of it.
A spinal MRI would help confirm. or eliminate mechanical spinal problems.
An (biochemical) electrolyte imbalance can cause nervous system.issued, but in that case you would probably have other symptoms such as muscle weakness, altered heart rate etc.
If all normal "nerve" tests are negative, it's difficult for a doctor to come up with a diagnosis. They don't do "vague". They diagnose according to algorithms, flow charts, that depend on test results. I believe with neurologists, if they struggle to make an "informed" diagnosis, it's popular to say it's RLS.
Another"vague" neurogenic disorder which produces no routine test results which you might explore is FND.
I did recently post a link to a good website about this. If I can find it again, I'll post it to you
Thanks Manerva, I am going to ask for a spinal MRI.
I'm now a little bit confused as crazyladylegs says she will get it any time during the day, whenever at rest, but your note says it's not a constant day time thing?
Some people do get symptoms during the day. This is generally unusual. However, even if people get symptoms during the day, they are WORSE at night. So - - - NOT constant.
However, in addition, one of the first line medical treatments for RLS are a group of drugs known as dopamine agonists. These drugs are known to be very effective for relieving RLS symptoms, BUT, in the long term they commonly cause a condition known as "augmentation". In this case symptoms get significantly worse and can happen during the day, not just at night.
It's very common for people to be started on these drugs without being warned of this and when augmentation occurs they don't realise what it is.
If anyone says they have symptoms during the day and they also say they're taking a dopamine agonist, then it's highly likely they're suffering augmentation. Not JUST RLS.
Don't let this confuse you, RLS is worse at night and the main symptom is the urge to move.
I have both RLS and neuropathy (spinal compression), the symptoms are distinctly different. Your symptoms are not RLS.
As crazyladylegs says it's not a good idea to self diagnose, nor to ask a doctor to prescribe an RLS medication if it's dubious you have RLS.
These drugs are very potent dependency producing, with some potentially nasty side effects. It may be necessary for someone like me to take one, but it's not ideal. Unless you really do have RLS and you know they're going to work, it's not a good idea to even be considering it.
I'm getting a lot of different advice from everywhere. My doctor, has now said it's possible to get symptoms all day long if it's RLS. Last night I couldn't sleep at all because all the anxiety is now getting to me.
I've had two replies on this site;, one person said they get symptoms all day, the other said that's not normal RLS.
Hi there, i think what you need to think of is that urge to move , that is the important part of the criteria, forget the getting RLS in the day or not, getting up to have to pace at night because the sensations and the urge stop you from sleeping. From what i have seen you say, you dont have RLS.
I would say I have awful sensations in my legs 24/7 when at rest, including buzzing and the stabbing pain. I get really upset that they keep me awake and sometimes will get out of bed and move to another room to try to calm down. Once I am calm I go to sleep with the sensations in my leg.
I don't have a clear answer. All the nerve tests came back normal. It's 10am here and the feelings in my legs are as bad as they were at midnight last night.
I really hate it. I'm sorry that I keep explaining myself over and over.
I know is hard to explain and find an answer for you. But i am going to refer back to the criteria for RLS, You have to have all of them to be diagnosed as having RLS, again with the urge to move a urge you cant resist, you HAVE to move your leg/legs as the important part to be diagnosed. Everyone will describe their sensations differently, i dont have stabbing pain or electric shock type of sensations, i get a deep ache in my calves and not everyone has pain with their RLS. I cant sleep with my sensations as i have that urge to move which stops me sleeping and i have to get out of bed and pace. we are called the Nightwalkers.
Do you or anyone have benign fasculations syndrome? I have little twitches I've my legs and feet and all over. I'm wondering if that can cause the sensation of pins and needles and crawling/itching over skin? This could cause discomfort without needing to pace around.
I feel like the doctors have just given up; this is fair if they can't help me. It however, also makes me consider giving up.
I dont have them, but i know that people can have them, on other RLS groups i belong to , people actually post video's of the twitches, looks like muscles movement under the skin. I would have to google it to see what sensations they cause.
Please if you are feeling like that then phone a help line and talk to some one Go back up your doctor and explain how you are feeling that you need his help into find out exactly what is going on. My RLS had woke me up so I came browsing and have seen your comment. I do feel for you and wish any of us had an answer for you. Sending hugs
Please explain to your doctor how this is making you feel, sometimes they don't understand how bad you feel. You are a person and not just a list of symptoms! Contact a help line, someone to support you. Make them persist, they will find something to make your life more tolerable. Stay strong.
Thankyou. Today I tried to drive my car into the tree. I didn't even realize that I was doing it or was capable of doing such a thing but clearly I am. I stopped but I think I could have kept driving no problem. I'm in a bad place and I'll go back to the doctor
So sorry, phone a help line right now - if you are in the UK, that would be the Samaritans. You need to talk to someone. I hope you find the help you need.
IF you are having those little muscle twitches, then they need to look at muscular diseases, not neurological (like RLS). RLS has nothing to do with muscles. ONE way to see if you MIGHT have RLS would be for your doc to put you on a dopamine med to see if it helps. They cannot just give up on you. Don't LET them! xx
Many doctors are ignorant about RLS. They actually hurt their patients. Id look on RLS.org City by City for a qualified doctor. There are so many neurologists and other sleep specialist that shouldn't be treating RLS. Also Facebook has several groups. The best is restless legs (Willis Echbaum disease). They have files you can print and bring to your doctor. You should read them first so you can actively participate in discussing your treatment.
We dont know if the poster has RLS, so no point in joining any other RLS group, if it has not been officially diagnosed. Also not sure which country they live in.
I think it's very important for her or him to join that Facebook group because it has literature that's universally accepted throughout the world on how to treat restless legs as well as how to diagnose from Johns Hopkins University and doctor early. People from the UK belong to that group as well I believe and that literature is backed by the RLS foundation which is not free so the only way to get the information is to join and some people can't afford to do that. So the purpose of the group is to be able to educate the patients on diagnosis prognosis and treatment to print those articles letters and other documents out so that they can bring them to their doctors and hopefully the doctors are willing to educate themselves. So I respectfully disagree. People are welcome to join the group to learn whether or not they do have RLS or to educate themselves so that they're able to bring that information to their doctor and help their doctor.
Ok. I think people should know the groups exist. No? I don't see papers I can print on this forum. And there are so many answers that are given that conflict. The science is the science and can be obtained with easily. If you don't like the group, you can leave it. That's all. Is it against the group's rules to refer to different forums and groups to get more information?
As you are new on here, you need to take the time to see what information we do give out to members. They know FB groups exist for RLS, and i belong to several myself. So they know they have a choice IF they want to join a different RLS group. As i said some members dont want to be on FB, their choice. We dont live in the dark ages on here you know, we have many experienced and knowledgeable members on here. We use Dr Early's video's and his website and his info we use Dr B's info etc... Seeeee we are quite grown up on here. !
I don't have Facebook as I was encountering harrassment from an ex partner. I as a result really appreciate this forum so I can get help without having to sign up for a Facebook account
I must say though that there are so many answers given in conflict. I understand everyone is trying to help and the conflict may just come from the difficulty in describing this condition
Hi, i know its been difficult for you. and yes you have had a few conflicting comments to what you are suffering with. I HOPE you have made a appointment to see you doctor, as you had us worried by your state of mind. Someone mentioned have you had shingles? as you mentioned you had a viral infection then these sensations started, do you know what sort of viral infection you did have.?
You are FINE here. FB groups, I KNOW because I run a few, can be absolutely nuts if you get into the WRONG one. This forum is owned by the RLS-UK Foundation. There is all kinds of accurate info on here, trust me. Go to their web site, or the US RLS Foundation. Have you said if you are in the US or UK??? Different countries, different doses for meds, etc.
Yes I'm in USA. I've gotten thrown it of one of those groups TWICE! LOL. that's why I named a particular group. I can't find anything on here. Although some knowledge people have answered me.
Ok. I'm not trying to be snarky. Not everyone knows about groups. My sister-in-law has cancer. I told her about a Facebook group and she's quite the Facebook person. She had no idea. She joined and was grateful. If people don't want to join, they don't have to. If it's against the rules I won't mention it again. But it's just another tool to put in the pocket. A lot of people here are not clear on RLS and even weather they have it. So I'm not sure if your saying it's against the rules or if it's just your opinion.
Its not against the rules as i said the FB groups have been discussed before on here, and the RLS-UK.org who 's forum this is has its own FB page. I belong to several as do a few more on here, its not a secret that some of us belong to not just this forum but to FB RLS groups. Sometimes people have a problem trying to describe their sensations, we try to help them to figure that out. We have had members come on here to say their doctor has said its RLS, and they are not sure they have it, we help them with that. Posting the Criteria for RLS which we do alot gives them info on whether what they are trying to describe relates to the criteria. We have had members who have had a sleep study and they get told they have RLS when in fact its PLMD . No one is saying members cant join a FB RLS group, what i was saying they can get all the info about RLS on here, you were saying that members should join your group for better info. All done.
EVERY group has conflictions when it comes to RLS, and that includes the group you are in. I know ALL the FB groups. Some are good, some are great and some are useless.
3/4's of the people here ARE on FB and in some of my groups and others I know. Besides, Confused is not on FB. But, that one group you are talking about is not the ONLY groups with "universally accepted" information, TRUST ME.
Well mine are scientific information ONLY, and SUPPORT. Some of the groups are totally off the wall, it depends on WHO the admin team is. Your two FB groups, what do THEY say about your question on methadone?
They provide scientific information but they don't throw you out for putting a smiley face in your post. Mostly from doctor B and John's Hopkins. They did say generally speaking, you don't build a tolerance to methadone when being treated for RLS. They said doctor Early specifically told them that. But there aren't a lot of people on opioids for RLS. So I reached out to all of my tool boxes, if you will.
Can you please continue this discussion about FB and other groups, via private message as it is not of real interest to the majority in this community. Our forum rules state that:
If you wish to discuss a concern with a specific person, please message them privately and not in a public capacity. To send a message, click on the person’s icon image or their name and it will bring up their profile. Click on ‘send me a message’.
Yes. This does not sound like RLS at all. RLS isn't annoying, it's torture. And the only way to stop it is to move. Preferably walk around. And the relief is temporary. And when it's happening, the urge to move is irresistible. You must move it. I couldn't hold still if my life depended on it.
Well , there are different levels of RLS. I agree MOST people say it is torture, and I agree. But, there are mild cases of RLS that have not progressed YET that are described just as "irritating".
True but you do have to fit into the 5 diagnostic criterion. It doesn't sound like she does. She should be happy about that.
These five essential features must be present for a correct diagnosis of restless legs syndrome (RLS):
You have a strong urge to move your legs (sometimes arms and trunk), usually accompanied or caused by uncomfortable and unpleasant sensations in the legs.Your symptoms begin or become worse when you are resting or inactive, such as when lying down or sitting.Your symptoms get better when you move, such as when you walk or stretch, at least as long as the activity continues.Your symptoms are worse in the evening or night than during the day, or only occur in the evening or nighttime hours.Your symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis. RLS often causes difficulty in falling or staying asleep, one of the chief complaints of the disease. Many people who have RLS also have periodic limb movements (PLMs) - jerking of the arms or legs that is often associated with sleep disruption. RLS.Org
Does this mean in your experience you are pretty symtoms free during the day? Are people WITH RLS able to feel normal and sit down at some point during the day without pins and needles and fasculations? If that is the case then I can probably rule out rls
honestly yes most people do not have RLS during the day and if it's in their arms and other limbs it usually means you've augmented on dopamine agonist medications like ropinirole and mirapex or levodopa which is a dopamine medication that causes augmentation faster than any other drug. augmentation means that the drug works perfectly for a. Of time but then at some point the symptoms come back and the doctors that don't know what they're doing increase the dosage and continue to increase dosages meanwhile your symptoms are exponentially getting worse to the point where the medication really doesn't work anymore and your entire body is engulfed in RLS. But I don't think anybody would describe it as pins and needles. That's how I would describe lack of circulation like when I sit on my legs too long or when I kneel on my feet too long. I have had RLS symptoms driving in the car for long periods of time such as 2 hours even if it is during the day. I've also suffered taking naps every once in awhile in the afternoon and I could never watch TV. whenever I sat down I had to sit a certain way in order to prevent the symptoms from happening right away. If someone touched my legs it would exacerbate the symptoms.
Yes. Generally if I'm sitting for a long period of time, it will come. If I been my knees up towards my chest, it helps me. It is much worse in the evening. It will always happen at night unless I'm medicated
My symptoms appear every time I sit too, which is the second person who has confirmed that it will come any time they are sitting regardless of the day.
This might indicate that it is RLS that I too am feeling?
It might. But it really sounds like you need a doctor. It's very difficult to describe this condition. But in my opinion, sounds more like a spinal cord compression type neurological problem.
One of the things your doctor should do right if the bat is an iron panel:
There are 4 iron tests for determining a patient's iron status. These are: serum iron, per cent iron saturation, TIBC and serum ferritin.
For RLS patients, serum iron should be greater than 60, per cent iron saturation should be greater than 16%, TIBC (Total Iron Binding Capacity) should be less than 400 and serum ferritin should be greater than 100. In fact, the new recommended ferritin number for RLS patients is at least 100.
If you fall short in any *ONE* of these 4 tests you may have an iron shortage severe enough to still be driving your symptoms. This is how RLS patients should have their iron status determined. And with regard to anemia, one can have a severe iron shortage and not be anemic. Aside from serum ferritin these tests are almost never run routinely or associated with RLS by most, if not all doctors. Also, these tests should be done with an *overnight fasting*, since serum iron is affected by food and can give false readings.
For many people with RLS, low iron is the problem and iron therapy, preferably IV intravenous iron is the answer.
(Source: Johns Hopkins University and Medical Center)
It is called RESTLESS Legs Syndrome for that reason. 30 yrs ago when I had no idea what RLS is, and for my first computer, my first internet search was "restless legs".
That is because dopamine levels naturally drop at night time, for anyone, RLS or not. But, with our RLS brains, and the genetic component thrown in there for 70% of all RLSer's, we have a problem with the uptake of dopamine to the brain, via the neuroreceptors, D1 and D3. We transport dopamine thru the spinal fluid to our brains, and then the receptors do not work correctly and block it.
It sounds to me now that you are writing more, that you could have RLS AND something else going on. Pins and needles are NOT RLS, but not being able to sit still, etc DOES sound like RLS. RLS is not fun to get diagnosed with a doctor like yours who is not listening to you. But, you also have to consider there is more than one thing going on here.
YES, I know. The criteria is right here. irlssg.org And, people sometimes have a VERY hard time describing their symptoms, as I have found in the last 30 yrs of researching and managing many RLS groups. I know Dr Earley at the RLS Quality Care Center at Johns Hopkins. I had 3 iron infusions, and it did nothing for my RLS, but it does help about 25% of people. What works for one does not work for all.
So sorry you are going thru this confusion. When you say "pins and needles shooting up your legs", that is about the only thing that sounds like it MIGHT be RLS, as in the word "shooting". RLS does present itself the way you are describing, though, and you have read the criteria. I have not read down thru, kind of in a hurry, BUT, are you on ANY meds of ANY kind for anything else? Prescription or over the counter.........In my experience when a doctor says "It SOUNDS like RLS", then they do not know much. RLS is diagnosed ONLY by our descriptions of our symptoms, as in a clinical diagnosis in the doctor's office. I am SURE others have told you that you either need a new doctor OR you need to go back and discuss this more with him or her. The feeling of pins and needles , as when your "foot falls asleep" is definitely not RLS. But, the way you are talking about how "irritating" it is 24/7, tells me there is something going on, but probably not RLS. You had a nerve conduction test. Are you diabetic?
YUP. I thought years ago, when I had a very physical job, if I changed to a desk job, it would actually help. So I did advertising billing for our local newspaper fr a year, and I had to stop and go back to the home health care. People can really get it any time,anywhere, even though it is labeled a sleep disorder. Ask your doctor if he knows how DOPAMINE works on the RLS brain, or actually doesn't!
My husband came down with H1N1 influenza Nov 2009, the year flu vaccine availability was delayed until mid/late December. During that illness he developed tingling in all his extremities and even his ears, nose, tongue, etc. It was widespread. It eventually just settled in his hands and legs. He was put on Gabapentin and that stopped the tingling sensation. He’s still on it today, and he'll get an increase whenever he catches a cold, etc. (he then ups his dosage frequency short-term.) If he doesn’t take the Gabapentin, as a “test”, the tingling is felt again. I have RLS, and what you have sounds exactly like what my husband has, and what he has is not RLS. Diagnosed as peripheral neuropathy, I think small fibre peripheral neuropathy, as you mentioned, would be more exact. I’ll bring that up with doctor next time he visits him. Nevertheless, treatment would be same. His doctor doesn’t feel it was virus induced, but we do, due to the sudden onset same week he was ill with the flu. Doc feels it’s due to arthritis of spine. Not worth arguing, as treatment would be same.
My nerve conduction tests all came back normal as did the neurological examination. I know they are not infallible but I keep getting turned away from help because nobody can find anything definite
Mine started about a week after a bad virus. I suppose the trouble I'm having is I move my feet because of the tingling. I hate the tingling. I find it difficult to concentrate on anything. I'm so depressed over it. Last night I didn't sleep, I layed in bed all night listening to the tingling in my legs and feet.
The kindness on this site has gone pass any doctors. Thank you for replying, yesterday I arguably could have ended everything and I think we power cam from realising that I could.
What was the virus??? I asked the other day of it as shingles, because that is important, (not to RLS) but SOME of your symptoms could be attributed to that.
I’m no Dr. but that sounds like a circulation issue to me? It doesn’t match my RLS symptoms really , although I am experiencing the pins and needles sensation lately where as I never have before, but it’s only at night , good luck I hope you find answers that sounds horrible!
This is the issue I am getting. Everyone seems to experience completely different things so I can't align my symptoms to anything accurately.
Can people sit and watch TV or go to work and work at a desk with RLS? As if they can't it seems it is a day thing too..
I told my doctor I tried to hurt myself yesterday, they told me don't be so dramatic it's not that bad. But they don't understand that I don't know what's happening.
If I take the RLS medication (mirapex) should it go away if it's RLS and remain if it's neuropathy? It may be the only thing I can do as the doctors are well and truly done with me.
We had another member who we were trying to work out if they had RLS or not. Her doctors were not very helpful to her. So the member tried Mirapex to see if it worked for her, it didnt.. I dont think she still knows yet what is wrong with her. IF you decided to try Mirapex it should be at the lowest dose, which is 0.088mgs (0.125mgs) Those are both the same dosage, just said differently in the UK and the USA.
The LOWEST dose possible. ALWAYS. Trust me on that one. I will not get into exactly why right now. Are you in the US or the UK, before we even discuss dosing.
Oh my, i have just seen this comment from you, and i cant believe thats what your doctor said to you when you saw them. That has mad me really angry on your behalf. Your doctor has NO idea. Even if its not RLS which we all think its not, then your doctor should still have been sympathetic to your situation. What was the conclusion of your visit, ? Is your doctor trying to get to the root of your sensations now. ?
Well all you can do is try the Lyrica and see if it helps, you might not see any improvement at first. it might take a week or two for it to work, IF its going to work for you. All i can say now is very good luck to you, and i hope things get better for you. If it doesnt help then go back and tell your doctor its doing nothing for your sensations.
Gabapentin is what I take for RLS and what my husband takes for his peripheral neuropathy. It’s a safe to take medication. Please ask your doctor to prescribe it and just give it a chance. My husband is prescribed 600 mg 3x a day. He takes it twice a day (though recently started taking once a day) as that is what relieves his symptoms, and he takes the mid-day dose as needed.
I looked Australia up and it looks like your NHS won’t pay for gabapentin if not a seizure diagnosis. I couldn’t find if they’d cover for neuropathy. If they don’t, and you are desperate, try this website and pay out of pocket. I have no opinion to offer, but hopefully it is legit.
Untreated RLS can be a 24 hr thing, even though it is a neurological sleep disorder. I am MORE interested in what you nights are like. IF we could start OVER and you can just describe the nights FIRST.
There is no difference in mt symptom's between day and night.
(1)At night I feel fasculations, pins and needles, a wave of burning through my feet and fingers (painful) and waves of tingles that move through my leg (the best way I can describe that is like a a fireworks in my leg, it starts and then moves down my leg). The tingling and fireworks is worse in my butt but does travel everywhere down my legs.
These sensations bother me but I can lay awake all night from the sensations in my bed. I don't really get up and walk around.
(2)
In the day from the minute I wake to fall asleep I get all over the above sensations (except the feet burning from the wave of tingles only occurs at night). During the day I can also feel my heart beat throbbing through my legs. It is during the day that I move myself around to stop the discomfort.
There is no difference in the severity symptoms at any time of the day or night. It is also constant, the second I sit down the vibrating and pins and needles start.
I would say its discomfort that is moving me. In the same way pins and needles makes you move. You can sit there forever with pins and needles but it's distracting. that is the best way I can describe.
I am in Australia. The doctor has offered only Sifrol o.375 mg ER as I have day time symtoms.
HI. I am shocked at your doctor pushing you off when you told him how you're NOT doing well. My BEST advice is a new doctor , if that is possible! Your question above about taking a med FOR RLS, and if it does not work, then could it be neuropathy? We cannot really answer that, because as you are seeing, what works for one does not work for the other. RLS has a mind of it's own. Taking a med to try it, is one way to see if it helps. BUT, the only rule for RLS is that there are NO rules. But, you have read the diagnositc criteria and you say "No URGE to move". And,. THAT is the ONE rule for RLS. You talk about not being able to sit still, etc etc. We are getting into very confusing territory. it is so hard for some people to describe RLS, and people use all kinds of different ways to describe it. BUT, the official diagnostic criteria is irlssg.org But, I think your biggest immediate problem is your doctor is NOT listening to you. So sorry this is happening. I have been managing groups for 30 years, and I am concerned that we are very confused at your description of symptoms. THIS forum is owned and managed by the RLS-UK Foundation. And, there is always the info from the US RLS Foundation, too.
There are NO tests, except to rule things out, for RLS. The ONLY way to diagnose it is for your doctor to listen to your symptoms, and it is diagnosed off of their knowledge. having said that , I taught my doc everything she knows about RLS, per her words. May I suggest the BEST book to get? Clinical Management of Restless Legs Syndrome, 2nd edition. It is considered the RLS "Bible". every single one of my doctors have a copy from me, so they have NO excuse not to know. They are all trained now. And, I have "fired" several doctors over the years until I found my current ones. Remember they work for you, you keep them in business. The fact that ANY doctor would brush you off and say "Oh it's not that bad!" sickens me.
when i see the posts that some have the it all day i feel quite lucky i don't that often although if i drive for a while it comes on and i have to stop and walk about till it goes off.
the other thing is when i go to the doctors about it they don't know a lot about RLS they say they only have one other patient with the symptoms they just brush me off all they say is take another 5mg and i'll look into it' I take my better half up quite often for other problems and i ask but they know nothing more it sickens me if they got it i bet they would soon look into it they prob can't be bothered and just forget about me when i leave.might be a good idea to dump this RLS Bible on his desk,
where can i get this Cinical Managment of restless Legs Syndrome 2nd edition
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I know Dr Earley at the RLS Quality Care Center at Johns Hopkins. I had 3 iron infusions, and it did nothing for my RLS, but it does help about 25% of people. What works for one does not work for all.
RSL new member of forum.
Hi! New here and pregnant. 
New Member. Annjulia aged 70 
Does this sound like RLS to those experienced?
Hello.
