WHAT IS THIS FEELING?!?! Is it restless leg syndrome or something like that? UGH.

[DWYLI33]

Oh my god so I'm not sure what I'm actually feeling! Idk if its restless limb syndrome or what. Cause sometimes during either the day or night I just get that unbelievable feeling. I just get it all throughout my entire body and it won't stop until I move around, and it gets worse and builds in intensity the longer I try not to move. It doesn't hurt though, it's just SUCH a terrible, annoying, weird feeling that just builds up. I know this won't make sense (it just registers in my mind like this for some reason), but it feels like a, uh, metallic feeling? like if you lick or bite metal? That taste/feeling in your mouth. But that same feeling as if it's running through all my veins. ITS SO WEIRD, I know. And it seems to mainly happen at times when I have to/feel like I have to sit still. Like, when I'm sitting in class or if I'm in bed with someone else and we're going to sleep. It doesn't ALWAYS happen, but sometimes. I really want to know what it is. Because it makes it impossible to fall asleep, no matter how tired I am.

[Pippins2]

Hi,first of all go to RLS-Uk.org and click on about RLS , you will see lots of information there.Click on diagnosis and you will see a symptom checker.Have a read and see if that sounds likewhat you are experiencing. From what you have already told it is highly likely that you have restless leg (limb) syndrome but take a look at the diagnostic criteria first.Come back on here after you have done that and we will take it from there and try and help you , ok ..Pipps

[DWYLI33 in reply to Pippins2]

Thank you so much!!! I'll definitely check it out!

[beady3]

What ever Pippin has told you to do do it then you will get a lot of help of this site ,then you can go to the docs armed with all the news to help you x

[Kaarina Administrator]

Hi DWYLI33

You could not have got better advice from Pipps.

If you are in the UK, there is also a helpline on the rls-uk website which is open Thursday and Monday mornings from 9 - 11 am. Telephone No: 01634 260483. If the line is busy, leave a message and you will get a call back.

Kaarina

[java234 in reply to Kaarina]

Thanks for that number. I am not in the UK but can call the UK if I get desperate and need a number.

[Windwalker]

DWYL133

You have put into words what we all have felt when we were just starting to get RLS. We were baffled as to what was happening to us. I have been a sufferer for 35 to 40 years of my 78 years. In 2002 I was sitting with my friend who is a doctor and ai was explaining why I didn't want to continue living. I had not slept in 8 days and the last sleep I'd had was after drinking a bottle of wine.

My doctor friend had another friend whose doctor had put her on a dopamine agonist called Maripex. My doctor friend gave me a prescription for Maripex. I slept for the first time in 8 days and I have taken some kind of this type of medicine every day. Once in a while for not reason I get the feeling you described and I have to stop it by taking a strong sedative of one thing or another. Just today to get it under control I took a 3mg codine based drug.

If you are young and your post seems to indicate that, you will get by with a smaller dose than I take. You also need to do several things in addition to the medicine. If you are heavy, slim down. Keep your calorie intake low. Exercise vigorously by exercise bicycle, tread mill, eliptical machine and do lift weights and try to stay in good physical condition and you will need a lower strength medicine.

You will also have to change around to find the right medicine when the one you are taking stops working, but do get a good neurologist who specializes in RLS so he will understand what you are going thru. Good Luck.

[DWYLI33 in reply to Windwalker]

Oh wow.... Yeah mine isn't that bad. And it's only sometimes, not everyday or every night. That seems unbearable!!! I'm glad that the medicine can help you though. And yeah I'm young, but I'm already slim and workout at least a couple times a week... So idk... Thank you though!

[Sorcha55]

DWYL133 I have begun to experience it as a whole body feeling. and my night time RLS is requiring more medication. So uncomfortable and frustrating. I have the metallic taste and feeling too, so you are not weird. Or maybe we both are. I put mine down to my Multiple Sclerosis!!

[Cathy12345]

Thanks to Kaarina for the UK helpline phone number. I'll keep a note of it.

Just for general information about the strange feelings which a lot of people seem to get, when I first started getting rls I had times when I just got very itchy legs and I scratched so much that I ended up with scratch marks all over my lower legs and sometimes I scratched so much that I bled. I thought I had a skin condition. Then I read somewhere that this was a mild form of rls so I started taking my medication whenever the itch started and this also prevented the onset of the intense pain that I call my attacks. No more scratched legs

I hope this is helpful to someone.

Best wishes to everyone who follows these posts.

[Donnymmm in reply to Cathy12345]

Very interesting, I didn't know that was a mild form of rls! I wonder what all is being caused by my multi-faceted plague that started with a back injury, then surgery, then... Plague... Any neuropathy issues? Open to all suggestions but looking for vitamin remedy or new medicine besides Gabapentin. Seems like that's the only medicine the VA wants to give, so after 20 years of no consistency or relief I'm close to pursuing a doctorate in living with pain, then different pain... Should have graduated already😁😁

[johannasuar]

Welcome, you describe RLS to a T! It's that we don't know how to describe feeling in our body that needs movement. I don't have pain and according to RLS professionals you shouldn't have it though some people say they do! I got it five yrs ago and now I take medication for it, so I can get relief for sleeping, going on long car trips or long flights or watching a movie. You need to go to a doctor that understands RLS, but be careful with what they want to medicate you with. Here you will learn what and what not to take, and what ever you do, keep away from antihistamine or over the counter meds for coughs or allergies, they will increase THE feeling. RLS usually starts in the late afternoons or evenings, that's why the major problem is the lack of sleep. Ask a lot of questions here, everyone is more than willing to help. No matter how you describe it we all know what you're feeling and some of the people here have even comical names because of this incurable disease , like DANCING LEGS, I find it very funny but it's what we all have. Good luck, you're in for a ride and will have to learn to live with it. A word of caution about some meds, they make you gain lots of weight and also don't be afraid yo change meds till you find one that works for you. I found TRAMADOL, it's an opiate pain killer and many pain killers work for many but not for all. Looking forward to hearing from you again after getting the right medical help.

[nightdancer]

Sounds like RLS to me, the way you are giving such a good description of it. You will only make it worse by trying to stay still. The more you try and suppress it, the more RLS will "fight" with you. You need to see a doctor to get a diagnosis, but it sure sounds like RLS. The part where you say, "it is not pain, but the most unbelievable feeling, etc" is RLS almost for sure. You should see your regular doc and then ask to see a neurologist or a sleep doctor.

[nightdancer]

Also, another good place to read is rlshelp.org Not sure what country you are in, but the doctor that runs this web site is from the US and he is one of the best, and the info is "global" except some of the med names are different. But you can read 19 years worth of emails and questions that people has asked and he has answered. Dr. Mark Buchfuhrer, he is one of the BEST. Lots t read on the treatment page. make sure you are not taking any over the counter meds that could make the RLS worse. That info is also on the treatment page "Drugs to Avoid" section.

[DisneS]

I have been suffering with rls for many years and am on neupro patches (I can't take any of the tablets as they affect my gut) There are a few simple things that I do like having a hot bath or showering my legs with cold water which sometimes make a difference. Also alcohol and caffeine always make things worse. I have also discovered that magnesium spray on my legs gives some comfort although people have said that it doesn't do anything for them. Hope you find some help DWYLI33

[cumoneileen]

sounds like RLS. I get a gurgling sensation in my legs then they start to jump involuntary. Sitting or lying for any amount of time will trigger them off.

only moving around will help and of course tablets.

[bryhen22]

same here , not sure how to describe it . kind of a wave of ickyness ? nails on the chalkboard feeling, in my muscles ? I've been using 200 mg of tramadol sometimes 300 . and it works great , but I need to take it every day , there has to be another way , going to physio tomorrow to see if they can help .

[MBinNC]

Hi! I also stumbled across your post 7 years later after (almost) never having restless legs in my life! I’m 41 years old, overall good health, on zero pharma drugs…but 7 weeks ago I broke my ankle and had to have surgery. This is the worst experience of my life! The recovery feels long and slow, and this atrophy in my thigh and calf muscle on my right leg is what I THINK is causing this annoying sensation you described!

And yes, you described it perfectly. To me, it feels like “waves” of “electrical aches” that start in one area and sweep across to another. Not always the same direction and size though. So weird. And I CANNOT resist the urge to shake them or move or (as someone else mentioned the comments above) press them against something! I pray this is temporary, although my surgery was seven weeks ago and I’m not taking any drugs except Tylenol and tramadol. And I’m guess tramadol doesn’t cause it since people are saying they use it as a treatment?

I hope you found relief!