Different symptoms?

[Denisefs]

I'm curious about symptoms experienced with my fellow RLS sufferers. I've read about people with severe pain and people with leg Jerking symtoms. My symptoms are exactly as it sounds. I have restless legs in both knees. They don't hurt but they feel like they need to be on the move. Almost like I need to Crack them, like when people Crack their knuckles. Just wondering what others are experiencing and where are the symptoms?

[Smiler53]

Hi, I get pain with my RLS especially when travelling If I try not to move them it feels like cramp grabbing hold of the whole leg and I have to straighten it out and groan like mad. We went to Cornwall last week and we had stop at the first service station so I could get out and walk and stretch for a bit. Only for this to happen again and again. groaning and yelling all the way down 7 1/2 hours, It was even worse on the way home due to bad traffic, At one point (and I don't blame him a bit) my husband was getting very stressed with me constantly fidgeting, and I mean constantly and groaning out loud. I felt for him, as I was annoying myself as well! Wishing you all the beast.

[johannasuar in reply to Smiler53]

Why didn't you take your meds. When I have to travel longer than 1 hr I take a dose of meds. Why submit yourself to the discomfort?

[Smiler53 in reply to johannasuar]

I had taken them before we left. This is a problem for me on any journey I'm afraid. Such is life!

[beady3]

Hi what Smiler is telling you is just what my legs are like the journey is exactly like mine with all thatmoaning because it hurts ,you want to stab them ,and it's the same in the house up and down in and out of bed drives me mad let alone the poor husband,mind you he is asleep in another bed of course,I would like to say things are going good now I am on the patch and Tramodol ,so good luck to you get yourself sorted x

[Shaft1952]

Mine are like spiders between my toes also my legs jersey from hips, with knees more exaggerated. From time to time my legs get very hot, I then need to get up till they cool down, or hang them out of the bed, disturbing sleep.

Hope this helps shaft1952

[Spudellen]

Denisesf. I have had RLS in my arms and legs that have a mind of their own.. I can't stop the urge to move. Also when I actually do sleep, my legs jerk and it keep waking me up. I think pain usually comes with RLS anyway. I call my RLS "Walkie Legs". I have improved since being on medication though and that is a blessing.

[restlessinlondon]

Some of us are more fortunate. I have RLS in my arms and legs but only get pain when it reaches my fingers - which is not often. It's amazing the range of feelings experienced by the people here!

[Angelaanddanny]

Hi , I don't get any pain at all just have to keep moving them all the time when they are bad. It's generally my legs but very occasionally my arms. They will jerk all on their own ! Sometimes massage works sometimes it irritates them even more .

[Vonnies_girl]

I have learnt to keep stretching - I bet it looks strange, but it really helps. It's night that drives me mad sometimes; being jerked awake as I am drifting off. I find a warm bath and bed help.

[Artsy]

I have RLS in my arms and legs and at times if I don't take my medicine right I have to get up out of bed and pace back and forth throwing my arms around and that feels terrible. I think sometimes I wear myself out doing that. Has anyone ever had RLS start in the arms travel down to the finger tips and jump to the legs to start all over again jumping from toes to arms. I can't stand that it hurts. How can it jump from one place and connect to another does anyone know?

[Nikkibscott]

When my RLS is bad I feel the need to crack my knees, especially my right knee for some reason. When I crack my knees it temporarily relieves the pain, but the pain always comes right back. I used to sleep on on my stomach, however I am no longer able to sleep in that position because I can't stand for my knees to touch the mattress. I have cracked my knees since I was very young. I remember feeling RLS when I was 15 and my mother telling me it was growing pains. I am 43 now and I am trying to wean myself off ropinirole (generic Requip).

[johannasuar]

Hi Denisefs. I have RLS mostly in my legs and sometimes if I don't take my meds on time ( TRAMADOL 50mg) , I also get it in my arms. I have NEVER had any kind of pain, only the incessant desire to move and move and move, which is what I do till my meds kick in. Some people claim pain and other things, however, here on this page the experts that will help when needed, clearly say that REAL RLS does NOT produce pain. If it does it is associated with another problem. Like I said, I have never felt pain of any kind or anywhere. I'm curious to otheranswers.

[Hidden in reply to johannasuar]

Some people DO get pain with their RLS. I do, its a deep aching in my calf, depending which leg is having the RLS at the time. The deep ache is not related to anything else going on. And i have REAL RLS.

[Denisefs in reply to johannasuar]

I posted this question and just now reading the answers. Thanks everyone for your responses. They are both interesting and informative. I'm relating most to johannasuar's reply. I have the same symptoms but have not been acknowledging the restless arms as its only once in a while but now I see a connection.

[Maximus00]

With me it's my feet. I get a severe burning sensation that drives me mad and stops me sleeping. At it's worse my feet jump and jerk around and I can't keep them still for longer than a few seconds and I cry out almost as if in pain. I went to see the doctor who prescribed Amitriptyline which made the symptons 10 times worse and I went for about a month getting no sleep at all because of the symptoms and I was almost suicidal. When I stopped taking Amitriptyline the symptoms eased off quite a bit but still troubled me. The last time i saw the same doctor I got the distinct impresion that he thought I was wasting his time. Three weeks ago I got a fan and put it at the bottom of my bed aimed at my feet and I have it on at night blowing air on my feet. Ever since I've been doing this my feet have been much better and at least I've been able to get a good night's sleep. When I switch the fan off my feet start burning and I have to switch it back on again.

[Mrappleton in reply to Maximus00]

I have been using a couple of fans on my feet now for years, like you say at times my feet are red hot to the touch and feel as if you could fry an egg on them. Best of luck.

[Mrappleton]

My symptoms seem to be in 4 stages, 1 .. restless legs... constant twitching, 2 .. itching... right down the middle of my legs/bones, 3 .. very hot feet... annoying to the point of wanting to cut my feet off, 4 .. cramps ... severe cramp in feet and lower legs. They usually come in stages when I am tired but very rarely I have had all together and as you can imagine this is pure HELL. I sympathise with anyone experiencing any of these symptoms

[Advocatebynature in reply to Mrappleton]

So it's been 4 years did you find meds that work or alternative diagnosis? I'm thinking of fibromyalgia or nerve damage.

[Mrappleton in reply to Advocatebynature]

I am still taking Ropinorole (REQUIP) and I have settled quite well now. I still have times when it gets irritating but I have learnt to grin and bear it. Best of luck and I hope you get sorted soon.

[Sleeplessmom]

Mine is creepy crawly. Like a wave is going from my spine to my toes. Can't stand it. Have to move. Get up and walk. And it's every night and I think I am going insane. 😫😆😜🙄

[cumoneileen]

I have not heard of restless knees? Arms, legs, not severe pain just an urge you cannot control. Jerking movements that only walking and medicine can ease. I have had RLS for 50 years. Hope you get sorted soon.

[Denisefs in reply to cumoneileen]

I have to say my discomfort seems to be in my knee and lately my elbow joints. I hope it never spreads to my entire leg or arm. Hope you find some relief soon.

[drwasss2]

I have the creepy crawly kind of feeling in legs, anywhere from ankles, calfs, thighs and even up into the groin. Sometimes arms. What I discovered works for ms (and many others) is to wear compression stockings. The urge to move is somehow satisfied by the compression. Use to sleep and always if traveling on long trip (car, plane,etc)