Where's Your Pain?

[sophia398]

I was just wondering if anyone would be willing to share with me where their specific "sensation" occurs on their legs. For me, I feel it on my thigh, usually under my hip. However, sometimes it shoots down my upper thigh to directly above my knee. Does this happen in the same place for everyone? Do both of your legs get it at the same time (mine do not). Do you get it in only one leg, or does it change (mine changes, but not in any pattern). As I do more and more research, I'm just wondering what others are dealing with.

Thanks for your input!

[GaAudrey]

Hi -
I have pain in both my thighs, but until the last few days never thought about it being related to RLS. The pain is on the outside of each thigh from just below my hip to just above my knee and they don't hurt at the same time. Sometimes one will hurt because I've layed on it to long and sometimes one will hurt because I need to lay on it??? Makes no sense and I thought it might be cyatic nerve pain, but my doctor doesn't think so. It happens almost every night and causes me to toss and turn through the night. That on top of the RLS in my calfs and feet and I've got a real dance going on! Hope this helps with your question.

Audrey

[Barb G]

I find it difficult to pin point the location of the sensations. I find it is usually in the calf area but can also be in my thigh. It's usually one leg, either one, they trade off. But I will also occasionally get it in both.

Just lately I'm having a new pain in my right calf. Today it's been on and off all day. Don't know what the heck that is

[ViewsAskew]

I have wormy, electrical sensations in the top of my quads (never calves or feet, or hamstrings), usually not both legs at one time, often starting with the left quad, then in whichever it chooses. My sister's almost always start with the right! I sometimes have a similar but not quite same sensation in my arms, both upper and lower. It is half crawly, half like it's asleep; I feel like I need to shake them.

The pain I get is not associated with the crawly feelings. I get itchy bee sting type pains from my stomach down, in all body parts. As I type, I just got one in my hip. They only last a second or so normally, but a few times have lasted 30 seconds or more.

Out of the 7 of us in the family who have RLS, we ALL have the sensations in the thighs. . .imagine my surprise when I started reading that it's often in the calves! That just seemed crazy to me .

Ann

[jrowley]

I have more of a numbness rather than pain and it occurs all the way down my legs and into my feet usually when in the sitting position. Then after sleeping I wake to the back of my calfs hurting like I had been running all night.

[nanawal]

Hi, new to this website. I have had RLS if that is what I have for many years. The pain is in both of my calfs. It is like growing pain. It is so bad sometimes that I have to hit them hard or have my husband kick them and squeeze them. Sometimes, a hot bath will help for a few minutes. But the hitting helps more. My husband does not like doing this. Which, I guess it is bad and could cause blood clots. The pain is usually in the lower part of my calf left and right.

[scottlevad]

Thighs – Intense pain when immobile, 100% of episodes.
Calves – Intense pain when immobile, 80% of episodes.
Biceps - Intense pain when immobile, 20% of episodes.
Pectorals - Intense pain when immobile, 20% of episodes.

RLS episodes – 80% of my nights, 30% of my days.

[chopoffmyfeet]

i get it only on the soles of my feet. and now recently with bad attacks i get it on my palms as well. never anywhere else. i wouldn't call it "pain" at first... it is more like a tickling/poking sensation that is so great that i have to move my feet. however, just moving my feet does nothing to alleviate the sensations--only pressure will work. luckily because it is the soles of my feet, all i have to do is stand up for instant relief.

by itself, the "pain" does not bother me at all... it's the fact that it prevents me from sleeping that "hurts".

side note: is it normal as someone with RLS ages for the affected areas to increase? it was always my feet, and just my feet, for the first 20 years of my RLS. now it sometimes also includes my palms. just wondering if i should expect in another 10 years to have the sensations in my calves (or elsewhere) as well.

EDIT: forgot to mention that when i was growing up the attacks would only occur in one foot-- usually my left, but not always. after i turned 18, attacks would most often happen in both feet at the same time, but one would be more intense than the other (again, usually my left). lately the attacks are always in both feet and both feet are affected with the same intensity.

[Penguinrocks]

Do you ever feel like you're being bitten? Migraine today. I think I'd better start writing all this stuff down for the neuro.....

[squirmy]

Even during a bad RLS night, I try to describe the sensations to myself and still have trouble, but I will try. It occurs in both legs, but at the onset, I feel achiness in my right knee. I just get comfortable and on the verge of sleep and wamo, here we go again! For years I only experienced what I thought was just dry, itchy feet, occurring at the onset of sleep, and both feet were affected at the exact same moment. Then when my Lupus desease kicked in, I started experiencing a feeling of fiberglass and wool running through my bloodstream, especially the legs, just as I was about to fall asleep. About every 30-40 seconds there would be stinging like bees and stabbing in the thighs, as if someone had a voodoo doll of me and was pricking it. This would last all night and I found relief by moving and rotating the ankles and tightening and stretching the muscles, so I couldn't get any sleep at all during the night. I fantasized about chopping off my legs so I could sleep...but then I realized I also had the feelings in my arms...I would have pain for a couple days after a nightly episode due to tensing my muscles and pacing for long periods of time. I started Neurontin and after about a week I had less frequent episodes. Then after 3 months, it came back, worse than before, a 20 hour episode, even during the day. I started taking Sinemet instead and for a couple weeks I slept like a rock, it was fantastic, but I didn't really feel rested. With Sinemet, the weird sensations only occur for a few minutes at a time, but I wake around 4:00 a.m., moving my ankles and making snow angels in bed.

[becat]

I'd be hard pressed to tell where the RLS starts and begins, another new phase. The arms and shoulders are in between exhausted and eletric. Alomst that limb falling asleep feeling. It doesn't seem to react much to my medication and it's gone beyond annoying. It starts in the very late afternoon or early evening.
The legs......uuuufffffffaaaaaa go figure. I swear normally controlled with a good medication it is only right sided. Not lately. And it can start in my knee, my thigh, or my foot. I too, roll my ankle, cracking it every 30 minutes or so. If it goes on too long it spreads. With a couple of days it shows up in the left legs and the hips and lower back are sure to follow.
I really like what Squirmy had to say "Even during a bad RLS night, I try to describe the sensations to myself and still have trouble, but I will try."
Having had a GP appt. last week and to add to that a couple of interviews in the last month or so.........I find myself where I started. How do you tell someone about RLS and how it feels to you. It's not easy. It's difficult to explain the finer points or exactly what your body does to you.
I find this fact amazing. After a yr. of being here on the board and talking about RLS, I still become a bit befuddled about how to explain MY symptoms.

[jan3213]

It's Jan
Remember me? I don't post here very much anymore, but I used to post a lot. I know Becat and Ann know who I am. Anyway, I was just reading Becat's post and I know exactly what she means about having trouble describing her RLS symptoms to someone--whether they are victims or not. In fact, she and I spoke on the phone the other day and I was telling her that I hadn't completed my Quality of Life Statement yet. I just can't seem to get my mind around it. I've belonged to this board for almost a year, too. I've come so far. So far, in fact, that I've now been dxed with fibromyalgia. But, I digress. Back to RLS. She and I were discussing the fact that I am getting so frustrated and angry with the attitude of many people toward RLS victims, my own problems with medication (bad reactions; lack of effectiveness)--I've been sick a lot this winter and I'm sure that has a lot to do with my attitude. I was telling her that everytime I read someone's Q of L statement, I cry. I cry because it's me. And, I cry because it's all of you.

I'm reading the posts on this thread and I notice where all of you have your sensations. I CAN tell you that mine started in my thighs, advanced to my legs, now I have the sentations in my arms, the trunk of my body, my hands and feet. I feel for each and every one of you. My sensations are USUALLY controlled with medication. But, sometimes, the medication doesn't help. You all know that, though.

I'm reading my post and thinking it's probably a good thing I don't post much anymore. WHAT A DOWNER! I didn't use to be this way. I was an encourager. I think you just get worn down. Tired. Hopeless. But, I'm going to get that Q of L Statement written, and I hope to go to Orlando this fall to the National Meeting. I know this thread isn't about getting your stories down on paper, but please do. There's a thread with information about what to do and whom to send it to. We ALL need to fight this THING that steals our hope, our happiness, our lives.

I hope this helped, sophia. Becat and Ann, hi! Sara, hi, if you happen to see this! Ruby, same to you! Oh, how I miss Jumpy! Lyn, hi!

I'm glad all of you who posted found this place. It's a wonderful place, as I'm sure you've found out. Even though I don't come here often anymore, it's been such a source of comfort for me and I've made lifelong friends. Wonderful friends. I miss all of you!

Love
Jan

[ViewsAskew]

Jan, glad to hear your voice. I'm so sorry that it doesn't seem that anything is working or getting better yet. I hope that changes soon.

Explaining how this feels is a tough one. I was called last week to discuss my QoL statement I sent to We Move. The woman I was talking to was a PR person that is helping with the campaign to raise awareness of all movement disorders. She asked me to explain it and I was silent for several seconds. I gave it my best shot, but I know it wasn't right. For one thing, it differs somewhat from person to person. What I call an ache someone else may call pain. What I call tingling someone else may call electricity. I always know when my RLS is 'threatening." But I couldn't tell you how. I just feel different. I get an awareness of my legs. And I get anxious. But there isn't anything really tangible to describe.

I've thought about this a lot since that phone call. If I'm called by a reporter from the Chicago Tribune, what am I going to say? How do I put a face on this that others can see? What analogy can I use that will make others nod sagely and say, "Oh, now I understand. How awful."

If anyone has any ideas, send them my way before next week when they start this media blitz and I might have to talk to a reporter .

Ann

[Anonymous]

Mine is in my feet , i have to get up and walk around , when that does not work i have to set down and hit my feet on the floor , sometimes i have to do this most of the night . Also iam on kidney dialysis and it some times hit my when i am on treaments which make it real hard .

[Lovechild]

My pain is in my calves and my feet. The pain feel like charlie horses, but worse and constant. It is the worst pain I have ever felt. Even worse than child birth because it is constant, but thank GOD my meds control it.