Restless Legs Syndrome
9,415 members5,805 posts

What if I don't have RLS after all?

I was thinking about it over the weekend. Maybe the reason none of the RLS meds have given me relief is because I don't really have RLS. Maybe I have something else... like fibromyalgia? Are there other things out there that mimic RLS?

34 Replies
oldestnewest

I guess the first thing to ask is do you have the criteria for RLS. ?

Reply

What is the criteria? My legs don't itch or feel like the skin is crawling. I don't pace the floor. But my legs hurt all the time, a throbbing pain in calves and thighs, especially when I'm sitting at my desk or sitting on the couch or laying in bed. The pain goes away if I move my legs, but comes back as soon as I stop moving. I have to either bounce my legs or repeatedly clench and unclench the muscles or constantly shift positions.

Reply

Click on the link i have posted for you.... :)

Reply

ookla, there is a thing called "positional discomfort" also, that makes your legs ache badly

Reply

Wow, I can finally reply to this after logging in again and answering three riddles.

Anyway, I tried to google "positional discomfort" and got a bunch of result about chest pain. :(

1 like
Reply
Reply

Thanks. It doesn't really elaborate on the symptoms or treatments, though.

Reply

Its a nightmare, trying to get on this site... just when i think i am safe to get on, i have to log in yet again....grrrrrr.

Reply

This place is almost as frustrating as RLS. I wouldn't come here at all anymore if it weren't for the free coffee.

Reply

Hey where's the free coffee, they didnt tell me that when i signed up... LOL.

1 like
Reply

the basics of the criteria is "the urge to move" and you cannot ignore it, not just pain. the word "urge" is used several times in the diagnostic criteria that Elisse sent in. ;)

1 like
Reply

That is not Fibro if movement helps you. I have both RLS and Fibro, and the Fibro pain is way different than the RLS "feeling" which is not always pain, but some describe RLS as feeling like pain, and it is listed as a symptom for RLS now.

Reply
1 like
Reply
1 like
Reply

I definitely have RLS, and none of the RLS meds work for me. It is not that uncommon for us.

Reply

I have fibromyalgia, and about 1/3 of RLSer's do have Fibro ,too. Fibro is pure pain and very different from having that "urge to move" criteria.

Reply

Is "pain that feels better with movement" the same as "urge to move?" I mean, I don't *have* to move my legs... I could sit still and be extremely uncomfortable, but it drives me crazy. But if I move my legs, the pain goes away for a few minutes.

Reply

ookla, did you look at the criteria link... you have to have the urge to move your legs, you have no choice, but move them.. mine jump, dont have a choice, cant keep them from jumping....impossible to keep them from jumping.

Reply

I move my legs when I can't stand the pain anymore and have to move my legs in order to soothe the pain (which comes back after I stop moving). I don't have any involuntary movements... I guess I don't have RLS after all.

Reply

RLS is not involuntary movements. It is the fact that you have to move or you feel like your legs "explode". Pain can be part of RLS. But, when you cannot lay still and you have to keep moving around and getting up to relive that feeling. When you say you have to move your legs when you can't stand it any more, that is RLS. Some people do not have pain with RLS, some do., But, if you have to move to relieve it, then that is the also the "urge to move" thing. See how complicated it is for any of us to describe it adequately who have been diagnosed for years? No wonder you are confused. ;) Have you looked the good RLS sites, and read them for yourself? PLMD is involuntary movements (periodic leg movement disorder), which happn mostly while you are sleeping, and even experts mix those two up. The fact you say say you have to move is what Elisse and I are talking about and the criteria she sent in.

Reply

When I'm in bed and my legs are driving me crazy, I end up squeezing them together around a pillow or clenching and unclenching my leg muscles over and over or wrapping them up tight in the blankets or just scissor kicking repeatedly or change position constantly unable to get comfortable (none of which helps, but eventually I get too tired to be awake anymore and fall asleep at some point), but I don't get out of bed and pace the room... I hear a lot of people saying they have to get out of bed and pace, so I was thinking since I don't do that maybe it wasn't RLS. I was actually a little depressed yesterday thinking I had to start all over from square one trying to figure out what's wrong with my legs, why I can't ever sit or lay down and feel normal or comfortable.

Reply

ookla...I believe it is the same thing..mine is more like pain now rather than discomfort! I just use painkillers ....no dopamine stuff...don't want to go down that path! Prescribed co codamol works for me most of the time. Stops all the symptoms and helps me sleep. Hope that helps.

1 like
Reply

Unfortunately, ookla cant take pain meds.

Reply

Sad, but true... although I've been debating taking them anyway and finding a way to deal with the side effects (like antinausious meds for the vomiting and cpap for the sleep apnea)

Reply

As Elisse said, at this point, I can't take pain meds. I'm actually able to get to sleep at this point with 600 mg of neurontin.... it's the daytime/evening pain that's driving me crazy. I'm trying to titerate up on neurontin to try to find a dose 3x a day that gets rid of the pain, but doesn't make me feel foggy and out of my body.

Reply

se what I mean by confusing? lol It's not funny. at all. of course. IF you don't have to pace at all, it could be you have milder symptoms, or you may be right and not have RLS at all. I think a long doctor's visit is in order, because I don't think we can explain it any differently without mucking it up more and we all get dizzy. ;) But, we at least talking about it might be helping you sort it out in your own mind. I strongly suggest the doctor, though. But, keep analyzing, since you do have some overlapping symptoms.

Reply

yes. :) it is the same thing, we are just using different words to describe the same thing. RLS is characterized by 'relief by moving" whether it is called pain, discomfort, or that annoying feeling like soda bubbling in your veins. rlshelp.org on the treatment page, has a list of many different ways RLS is described by patients. There are dozens of ways people explain their symptoms with.

Reply

I don't believe one can say a third of rls sufferers have fibro. There must be millions of people in the world who have rls and are treated and coping successfully. Therefore they are not counted in any polls or are not on any helpsites as they don't need them.

2 likes
Reply

I said it backwards, sleep deprivation, 33% of all Fibro sufferers have RLS. Same percentage. ;) webmd.com/fibromyalgia/news... This web site and many others all say the same thing, as well as the US RLS Foundation. of course, we do not know every single person, since some are not diagnosed. Of the ones that are studied, and there are some big studies easily found on an internet search of reputable web sites. :) Happy reading!

Reply

That's the key sentence ........some studies on a limited number of people........otherwise it's a very misleading statement.

1 like
Reply

one of the studies had almost 5,000 women, so not small. I did not mean to mislead, but of course, we only know about people who were studied. You can look it up. It is true. And it was 33% of the people in that big study that had both. just saying it is all right there to read. ;) I think we need to focus on ookla on this thread. IT is confusing enough! LOL

Reply

for a study, 5,000 people is huge and they were followed for over 5 years.

Reply

according to studies, of course. Google Fibromyalgia and RLS. You will get hundreds of hits. ;)

Reply

I'm going thru the same problem I have RLS now for 13 years with severe pain, but now after seeing a neurologist a couple days ago he thinks it's something more than RLS like as in MS , but I have also considered fibro as well because my bones are sore. Anyone having such problems I would like any info if you feel like offering

peek-a-pooch@hotmail.com

Reply

You may also like...