Not sure if RLS or something else?

moraine · Post by **moraine** » Mon Jun 16, 2008 6:45 pm

I have read much information on RLS, so I know the common symptoms of it, but I am still unsure if that is what I have, as alot of my symptoms are different. I've seen a few of the same symptoms listed on here by other people, but still with differences.

I went to my doctor many years ago and tried to explain it to him, and his answer was that I have obbsesive compulsive disorder, which is totally wrong.

I am 30 years old, and I have had this as long as I can remember, I am pregnant right now, so of course the symptoms are ten times worse right now.

Anyhoo, I get it all over my body. Legs - calves, inner and outer thighs and the backs of my thighs too. Chest - in the muscles above my breasts. Arms - in my hands, in my forearms and in my upper arms. Neck and face - mostly in the lower jaw area, but often in the neck as well.

The feeling I get isn't so much that I need to move, though that helps, it's that I need to flex and contract the muscles. Or I need to jab my fingers, fists, knee, or whatever into the effected muscle and press or kneed into it almost as hard as I can to get some relief. For example, when driving in the car it is often very bad, I have to actually punch the tops of my thighs to get relief. Then I need to reach down and kneed my calves, though this is very difficult as I have huge calf muscles and they are always very hard, so it is difficult to get relief in this area. I need to stick my knucles into the jaw muscles on my face, or on my chest, in my hands or arms and press into them to get relief. Stretching my arms by holding them out as far as they go, or bending my hands back also helps. Or I flex or squeeze my muscles as hard as I can. I do these things all the time but then it is like I didn't do anything.

This happens to me during the day, while sitting at work, or sitting anywhere for that matter, especially while I'm driving though I'm not sure why. It bothers me while just standing and talking to someone, so that I stretch my legs automatically.

The funny thing is that it doesn't bother me as much at night, though I know it bothers my husband. I constantly roll around and move my legs at night, like I'm jogging in my sleep. I roll around and around. I don't really wake up from it and need to get up and move like it seems everyone else does. I sleep right through it. Though now that I'm pregnant I wake up and move around alot more. But I still don't need to get up out of bed and walk around. If I'm relaxing on the couch watching TV at night it usually isn't as bad, although now that I'm pregnant it is.

So I really don't know if this is RLS or not, I was hoping that if any of you had similar symtpoms then I would be able to decide if it is once and for all. Obviously my doctor has no clue. Thank you inadvance!

Post by **Polar Bear** » Mon Jun 16, 2008 7:00 pm

Hi Moraine,

I am sorry you are suffering so much. Whether or not it is rls that you have, we can sympathise with your distress. I have rls 24/7 but have some control and relief with medications, not an option in your case now that you are pregnant. Congratulations on your pregnancy.

Others with more knowledge than I have will no doubt respond altho at this time of year there don't seem to be just as many of us about. However, be assured it won't be long until you receive some guidance and support.

Take care, best wishes, and good luck.

moraine · Post by **moraine** » Mon Jun 16, 2008 7:03 pm

Thank you Polar Bear.

eliza · Post by **eliza** » Mon Jun 16, 2008 7:10 pm

Hey there Moraine,

Welcome to the RLS board. There are a lot of wonderful people here who can give you some great insights.

I’m on the way out the door, but I’m a lot like you so I wanted to give a quick reply. I have no doubt others will respond shortly. You described me with only a few exceptions. I do all that stretching, kneading - arms, hands, legs, feet, neck, back . . . I actually could add a few places you didn’t mention. The difference is I do wake up in the night with RLS. It usually starts as you described, but then it gets bigger and different and I have to get up.

Fortunately I’ve finally found a medication combination that works for me. Everyone is different in that regard though so I’ll leave that part to others. The pregnancy is of course another consideration with any medication you might take. The one thing I will say is what I do if sitting through something like church, and I start stretching hands, fingers, legs etc as far out as I can get them. A few little pieces of oxycodone under my tongue calms everything down for me – enough to get through the service in peace.

Take care, and welcome again.

Eliza

ctravel12 · Post by **ctravel12** » Mon Jun 16, 2008 9:20 pm

Hi Moraine and welcome to this board. I have never had any children so cannot give you any advise in that department.

There is a forum on this board called "Special Population" try and read as much of that you can. It does have some things about being pregnant and may have some of the answers for you.

From your post it sounds like you have PLMD (Periodic Limb Movement
Disorder) while you are sleeping.

I know other members will respond and will be able to give you some good sound advise.

Please keep us posted on how you are doing. You have found a great support group.

Post by **ViewsAskew** » Tue Jun 17, 2008 3:55 am

Hi Moraine,

I can see why the doc is clueless; they have a hard time with RLS that is a classic presentation, let alone something that is a bit different.

We don't have any RLS doctors here, so all of us respond from what we know about ourselves, from what we've researched, etc. The best I can offer is that it may be RLS, but if it is, it's definitely not the garden variety.

I also punch my muscles in order to get the sensation to go away. RLS is mostly about a weird, annoying, painful, or otherwise strange sensation that will NOT go away unless you move. So, the point is getting this sensation to STOP. Several of us do punch, however. My sister is also a puncher. But, moving also works. I just don't always (or can't always) get up and move, so I resort to punching.

I am also a flexer - I wind my feet, rotating my ankles; I rotate from the knee, and the hip. This is when the feeling is sort of subclinical (for lack of a better word) - I do this before the RLS is really taking off - it's sort of how I know that worse is to come. I also, at times, MUST really strongly stretch and flex my muscles upon standing up - but I've never really known what causes that need. Maybe it is part of RLS, but I don't think I've even mentioned it before.

Stretching is the method many of us use to calm the RLS - to make that sensation STOP. I talked with one of the RLS experts once and he said the following was key related to the 4 criteria:

1. The sensation requirement applies to the vast majority, but there ARE some people who don't have an active sensation; they just NEED to move.

2. That movement makes the RLS go away is the strongest of the criteria - if moving does not make it stop (even if it comes back as soon as you stop moving), it would be hard to label it RLS.

Some doctors ascribe to the following method of "testing" for RLS. If they aren't sure if it is or not, they prescribe a dopamine agonist. According to these doctors, the dopamine agonists work so well for RLS that if the symptoms do not stop when you take one, that it can't be RLS.

I'm not a doctor, but I have some issues with that. First, some people have side effects taking them that would interfere and it wouldn't tell you anything. Second, I just am not sure that they have enough knowledge to say this is true for certain. It may be...and it may not. They haven't studied it long enough to be sure.

That said, it might be an option. A second option is to test an opioid. Opioids tend to work for the vast majority of us.

My final thought is of a member we had awhile ago. She had RLS in her face, also. After much testing, it turned out that she did have RLS, but she also had another disorder. The post where she described it is here: http://bb.rls.org/viewtopic.php?p=31464 ... ght=#31464

I don't know if this is close or not, but the story may be. It's possible that there is more than one thing going on.

There are two ways to get support from an expert. First, the RLS Foundation has Ask the Doctor. Here is a link to the page: http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=471

Second, one of the RLS experts answers questions on the So. Cal. RLS Support Group's website, www.rlshelp.org. You can read through thousands of questions and answers and you can send in your own question.

moraine · Post by **moraine** » Fri Jun 20, 2008 9:29 pm

I just wanted to thank you all for your replies, much appreciated.

I checked on that ask a doctor thing, there doesn't seem to have been any questions answered since 2005, is it still in use?

Neco · Post by **Neco** » Fri Jun 20, 2008 9:34 pm

I'd say its certainly possible this is RLS, especially considering that you are now pregnant and it has gotten worse.. A lot of women get it when they are pregnant, and then it goes away.

I don't know about the ask a doctor thing, but you can contact Dr. B, he is always answering e-mails from people with questions, whether they have RLS, or think they may have it..

His e-mail address is somno@earthlink.net

you can go to www.rlshelp.org to read logs of all the e-mails he has received and replied to. You can tell him everything you've told us here and add any other thoughts too, and you'll likely get a reply within a couple of days at the most, I think.

That's definitely not OCD as far as I can tell.. Probably the dumbest diagnosis I have ever heard.. OCD does not manifest with physical symptoms as far as I know.. It's a psychological compulsion. Definitely don't go back to that guy, but if you have.. at least take all the info you can find on RLS, and maybe print out any correspondance with Dr. B you have.

Post by **ViewsAskew** » Sat Jun 21, 2008 12:21 am

Yes, Ask a Doctor still works. They post the answers in the quarterly newsletters, too. If you want the same post you have above sent to them, let me know and I will send it for you.