Wait - do I have WED?

[bryher]

Hi, I've thought I've been suffering from WED for years now. And am focusing on something called Piriformis syndrome. But then I'm thinking maybe its not WED.

Then I found a post by ViewsAskew in a sticky in the "Just Joined" section. B/c its a sticky its closed, so I thought I'd post my questions here....some of them make me think, maybe, I dont have WED??

Anne's post has "questions listed in the Clinical Management of Restless Legs Syndrome book...that doctors to use with patients to help separate WED from other disorders."

She lists notes beneath each question including the answer that would likely indicate WED.

So I've then posted my answers and would be grateful for any feedback.



1. Do you experience the urge to move?
Yes for WED
Other conditions may cause discomfort and you wiggle around or change positions to get more comfortable. With WED, it's, "I GOTTA MOVE ALL THE TIME!" anxiety that you feel with WED.

ME: I dont feel like I gotta move all the time. Just one small movement, maybe to disrupt the nerve impulse, is all it takes for me. One uncomfortably jerk, and I'm good for a few mins.

2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
Yes for WED
Same as above for other problems. The pain or discomfort of other problems may increase until you feel you have to move to make it stop, but the motion is a resettling or repositioning, not a need for constant motion.

ME: same, as above. I cannot resist the urge. but for me its more of a "resettlling or repositioning". A quick jerk and its gone for a little. No constant movement for me.

3. Will the urge to move increase if you are in a confined position?
Yes for WED
With other problems, it doesn't matter if you are confined or not, the feeling is the same.

ME: this one boggles me. Does this mean WED people are confined like in a box I know that sounds crazy but not sure of the question. I get mine when I'm lying in my bed, but not confined. Sometimes I get it while sitting.

4. Do you have symptoms both sitting and lying?
Yes for WED
For other issues, you might only have symptoms in one or the other.

ME: 99% lying. Every once in awhile sitting.

5. How long do you need to be at rest before your leg symptoms begin?
For WED, the issue is that is starts when resting or relaxing. It would start relatively soon after relaxing.
Another disorder, not related to rest, might not start for quite awhile.

ME: doesnt happen when i'm just lying or sitting there watching TV (usually). 99% of the time its after I fall asleep, or just about to drift off. then i'm awoken.

6. Do your symptoms only begin when your legs are in a specific posture?
This gets at rest and relaxation. If you are in a posture that keeps tension on your body, it might not happen. But, when relaxed and resting, it would.
Other issues, such as piriformis syndrome, would occur only in specific positions, such as when the nerve was pinched.

ME: 50/50 here. sometimes I can tweak my legs and it helps a tiny bit. with that said I do think my WED may be caused by piriformis syndrome and is what I'm currently looking into with my doc. I thought Piriformis syndrome is causing my WED but maybe its different altogether?

7. How quickly do you get relief when you start moving?
Almost immediately for WED - other things would worsen or take longer to resolve

ME: immediately

8. Do your leg symptoms occur when you are walking?
For all but the most severe WED (including augmentation) or PLMW, this would be No for WED

ME: no

9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
For all but the most severe WED (including augmentation) or PLMW, this would be No for WED

ME: n/a

10. When are your symptoms worst?
With WED it's always worse at night. When it's not worse at night, something in addition or something else needs to be considered. In terms of activity, it's worse when at rest, when relaxing, when not engaged.

ME: at night for sure. follows same times as described by other WED sufferers here. Around 3-5am it gets so much better.

11. When you are symptoms least?
With WED it's always better in the early to mid morning, say starting at about 3 AM up until noon (somewhere in there) in terms of time of day. In terms of activity, it's better when busy, when engaged, when moving.

ME: same.

12. Do you find your symptoms are less in the morning?
Yes for WED

ME: Yes

Any feedback would be so appreciated and help me focus my energy.

PS - I WILL beat this. And when I do I am going to share my experiences with the world with the hope of helping at least one sufferer.

Thanks

[ViewsAskew]

I think it's great you posted. This gets at how difficult it is to diagnose in some cases, particularly when people have a sensation they feel is painful. When someone has the electrical/soda in my veins type sensations, it's more cut and dry.

Have you tried a dopamine agonist? Some doctor will use that as a way to determine if it's WED. A dopamine agonist should always work (if tolerated). If it doesn't work, that may help sort it out.

Piriformis is almost always related to a specific position. WED almost never is. But, WED can happen only when falling asleep, which people usually do when lying down. If you tried to fall asleep when sitting, would you get the sensation and urge?

I honestly don't remember what it was like to have a milder form of WED - when I could get rid of it easily - but I don't think I ever remember being able to just adjust my position a bit and have it stop. I seem to recall always needing a more vigorous sustained movement - even if just walking to the kitchen and back. But, I HAD to get up or do bicycle exercises or something like that.

[debbluebird]

To answer your question of a confined position, I think that refers to being in a car, or a plane. Something like that. Sitting there for several hours. I get symptoms during both. Also the jerk may be PLMD Periodic Limb Movement Disorder. I have both, WED and PLMD. My symptoms sometimes start when I start to relax, while watching TV. Later when I try to go to bed, and relax there it can start. Good luck to you.

[ViewsAskew]

To answer your question of a confined position, I think that refers to being in a car, or a plane. Something like that. Sitting there for several hours. I get symptoms during both. Also the jerk may be PLMD Periodic Limb Movement Disorder. I have both, WED and PLMD. My symptoms sometimes start when I start to relax, while watching TV. Later when I try to go to bed, and relax there it can start. Good luck to you.

Yes - I forgot to answer that. Confined means that you can't easily move around - as debbiebluebird said, in a car, theatre, plane. At dinner in a restaurant, you can easily change your position and move around. Hard to do so much in a tight seat.

[badnights]

I can relate to moving just a bit to stop it and having that be enough for a few minutes. That still happens when my meds are working but not enough.

I can totally relate to just having it when you lie down, mostly just as you';re falling asleep, because that's what happens to me if I try to sleep at the wrong time, when my medications aren't controlling it. I suspect you are slightly tense to keep it at bay, then as you fall asleep, you totally relax, which triggers the symptoms.

Caution on Ann's response to point 1 "Other conditions may cause discomfort and you wiggle around or change positions to get more comfortable. With WED, it's, "I GOTTA MOVE ALL THE TIME!" anxiety that you feel with WED." She doesn't mean all the time, I don't think; she means during all the time that the sensations are happening. Basically, the "urge to move" is an urge for locomotion, to walk or do pushups - to activate the large muscle groups in the affected limbs.It does not mean to move in the sense of shifting position. That said, when it's mild... I think the movement involved in shifting position is sufficient.

Maybe you have the (unusual?) condition of symptoms that are mild in intensity but severe in frequency? The diagnostic criteria don't allow for distinctions like that, important though they are.

[Polar Bear]

I totally get it with Beth's comment 'activiate the large muscle groups'. A wee tweek, a tiny jiggle.... forget it.
When symptoms start I get that strange non-feeling.... as if I can almost feel a sensation in my legs/arms but not quite..... but, boy, I know it is there. Within about 2 minutes we are in full WED mode and nothing will work except up onto my feet and get moving. I never seem to do 'mild' symptoms.

[ViewsAskew]

Caution on Ann's response to point 1 "Other conditions may cause discomfort and you wiggle around or change positions to get more comfortable. With WED, it's, "I GOTTA MOVE ALL THE TIME!" anxiety that you feel with WED." She doesn't mean all the time, I don't think; she means during all the time that the sensations are happening. Basically, the "urge to move" is an urge for locomotion, to walk or do pushups - to activate the large muscle groups in the affected limbs.It does not mean to move in the sense of shifting position. That said, when it's mild... I think the movement involved in shifting position is sufficient.

Thank you ! Yes, I definitely meant when that you get this ONLY when sensations/urge occurs.

[bryher]

Hi all, I posted this last week and then havent had a chance to come back. Thanks for all of the responses! So a few more points of feedback

- Have I tried a dopamine agonist? Yes! I'm actually on it now. I should've given a quick background on meds. I started on Requip/Ropinerole about a year ago and it worked great. but then I augmented. After a few months I was up to 3.5 mg once at night and finally everyone here on this board helped me realize I was augmenting. No doctor did, so thank you! I eventually after months weaned off it. Now my new doc has me on Horizant and 0.25 mg of ropinerole. I know, crazy after I augmented. But he seemed to think the two would work together, the Horizant taking away some of the augmentation effects. So long story short, the medications seem to help a bit with my symptoms.

- Getting back to how it feels for me. I can get the feelings when I'm sitting still for a long time, in a chair or on the sofa. But mostly its right when I'm about to fall asleep, or right after I've fallen asleep. Guess depending on how relaxed I am. For me the sensation is a horrible, creeping, electric, crawling feeling down my legs (more on the location later). Its like an electrical jolt that lasts about a second. And I cant ignore it. My relflex is to tighten all of the muscles in my legs, from my buttocks down to my quads and to my ankles. And then its gone for a minute. A minute later, if I dont get up and move around, its back. I could lie in bed, relaxed, and make consistent movements with all of those muscles, like flexing my ankles, or buttocks, and the sensation wont come back. As far as confined places, I would get it if I sat still on a plan for a long time. I remember years ago when I didnt know what it was I thought I was going stir crazy. No shooting sensation but definitely had to move my legs. I will have to try and fall asleep sitting up, but I think it would still happen.

I was so happy to find the above posts by Anne b/c I've been thinking I have something called Piriformis Syndrome, and thinking its giving me WED-like symptoms, or flat our WED. Piriformis Syndrome is where a muscle in the buttocks compresses, or literally grows around, the Sciatic nerve. When I look at Sciatica symptoms I dont feel I have them as much as when I look at WED symptoms. But I'm becoming more and more sure this is what I have. I know this b/c of my other techniques to manage the situation...

So Meds seem to help a little. But I would not be able to sleep at all taking just the meds. The only way I've been able to sleep, and not go completely insane, is by doing one ore a combination of the following:

1) piriformis muscle stretches
2) heat (extreme!) using a heating pad at 166 degrees on the buttocks/piriformis area. i've actually given myself minor 3rd degree burns b/c of this. but it works
3) extremely hot epson salt baths
4) my own special exercise - this is the magic bullet. without this the Rx or the above 3 wouldnt suffice. I walk over to a wall and standing on one leg, I do these very short, quick squats. Not all the way down as in a full squat but short burts where I bend my leg maybe 25 degrees. The idea is to get the leg tired and it works. I used to do 200 per leg but now I'm up to 400 per leg. Each rep of 400 takes 3 mins. When I started I did them on the stairs for a year or so. now I'm so good at it I just stand at the wall.

So here's my regiment:

1) before bed use the heating pad or hot bath to relax the muscle
2) then right before sleeping a series of piriformis stretches. at this point the muscle is very loose and easy to stretch.

- I usually sleep for 2 hours. On a good night its 3 and a bad night 1. but typically after two hours my symptoms start and I'm eventually woken up. I'm so acute to the symptoms I get up right away and:

3) do 400 mini squats on each leg. takes 6 mins but becoming really annoying.

then I can fall right asleep for another 1-3 hrs. This continues all night. Sometimes by 4-5am the frequency eases up and I can sleep until around 7:30 when I'm awoken by the symptoms.

Thats how I've been able to manage my condition for the past 3 years. I've tried so many things and feel like I'm close to solving the greatest problem I've ever faced. I'm now working with an Orthopedic surgeon on the Piriformis syndrome and may have a minor surgery to treat it.

So does this sound like WED?

[ViewsAskew]

I honestly couldn't say! Good thing you're working with the doctor. One of the problems with WED/RLS is that there are a few variants of it AND we describe and experience them based on our own experiences. So, there isn't much of a common language.

A lot of what you say is consistent with WED. Being really relaxed is a KEY feature of when WED starts. It's not so much the position or where you are, but that you're deeply relaxed. That seems to fit for you.

Is the ortho doc sure it's PS? Is there any test for it?

[bryher]

Yep, totally agree. And thats how I've felt all along - alot of variants and hard to tell. Thats why I'm thinking its PS triggering secondary WED, just a hypothesis.

Nope, my ortho is not sure is PS. B/c its a "syndrome" too its not easy to diagnose. We did xrays and an MRI of my pelvis and he didnt see anything out of the ordinary, which is frustrating. But honestly I dont think he has alot of experience with PS. Also hard to find someone who is. The treatments for PS are usually, in this order:

1) physical therapy. tried it and was a total waste of time b/c the PT didnt know about PS and nothing specific to piriformis muscle (my own stretches are better)

2) injections - had cortisone injections into both places. seemed to have a small improvement for a very short period of time.

3) surgery - an outpatient proceedure where they do a "release" of the muscle, cutting it where it attaches to the hip. its actually the first step in a hip replacement - release the muscle so you can remove the hip, or something like that.

I've researched the surgery and seems pretty simple, and done on an outpatient basis.
The good news with my ortho is he seems to be willing to do the surgery since it seems the injections helped a little.
B/c I'm willing to do ANYTHING I am all up for trying it. I have this feeling, a small dash of hope, that this is it.

[ViewsAskew]

Let us know how it goes.

[badnights]

For what it's worth, your symptoms sound exactly like WED to me. But as for whether piriformis syndrome can cause WED, I don't know, and I'm very interested. My lower-back pain became sciatica at roughly the same time as my WED got bad, so I have wondered at that coincidence. The onset of my severe WED was actually closer to the time I had a knee operation, so I generally blame the operation instead. The sciatica is clearly different from the WED, no similarity, and is usually relieved by deep piriformis stretches (but I have a displaced lumbar vertebra that probably contributes too.)

I also do squats to calm the WED, and I do similar tensing and relaxing in bed when the WED is relatively mild.

I too am interested in how this operation affects your WED. Others have posted here that they are sure their WED was related to low-back pain or sciatica.

[debbluebird]

I started getting WED/PLMD when my back started having it's issues. I think the nerves from the back caused the WED/PLMD. I ended up with spinal stenosis. It's just my opinion.

[rthom]

Is Stenosis scaring?

[debbluebird]

Spinal stenosis is a condition due to narrowing of the spinal cord causing nerve pinching which leads to persistent pain in the buttocks, limping, lack of feeling in the lower extremities, and decreased physical activity.