Restless Legs Syndrome (RLS) Discussion Board

Deb,
Yes, I've been there many more times than I would have liked. It sounds like something else is going on that is exacerbating the RLS. I'm not sure where you would get that checked out i.e. neurologist or orthopedics?

Kathy

.[/quote]Am I right or wrong... I think we never have enough sleep, we're always operating on a deficit. So it's easy to feel like crap after a "good sleep" - no matter how good, one night is not even close to enough to let us feel good. But kick enough glutamate and whatever else is needed into our brains and we do feel good, or we think we do -
whatever good means to us now that it's been so long since we've been truly rested that our perception of feeling good is distorted.

Or am I wrong? Am I perhaps actually sleeping well and I just feel like crap all the time because of my meds, or because I don't have the right attitude, or because the moon has a crack in it?[/quote]

I think you are right, we never get enough sleep, always behind. Even on the days where I feel pretty good, I'm tired.
No, this leg thing is definitely something else. The last few days, I'm having more trouble walking, but this time I know it's not my hips or knees. I have an appt. May 20. I think it's coming from my back.

think you are right, we never get enough sleep, always behind. Even on the days where I feel pretty good, I'm tired.

No, this leg thing is definitely something else. The last few days, I'm having more trouble walking, but this time I know it's not my hips or knees. I have an appt. May 20. I think it's coming from my back.

Good you'll get it checked. It's so hard to figure out when multiple things are happening. I hope your doctor can make sense of it.

Doctors office just called. They cancelled the appt. They aren't going to go to that town anymore. The main office is too far away for me. Not sure what to do now.

I was just reading about how difficult quality care is to get in rural areas, as well as how hard to get insurance. I am so sorry. I am guessing there isn't another doctor who deals with this?

Not sure where I should travel to yet. I guess I will go back to PCP and work it out.

Don't give up pursuing it. You are important and deserve quality care!

About those jerks - have you timed them to see if there's any pattern to the jerks? When I was having augmentation my movements encroached on my semi-awake time. If the movements are patterned (like maybe every 20 seconds or so) that would make me think are periodic limb movements.

Except they can happen when I'm awake. I thought PLM was during sleep, and semi sleep.

PLMW os PLMs during wakefulness...

Further to Ann's comment - they can happen during wakefulness too. They're given a different name, but it's the same repetitive, involuntary movements.

PLMs of whichever kind certainly would account for things. The type of pain you've been having seems like muscle overuse - bad enough to make you limp when you walk, which means it's lingering, it's not RLS pain which is only present while you're symptomatic and doesn;t linger to affect the way you walk later. Also, the way you describe your symptoms lately is all about spasms and jerks, which sounds more like involuntary movements than the gotta-move I-can't-stand-it sensations of WED. (I suspect the burning you have is something separate like neuropathy.)

Opioids don't help PLMs which might explain why you're still exhausted.

I dunno. What do you think? Did they detect bad PLMs at your last sleep study?

You know, they really didn't say much about my leg jerks. Lately, it's been a little better. Of course, I know it will get bad again later. I do know that burning pain is nerve pain. Who knows.

Debs, have you been offered anything for the burning nerve pain - gabapentin/lyrica etc.
Forgive me if you have already mentioned this anywhere.

Deb, do you think the leg jerks could be periodic limb movements during sleep and wakefulness?

Polar Bear wrote:Debs, have you been offered anything for the burning nerve pain - gabapentin/lyrica etc.
Forgive me if you have already mentioned this anywhere.

I can't take Lyrics. Gabapentin makes gain weight. It would probably help, but I probably won't add it until I'm desperate. No sleep