I was wondering if anyone had info on rls and Chiari? I’ve done some research and it definitely appears to either b related or the symptoms overlap, that’s not really clear to me at this point. The thing is the rls used to bother me only at night and only in my legs. Now it’s throughout the day and in my arms and I’ve read this can happen and it can also cause twitching which I have in all areas of my body. So I guess I’m confused if I even have rls or is it Chiari? My ns says my herniation isn’t enuf to be causing symptoms but I have a ton and I’m not sure how I can have so many different issues and yet they all could be Chiari, sounds like Chiari to me but who am I to say? I know u all have had several different opinions on ur symptoms so I thought this would b the best place for this question! Thanks guys, Diane
Hi...
I never spoke with my NS about it...mainly b/c I moved 6 hrs away from him 2 mths after surgery!! Anyway...I think I have RLS...an orthopedic told me that is what it sounds like...
Mine occurs at night while I am lying on the couch or in bed...very nerve wracking!!! I know there is medication for it...but I can 't put another pill in my mouth...it is not that bad...more irritating.
I am concerned that your NS said your herniation is not large enough to cause Sx's.....studies have shown..size does not matter.
Good luck in this crazy journey!!! keep us posted. Just my 2 cents....you may think about seeing a different NS...what is the size anyway?? Mine was only 5mm and had a ton of Sx's.
Peace,
Lori
Diane,
I have rls as well and sometimes it's not a bother and other times it's the main symptom I have going on. Mine often starts mid afternoon and I constantly have to stretch my legs and back to make myself comfortable for even 5 mins. It's interesting you said it's beginning to affect your arms now too. I've noticed a similar feeling in my right arm and it definitely feels like an rls discomfort. If I don't fidget, it continues to build up until it's just unbearable. I'm waiting on my 2nd opinion appt, so I don't have any concrete advice to offer but I would journal everything that is happening and what symptom changes you've experienced.
Good luck to you!
Kellie
Diane,
I thought I had RLS, but it turned out that it was nerve damage from my Chiari. I would get the RLS feeling in arms and legs at all times of the day. It was worse sitting in the car for long periods of time or at night trying to sleep...on road trips I felt like I was going to crawl out of my own skin! I am now on anit-seizure/epilepsy meds and it has helped a bunch! (finding the right med wasn't easy, but once we did it has made a big difference)!
Good luck! Monique
I have RLS. Not sure I have CM. Here to learn more about it. I have many overlapping symptoms. Having MRI to find out. I have PLMS too.
I have Chiari and what is believed to be RLS. I take requip for it at bedtime. My legs ache off and on during the day as well. It is awful. If I forget to take the medication, I can't sleep. No ns has ever said if it is due to the Chiari or not. It started when my other Chairi symptoms started as well.
Hi,
I have been diagnosed with RLS as well. I should be diagnosed with restless whole body syndrome as that would be more accurate. I have had EMG/NCV testing and we know I have significant amount of nerve damage in both my lower legs and forearms/hands. I am on high dosage of Mirapex that they would reccomend for a Parkinson's patient; as well as, Lyrica.
Monique, I am so glad you mentioned crawling out of your own skin. I am so thankful that someone else understand that symptom. So often I think if I could just unzip and walk out of my own skin I would feel sooooo much better. Unfortunately, that's not an option.
Next week I am flying to Manila and I dread the long plane flight. I have to make sure I am up and about on a regular basis or I will go out of my mind!!!! Traveling for that long is BRUTAL!!! But in this case it's worth it as I am going to see my fiance.
NFRA (National Fibromyalgia Research Association) has an interesting chart comparing the symptoms of fibromyalgia, Chiari and compressed cervical cord. http://www.nfra.net/Symchart.htm There is a big fat question mark on chiari and rls?!?!?