I'm having a new "symptom". I'm starting to have what seems like Restless Leg Syndrome. It usually only happens while I'm either trying to nap or sleep. I'm starting to notice it during the day as well.
It hurts. It's very bothersome. My legs feel like they're "alive". Crawling, and twitching but it feels like from INSIDE.
Usually taking a Tylenol helps, but I don't want to have to take more medicine.
Just curious if this is connected to lyme at all? Anyone else have this? Does lyme cause RLS?
PS - I'm taking magnesium citrate for it, but does not seem to be helping at all.
Posted by CaliforniaLyme (Member # 7136) on :
I got THAT yucky acronym along with so many others as my TBDs progressed!!! I would have to sleep on the couch and jam my left leg into the crease of the couch where pressure would help keep it from kicking out all night long- I would have to wedge it in really tightly!! GOSH I hated that. Hated so many things... that was just another and minor next to many but SO annoying!!! All gone IV Rocephin!!!
Posted by hatpianka (Member # 12244) on :
I had RLS before Lyme, and the Lyme seems to make it worse at times. I herxed a few days ago and the main result was the worsening of the RLS.
I take Mirapex for my RLS, but I understand your hesitance to take more meds. Narcotic pain meds help it, too, but I have a past history of addiction, so I don't go that route.
I would make sure you're getting enough exercise since I find that my symptoms get worse with pent-up energy. Stretching and hot baths before bed is also helpful for some people.
Posted by listenswithcare (Member # 10719) on :
Yes, I have a similar symptom. I call it "buzzing". It is more highly noticable in my legs, but is also in my upper body. It is more prevalent at night when trying to sleep and it gets worse if I am in relapse, so it is Lyme/co-infection related for me.
It would keep me up at night. Usually the best relief in the middle of the night came from stretching. I used to take Neurontin for it also. Symptom went away after my first course of treatment, but it slowly but surely came back during my relapse time. I am now on treatment again and it is much better, but not completely gone yet.
Robin
Posted by BJK (Member # 13251) on :
Hi,
I had this exact symptom (along with the dozens of others), very frusterating, it felt like something was crawling deep inside my legs, mostly at night.
This improved after a while on abx treatment for Lyme. I still get this but to a MUCH smaller degree.
BJK
Posted by elle (Member # 7721) on :
I had a sleep study done because i felt as if i kept gasping for air all night and it would scare the bageebees out of me. What they reported after the sleep study was that I didn't have sleep apnea but I moved my legs and startled myself 400+ times a night.
My nuero started me on requip which all my other docs thought was a reasonable and necessary choice given the situation. It didn't set well with me because I like to look for causes and then treat. RLS is a relatively new dx and I didn't buy that this was the correct dx. I also don't like being placed of durational meds without great consideration and I didn't want to take this med long term.
I went back to my bloodwork and looked for deficeincies. The one that stood out was iron and I knew that without Vit C that wouldn't absorb. My mg levels were okay. I started taking highly absorbable iron and drinking Vit C powder in all my water.
Within a week the "RLS" was gone and it hasn't returned in the last year. My ferritin levels continue to be very low and I continue to supplement C & iron.
In my case the babs & lyme use lots of hormones - D, pregnonolone, vitamins & minerals. Some people are really short on mg.
You may want to check your labs for what your low on and start there. If you don't have these labs, maybe your doc will run them for you.
Posted by cmty (Member # 12877) on :
yes I have this as well, I also have what I call restless arem, same symptoms, but in the arms. Very frustrating, I went through about I month of this every night, I hated night time. I took benadryl for sleep, it helped a little, I also noticed if I had any alcohol that day or even the day before, it made it worse. I think I'm getting used to no sleep.
Posted by blazinglyme (Member # 13320) on :
Hi disturbedme,
I have had this problem since I have had LD. (4yrs now).
It's exactly as u discribed! It wakes me up all the time. It drives me nuts at times.
I had all my blood levels tested, but they r fine. So I guess it's a lyme or co infection thing for me??
Best wishes, Blazinglyme Posted by gusgus260 (Member # 2120) on :
I've bin there, and done that too. It stopped when I stopped doing daily Rocephin IV's and Oxycotin pain killers (so I could continue to work). It only happened a few times a month, when trying to get to sleep at nite. It drove me crazy!!! I could only stop it by taking more Oxy., but since I was on them for three years, it didn't matter much to increase the dose the few times. I'm off both of them now, and haven't had it happen since. ~gus
Posted by lymeout (Member # 8045) on :
My daughter has had this for two years, but it is in her rear end! After being on some pretty serious painkillers all that time, we spent this summer trying everything to get this under control, because it is so bad, she can't tolerate it. Finally went to a clinic that does high-powered spect scans. They showed an overactivity in the parietal lobe of the brain, which controls stimulus sensitivity - light sound touch, etc. The doctor prescribed trileptal, an anti-convulsant. Even with a small dose, she has been able to cut down the painkiller dose; so we have hope that this will tame it. Every time she starts on abx, this sensation gets so bad that she has to stop. This time, she has been able to manage it and continue the abx. She also has the light and touch sensitivity. I haven't noticed her complaining about them lately - maybe the sun sometimes. She had tried other things like cymbalta with no success. Maybe we have a winner!
Posted by katebow (Member # 13422) on :
I have had rls for a few years now.....recently I have noticed that when i take off my (tight) knee high stocking and lay down...the rls kicks in. so now I always keep tight socks on when I am laying down, it has almost completely eliminated the rls.
Posted by Marnie (Member # 773) on :
I have restless legs, but do not have lyme (sis does).
Pycnogenol 1mg per pound of body weight per day works absolute wonders.
So if you weigh 120 pounds, you would take 120mg once a day. Follow?
It is the ONLY supplement I can truthfully say I felt an IMMEDIATE HUGE difference...within an hour.
This suggestion came from a retired ID doc down here (Florida).
It is an amazing supplement. Must come from a good source. Made from French Pine tree bark.
Expensive, but worth it, IMO.
Posted by DolphinLady (Member # 6275) on :
This symptom improved for me with rifampin for bart.
![[dizzy]](graemlins/dizzy.gif)