posted
I'm three weeks into treatment. No huge changes good or bad except this RLS.
I'm sleeping more poorly cuz I have this urge to stretch and move my legs just as I'm falling asleep as well as in the middle of sleep.
It sometimes feels like bugs are moving inside my bones. I also get this during the day sometimes and even get the feeling in my arms.
I also get these other weird feelings not quite like the above symptoms but more of there is something malfunctioning in my brain like a switch turning on telling my body not to sleep.
My whole body will kinda vibrate inside and I feel like crawling out of my skin. It's like there is someone telling "dont go to sleep", you can't go to sleep" It so fustrating and can last for several hours.
Can anyone shed some light on this? I use to get these when I was pregnant but sence the candida diet haven't had much of this until now.
And Yes I get tons of magnesium and even taking a liquid iron.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I dont know if it is for you.
I can only relate MY experience.
I have a daughter,non-lymie, that claims she has restless leg. She takes a couple tylenol at bedtime and goes to bed earlier so she doesnt get so tired and the rl so pronounced BEFORE trying to sleep.
I call this 'restless body' cause it isnt JUST my legs,,all over uncomfortableness itching,,,bug crawling,,AND those times I take a tylenaol then it does help.
For me I find some food 'sometimes' triggers it more often. So see if it is in ANY way food connected. For me potatoes,potatoe chips, and popcorm,,sometimes,not always,,,makes me crawl out of my skin.
Hope something helps,,,it is the pits!!--still --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
I'm sorry you are going through this. It is not fun!
I had these exact symptoms, and thankfully they have gone away. I pray they never return. I used to get RLS everywhere: arms, abs, hands, back. I had to constantly stretch to get relief. I also had periodic leg movement and the "don't sleep" syndrome. Buzzing or vibrating in your limbs is generally caused by nerve irritation.
A (DUCK) neurologist put me on Requip which was the deepest pit in hell. I don't know if it was a herx, but it definitely made my symptoms worse, and made sleeping inpossible. I actually was awake for three and half days straight, dilerious, twitching, and hallucinating. My RLS finally went away after about the second week of IV antibiotics. Good Riddance! I also take vitamin E and eat iron rich foods like spinach. This helped.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
Tylenol does help, but (for me) Tylenol PM or Advil PM made things worse, and I would have all the RLS symptoms but be completely out of it from the drowsy effect.
I was also told by my co-workers to rub a dry bar of soap on my legs and arms before I went to bed, and then just stick the bar under the bottom sheet near your feet. I thought they were crazy, even though they are all disability counselors (myself included). I tried it as a last ditch effort to get some relief, and it did seem to help a little. Why? I have no idea.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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Caffine use to trigger it but I haven't touched that in years.
I'm wondering if the dmsa for my mercury chelation is causing it by draining my mineral stores?
Anyone else get that feeling like someone is shaking you telling you you can't go to sleep. I sure wish I could just tell that old meanie to go away and leave me alone!
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
YES and I figure this is Bartonella symptoms (or maybe lyme) but many people with bart have this.
Posts: 347 | From sweden | Registered: Feb 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I have experience with what they call RLS. But with me it happens after I've been asleep and deep into the night. Mine also involves more than just my legs.
I also have it in my arms and torso. It is painful. I toss and turn for the rest of the night when it happens. With me these sensations come and go all night once they start. I had lyme & company for a good 5-6 years before I started experiencing this.
Mine didn't start until about 3 mths after I had at least 2 more embedded ticks on me the summer of '05. Since by then I was pretty aware of what different type ticks looked like.
I'm pretty positive that those 2 ticks were lone star nymphs, after researching and comparision. I'm also pretty sure I got a heavy dose of bartonella from those ticks.
I had many bart sx prior back to '99, but then there was even more unknown sx that came about and happened and worsened after '05 bites.
These bart bacteria are as strong or stronger sometimes than the lyme bacteria. Based on my trying to fight them. I even know where they hide out. They have really done a number on my GI system, etc.
I'm still doing battle with the bart bacteria with my rife machine, supps, vitamins, herbs etc. Sometimes I win, sometimes they (bart) wins.
RLS, only happens to me maybe once a month or twice a month. If it was every night, I can't image what it would be like. My Interist gave me samples of new drug for RLS. I didn't take them, I decided to try a supplement recommended instead. I took it for 6 weeks.
I haven't had an RLS episode in 3 mths period. Thanks be to.....I've forgotten who recommended it to me? It's worked so far.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
It sounds to me like some folks get RLS-like symptoms with Lyme.
Yes, I have Lyme and babesia, but I had RLS first. At least that seems to be the case.
I take Mirapex for RLS and have for years. It works wonders with no noticable side effects.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I heard the one with the bar of soap too.
OTHERS say it really really works as hoky as it sounds
I do believe there are worse things in life,,,than sleeping with a bar of soap,,,whats the harm??
I heard that ivory soap works best!!
I cant imagine it causing MUCH damage to your pysche,,I will pass on the comment I WAS gonna make!!since IB--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
If you have been taking acetametaphen and its in lots of things now when you stop I got this restless leg syndrom it took about a week for it to go away afetr stopping acetametaphen.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I take no OTC meds, and no tylenol. Just my vits,herbs and abx.
I don't doubt the wireless stuff. I minimize all that with no cell phone and nothing electric in my bedroom except two lights.
I live pretty rural but a cell tower is about 4 miles away.
Husband tested for EMF on cordless phone and it's very minimal compared to the cell phone yikes! I'd never put one of those things to my head again!
Thanks all
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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I used to have these symptoms, my legs felt like there was something crawling up and down inside and it seemed the horrible feeling made everything else worse.
All I could picture was torture...it was awful.
I still get small twitches and pain comes and goes but thankfuly this left as I progressed in treatment.
Sometimes they are stiff and I have to stretch alot but no more feeling like bugs inside or vibrating....there is hope.
Ive been in treatment for about a year now and posts like yours remind me always where I have been...it was so hard
Hang in there
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
Yes it is torture. I dread going to sleep at night.
I want to get up and walk around when it happens but I'm so tired and weak I just stay in bed and suffer.
Just did a Epsom Salt bath with lavender last night still had it but not as bad.
Gonna try the soap thing tonight I don't have Ivory but have my nice natural coconut soap. Hope it works!
zzzzzzzzzzzzzzzzzz
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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I found out that saunas help a bit. Also infra red lamps can be helpful. Also hot baths and magnesium and B12 supplementation.
Also I think it has to do with bart. Maybe add a bart treatment along with it.
Posts: 347 | From sweden | Registered: Feb 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I have had this so bad at times that it was excruciating just to be in my own skin! It went away for awhile and now it's back since starting Zithromax.
I also had it all over my body. It was like a tickly/nerve overload feeling. Stretching helps a little. I also have a very powerful electric massager that helps. While I'm using it it makes the sensation a lot worse but seems better afterward. I've had it really bad in my back lately along with a lot of stiffness. The other night I made my husband press on my back and the counter-pressure helped a lot.
I also took an Epsom salt bath the other night and it seemed better.
I e-mailed my Lyme doc about it and she said she thought it was a die-off. I also had it so bad before getting dx that I would just curl up in a ball on the floor and rock back and forth b/c there was no escape from it.
It's a terrible feeling to be uncomfortable in your own skin, I know! Hope you feel better soon! Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I know exactly the feeling in the legs you are talking about. I call it the "creepy Crawlies". I had this before I got Lyme. It turned out to be a symptom of my thyroid. I do not get it as often since on Synthroid, but when my Lyme is bad it does come and go. I have not found a treatment for it besides stretching and walking around.
Posts: 15 | From Connecticut | Registered: Feb 2008
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posted
Some of what you say sounds like restless leg syndrome. With me it feels like bugs are crawling on my legs. Torture. You have to get up a move to stop it but when you lay down and try to sleep it starts again. I take Mirapex for it and it is wonderful. I couldn't live without it. Ask you doctor about it.
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