I'm real pleased to find out my CFS/FM/ME condition may be lyme.
Now I'm wondering if restless leg syndrome may also be part of the package. It would be so nice if that went away with the rest of it.
Anyone know?
Posted by sixgoofykids (Member # 11141) on :
I get RLS when I get anemic, and it goes away when my hemoglobin is at a normal level. Are you anemic? Even slightly? I never was severely anemic ....
Posted by daisys (Member # 11802) on :
sixgoofykids, I just did a search, and should've done that first because it's been discussed often on this board. I've done everything everyone has suggested, and it's been under control for a long time.
Your suggestion is a good one--however, from what I just read, I'm guessing that it's a sign of herxing for me. It's not been a problem for a long time, but last night was the worst case in years, since starting on mirapex. I ended up doubling up on my dose.
No gambling or mad shopping sprees for me, so the mirapex has been a good med for me.
Posted by disturbedme (Member # 12346) on :
I've had some RLS problems. They aren't really bad, but I have what feels like RLS once in a while.
Sometimes it'll wake me up or won't let me fall asleep because my legs feel like they are alive. It's hard to explain. Sometimes when I'm awake, I feel them doing what feels like moving around inside. Sometimes my muscles just twitch a lot in my legs as well.
Posted by daisys (Member # 11802) on :
Disturbedme, I hope you are getting better. I don't know your background, so wonder: Did you have RLS before treatment, and now it's getting better?
And to the private message sender, whose mailbox is full: Thank you for the reassurance and information. I appreciate it.
Posted by D Bergy (Member # 9984) on :
Magnesium deficiency may not be helping with RLS.
Since you have Lyme you are likely low on Mg. Epsom salt is a cheap source of Mg.
D Bergy
Posted by daisys (Member # 11802) on :
D Bergy, You're right. I'm sure I'm always low on magnesium. They say all Americans are. I do eat a lot of organic greens every day, but know the soil maybe isn't as rich as in the past.
I take Magnesium plus (From Prohealth) which is 200mg of magnesium amino acid chelate. Later in the day, I take magnesium malate. Another time, I taks vitamin powder drink, which contains mg glyconate.
I save the epsom salt for my detox bath (every day, and sometimes twice).
Even with all that, sometimes I feel the need to take extra. Thanks for posting a valid point.
Posted by CaliforniaLyme (Member # 7136) on :
Along with lots of other acronyms (CFS, FMS, MCS) I got RLS from Lyme disease.
I would have to jam my left leg in between the couch and the cushions to have it held in place, otherwise all night along- agh!!!!!!!!!!!!!
It went away 100% with IV Rocephin never to happen again. Thank goodness!()!!!
Best wishes, Sarah
Posted by daisys (Member # 11802) on :
CaliforniaLyme, Thank you! I'm glad you're around to encourage us new ones.
I'm hoping I continue to do well with the oral doxy/ceftin. I guess 6 weeks isn't much time to estimate progress around here, but so far, so good for me.
Posted by TexasLyme (Member # 11920) on :
daisys,
I'm with CaliforniaLyme. My RLS, twitches, and most other things went away with IV Rocephin.
If your Dr. does prescribe Rocephin, MAKE SURE you do liver and gallbladder support at the same time.
Be well Dave
Posted by daisys (Member # 11802) on :
TexasLyme, Dave, Thanks for the supporting post. I will definitely bring that up if my LLMD wants me to do IV Rocephin.
I know some who have done fine after losing their gall bladder, but I'd like to keep mine anyway, funny quirk of mine. Posted by Kerryblue (Member # 4077) on :
Have had for yrs. On neurontin helped for long time. Now it is back & with vengeance. When not really bad drink quinine or they quinine pills for it. I rather just drink. Well, know for yrs. to treat.
They also found Parkinson`s meds. work. I said 10 yrs. ago this feels like a mild form.
Makes sense since chetes have probably screwed around daily with neurotransmitters. We know we have dopamine prob. linked to Parkinson`s which is probably just another co-infection not found or spoken much about.
So many these immune disorders with some name attached as Lyme which is real is not the disease. Mine starts at 2am & has kept me up with pain, nausea does not help either.
I am not on treatment, Take a lot magnes. So many symptoms, I doubt we have 1 working correctly neuro transmitter. Yeash, makes bod. & help messy situation. Why we do not respond to what treatment someone else is on. Big factor how long, how many co-infections +++.
Also bet Many of us our para-thyroid, many do not check probably smaller than grape non functioning. Many factors for all these crazy awful symptoms. Keep In Touch. If anything helps love to know?
Huggggsss, to all in need....
Posted by daisys (Member # 11802) on :
Kerryblue, I've been able to keep RLS in check with mirapex. Some people get compulsive on it, but that hasn't happened with me.
I was on neurontin for it too, but gained a pound a day on that. I told the doctor I consider obesity a bad side effect and stopped taking it. It isn't in the literature, but it's common to gain weight on neurontin.
And I can't remember exactly what I heard, but I think quinine is no longer advised for RLS. I used that many years ago.
Mirapex is a parkinson's drug.
Hope you find relief soon.
Posted by Mtgirl (Member # 13278) on :
I'm sorry to hear you have RLS. Out of my long list of symptoms, RLS and periodic limb movement have been the worst. I have found that vitamin E and (brace yourself) rubbing a dry bar of ivory soap on my legs helps. I thought the bar of soap thing was total science fiction, but it has helped. Dr. Gott has discussed this many times in his syndications.
As for meds, I was placed on Requip, but honestly, it made me SO SICK. I really thought my body was dying, and it caused horrible insomnia, which it's supposed to help!?! If the vitamin E and soap don't work, I'll take an Ambien which usually knocks me out.
There definately is a connection between Lyme and RLS. No one really knows why RLS happens in the first place, but it does tend to run secondary to many illness, and neurological conditions.
Posted by daisys (Member # 11802) on :
Mtgirl, I was raised in the mountains too--the Rockies. I've lived at sea level for many years, but you can't take the mountain girl out of me.
I've heard of the soap solution. I think I tried it one night. Since mirapex works well for me, and no side effects, I think I'll stick with it, until I don't need anything.
One night last week, even after taking mirapex, I had a terrible time, it woke me up. I ended up taking another dose. Since then, it's hardly been a problem. I've dropped the dosage, and am thinking of trying to go without it.
Maybe all the bugs in the area that cause RLS were being evicted that night.
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Dave
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![[hi]](graemlins/hi.gif)
Have had for yrs. On neurontin helped for long time.![[group hug]](graemlins/grouphug.gif)
Huggggsss, to all in need....