Restless Body Syndrome?

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alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 9/26/2009 11:43 AM (GMT -6)   
Yes, I made this up. cool   But, I hear about people who have restless leg syndrome. My whole body feels like that! It doesn't matter how much or how little I do, when I try to sleep I just can't. I feel like I need to move my arms, legs, hands, feet, stomach, face...everything! It is so annoying. I thought it was a side effect from Lyrica...and then neurontin...but i am off of both now and still have it. Anyone else?
Also, it is 67 degrees in my house right now and I am freezing! I can't stand to be hot. I get physically ill. When it is 72 degrees in here I am sweating and dizzy and nausease. Now, 67 and my hands are going numb? What gives? Lol. My joints are killing me too. Oh, my hips and wrists. Ugh.
Plus, from my endometriosis surgery, my bladder is driving  me nutso. They removed most of the extra endometrian tissue from my bladder and they either knicked it or just irritated it...I can't remember which one they said. So, I feel like a have a bladder infection, but I don't. Does that make sense? I feel like I have to pee all of the time, but i don't. And even when I have to pee really badly, there is hardly anything. And, it burns. Oh, it is hard to start going and it burns so badly. So, she gave me those pills that turn your pee orange and numb stuff down there. It is helping a little bit, but she only gave me 5 days worth which confuses me. I had surgery on September 1st and have had this since 1 week after. I don't think 5 days worth is going to cure me.
I am just so worried that this is a permanent thing. I know, it most likely is not, I am still healing. But, I have a tendancy to think the worst:)
Well, enough complaining for the day. My sister just called and is taking me to lunch:) Yay!!!!
Talk to all of you later and have a blessed day!
Angela

PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 9/26/2009 12:24 PM (GMT -6)   
I had the 'restless body' syndrome as well: it went on for about six months before I finally realized it was getting worse, and I went to the Lyme doctor. I also had the bladder issues, and found that one treatment that really helped was Marshmallow Root (a very harmless herbal preparation you can get in most health food stores.) Urologists just threw their hands up in the air & told me there was nothing wrong, and antibiotics had no effect. Try it!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/26/2009 8:15 PM (GMT -6)   
Hey Angela,

I just recently complained about this. I thought it was my B-12 injections since I just switched. I'm just like you. My entire body feels that way. It's horrible. Usually, I can take a piece of my Klonopin and it relieves it but lately, it's not helping. I had it for about 5 hours straight the other morning. I could not sleep and it was driving me nuts. I told my husband that I felt like I wanted to bang my arms and legs against something, lol. This has got to be Lyme related.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 3951
   Posted 9/26/2009 8:37 PM (GMT -6)   
Homeopathic Causticum helps me when I feel the "restless body syndrome" symptoms.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 9/27/2009 7:30 PM (GMT -6)   
I already take Klonopin for anxiety, but I bounce between it and ativan. Maybe that is why some days it is worse than others. I will have to start taking Klonopin at bedtime and see if it makes a difference.
When I first got this, I would like rub on my skin on my arms and hands...not on purpose, I would catch myself. While i was rubbing, it felt ok, but as soon as I quit it was restless again. So, CG, I totally understand about banging your arms off of the walls!
I will try some of those herbal things you all suggested.

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 9/27/2009 8:56 PM (GMT -6)   
I also have restless body syndrome! I hate it. I can be so exhausted and feel like I can't be still. If I try to read it's really bad. I think it's because of nervous system damage.

alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 9/27/2009 8:59 PM (GMT -6)   
I think you are right cause that is when it started for me. My body does the "twitch" thing, well if you can call it a twitch. More like an earthquake too, but not all of the time. It will do it for like a week or a month or maybe even a day and then it wont happen for a while. weird.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 3951
   Posted 9/27/2009 9:00 PM (GMT -6)   
I've also been getting iron infusions once a week, and it seems the iron has really cut down on the restless joints.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.

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