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Old 09-14-2006, 12:20 PM   #1
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Leg Sensation and Shivers

After I got sick back in May, after about 2 wks I recoup to nearly normal state. However, I have frequently had these sensation in my legs when I wake up after sleep (or occassional naps). The feeling is similar to a fatigue from frequent movement or exercise. Somtimes I am sleep for over eight hours and I wake up and my legs are tired and I feel this sensation from my knee cap downwards but nothing in my feet. I have not been able to exercise and only get movement from my job with is about 90% physical activity.

Over the past week, during my sleep I wake up to extreme shivers. This essentially rocks most of my body from the neck down. I am well covered at night and likely get warmth from SO. I'm not sure what proceeds the other, waking up or having the shivers. I do know a few nights ago the shivers were for a few minutes. The other occassions have been one session then I fall back to sleep.

Has anyone experienced this...

I finally got bloodwork drawned up during my OB/GYN exam and he ordered tests for Lupus suspicion since someone in my immediate family had it. Still not results but I'd figure I'd get some feedback on my recent issues.
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Old 09-14-2006, 05:44 PM   #2
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Pesh HB User
Re: Leg Sensation and Shivers

This sounds similliar to a problem my brother (who does not have lupus) has, called RLS or Restless Leg Syndrome. There's even a board on this site with information about it you might want to check out. I don't know a lot about it, but my brother's symptoms were similiar to what you've described, so I thought I'd let ya know about it!

 
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Old 09-14-2006, 08:21 PM   #3
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Re: Leg Sensation and Shivers

Hi JustNotFair
I know what you are feeling - it is not restless leg syndrom. I too have a feeling that comes on when I am sleeping or just waking. It feels as my legs are going to drop off. That is a good discription, like they are so tired from biking or running. It just goes up and down them like a wave and then it is gone. I don't have it every night, but I have had it often. I never think to ask the doctor when I am there. Going to have to write a note. I am on Plaquenil 200 mg, twice daily. Are you taking any meds?

 
Old 09-15-2006, 11:08 AM   #4
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Re: Leg Sensation and Shivers

Hi there! Yep, I have had shivers, but I called it shaking or tremors. First time was while camping. Woke up at midnight in my sleeping bag and it scared me that I was shaking so much. My husband put me and my 23 yr old daughter in the car and drove me home (1 1/2 hr drive) with the heat blasting. About half the way home, the shaking stopped.That was Sept 2005. I have had another bout of shaking at night, after I had been diagnosed this past March with Lupus and was on Plaquenil. Have noticed that I have a hard time with being too hot OR too cold. Cannot seem to ever be the right temperature. Last week, my dr ordered thyroid blood tests, and even a blood sugar test, but they were at normal levels. Best wishes to you.

Last edited by kidd123; 09-15-2006 at 11:15 AM.

 
Old 09-15-2006, 05:24 PM   #5
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Re: Leg Sensation and Shivers

Thanks for the response. I definitely think tremors/shaking is a better way to describe it. I had another short episode the night before last. The issue w/ my legs have been a bit more persistent here recently.

Still no word on my test results Well, other than a normal pap.

Thanks for the response; having a feeling that one other person understands can be so helpful.
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Old 09-15-2006, 06:47 PM   #6
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nickkaylee HB User
Re: Leg Sensation and Shivers

Definitely not restless leg syndrome. I have that (unofficially) but don't get it very often. Sorry I know I'm no help.

 
Old 09-17-2006, 04:57 PM   #7
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Re: Leg Sensation and Shivers

Yep, I have it, too.
I also have C-ANCA with anti-pr3...which we're still trying to determine if I do have vasculitis. I also have an unspecified peripheral neuropathy. I'm on Plaquenil 200 mg 2xday, prednisone (I've been on fo 8 weeks and tapered from 40mg) and Lyrica 150mg 3xday and Diclofenac, steroid eye drops, steroid nasal spray and Ambien CR as a nightcap
I had these same sensations, twitches, spasms or whatever this "thing" is for several months and prior to these medications. It flares at times and I don't have a definitive diagnosis for lupus, sjogren's or vasculitis.
A great observation made to me from a knowledgeable participant in a vasculitis forum suggested that maybe it could be plaque that could build up on the vessel wall, restricting blood flow, and perhaps causing irregular blood flow, thus these leg sensations.
I think he had a good point and just wanted to share the thought.
Gina

 
Old 09-18-2006, 09:06 AM   #8
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Re: Leg Sensation and Shivers

Yeah on Saturday evening, I continued to have the shivers. What was different was the occurrence of them while I was awake; however, it was about an hours before I feel asleep. On Sunday, the same pattern reoccurred, where they came while I was tiring and happen during my sleep.

My SO told me they happen more frequently than I realize; he mentioned occurences ever when I did not wake up.

I have a rhuemie appt next Tuesday. I have yet to hear anything on my bloodwork. All is still up in the air....
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Old 09-18-2006, 10:52 AM   #9
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Re: Leg Sensation and Shivers

Update

So, I finally get the answers to my bloodwork. Blood/sugar, cholestoral (says is really excellent), blood pressure, and all other vitals come up perfect. He runs through the Lupus test work and first says all test are negative. Then he says wait, and at this point he appears as if he is reading to then reaffirm everything "looks" negative.

I explain to him my bouts; he tells me he would still recommend me to see a rhuemie (I had OB run the bloodwork since I was already having an exam). Anyhow, he gave me a referral and said many of his patients recommend the facility. I may cancel my new appt and resched.

I know many of you went through several negatives. I do not want to have lupus but so many of my symptoms point in that direction.

BTW, he said I did not test anemic; I have in the past... The only other area I could think it would be is CFS or fibro or effects of carrying the sickle cell trait. While I do not have sickle cell, there is information supported how people may have effects to being a carrier.
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Old 09-19-2006, 10:15 AM   #10
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Re: Leg Sensation and Shivers

Thanks for the update, "Just not fair." That is great news that your blood tests were all negative. Try to stay optimistic about this condition. Who knows? It could be something as simple as hormones that are out of whack, or a harmless irregularity that the drs have never focused on before.
I hope that you see a rheumy dr that listens and helps you to be healthy--not one that just wants to write a script to have you experiment with. Our bodies are so complicated, that you need a dr who will work at helping you.
Hang in there. May you feel better soon!!!

 
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