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EGIZERB
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/27/2010 2:04 PM (GMT -7)   
Hi everyone, I'm 43 yrs old and I have had SLE most of my life. Now that I'm getting older I have noticed my flares are coming closer together. I also now have Sjogrens and I'm back on Steroids and Methotrexate. I've noticed some issues with my feet this time, tingling and a wierd vibration like sensation (I know it sounds crazy) has anyone experienced anything like this? I am new to this site and it's nice to find people who can understand what we go through each and everyday.
Thanks

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/27/2010 3:42 PM (GMT -7)   
Hey Egizerb! Welcome to HW, hope you stick around :)! This is a wonderful forum full of supporting and caring people. I have something simular that you describe except it is in my thighs and hands. Almost feels like a cell phone vibrating on my hands or thighs. Not sure what it is but hopefully someone will come along that does know!!!

EGIZERB
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/27/2010 4:16 PM (GMT -7)   
Thanks Amy, I'm really happy I found this site. I hope someone can shed some light on this feet issue. At the moment I have my rash back on my stomach and chest I can't stop itching it. The steroids are not calming anything down yet.

Thanks,
Rhonda
MCTD, SLE, SJOGRENS

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 7/27/2010 4:41 PM (GMT -7)   
My Dr has identified these feelings as a mild neuropathy. IE mild nerve inflammation
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


EGIZERB
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/27/2010 4:59 PM (GMT -7)   
Thanks Lynnwood, did your doctor give you anything for it?

Rhonda

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 7/27/2010 5:09 PM (GMT -7)   
Just the normal anti-inflammatory meds. Ibuprofen Piroxicam/Feldene
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 7/28/2010 10:29 AM (GMT -7)   
Well I have not been officially diagnosed. I did have ANA test done it was 1:160 showed antibodies mostly found in sjorgens and SLE but yes I have issues with my feet. Sometimes they hurt for seemingly no reason (I wear flats and my work does not require much walking I sit in my office at my puter, yes the field of law is so exciting lol). Anyways I was having issues with my ankles too like it felt like someone was sticking a screw in them they just hurt. I hope when I go to Dr next month they can help me. I get the strange tingle you speak of in my feet and up my legs at random.

dickson
New Member


Date Joined Jul 2010
Total Posts : 6
   Posted 7/31/2010 3:05 AM (GMT -7)   
sad  Hi everyone i've been diagnosed with Sjogrens & Lupus for about ten years now I've been quiet fortunate I was able to hold down a full time job with flare ups being very few that was until november 2009 when things went crazy.I no longer work at all. I have had numerous flares and I have a lump in the top of my left eye(soft tissue swelling) pain in my neck and in my shoulder(left side)and numbness in my elbow down to the forth and fifthe fingers of my left hand. I am being treated with an increase in predisone and am on Imuran and in Feburary I started on a trial drug for SLE but things still don't seem to be improving> I am also suffering Lupus headaches and eye problems. This is really starting to get me down which is worring as I am normally a positive person but i'm starting to stress, Have any of you experienced similar flare ups like this and how long did they last? I would appreciate and feedback or help anyone can give me.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 7/31/2010 7:34 AM (GMT -7)   
Welcome to our forum Rhonda and Dickson! Rhonda, I agree with Lynnwood that the vibration you are experiencing sounds like neuropathy. I have it in my right thigh.
Lawchick, I have lots of problems with my feet. I have pain on the sides of my heels just below the ankle that is diagnosed as plantar faciitis. It hurts terribly when I first get out of bed and the pain shoots right thru my heels.  Physical therapist recommended a night splint which I bought and it's a big help.
 
Dickson I sorry you're having such bad flares. I've had numbness in my hands/fingers which went away. You may want to talk to your rheumy about changing your meds. I started with plaquenil (like we all do) and prednisone then added methotrexate, changed to immunran and finally asked my rheumy if I could try Cellcept. Although I still have flares and lots of small problems, my cognitive issues are much better with Cellcept.  Also, you should buy The Lupus Book by Daniel Wallace. He covers almost every issue including headaches and eye problems. Once again, welcome and I hope you will stay in touch! Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 

cielo1103
New Member


Date Joined Aug 2010
Total Posts : 4
   Posted 8/6/2010 11:52 AM (GMT -7)   
I recently had a flare up and starting getting these symptoms with numbness and tingling on my feet.  I not only got numbness and tingling but also got really bad spasms with shooting pain on my feet.  My toes starting looking like black and blues and then were turning like purple looking.  The doctor said it was due to poor circulation.  I could not walk due to the pain.  My feet had to stay warm at all times.  They could not be cold.  Taking a shower was a nightmare as soon as I got out I had to put fuzzy warm socks.  I was put on prednisone (steriods), plaquenil, lyrica. arixtra (blood thinner) and I had to take percocet on a constant basis to survive through the day without pain.  I am still on the path to getting better but still have not gotten 100% better. Its been about 3 months now. I finally decided to try acupunture and it really seems to help a little.
 
 
 

Kalani L
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/8/2010 9:09 PM (GMT -7)   
I too got this vibrating, tingle feeling, almost as if my foot was asleep and just starting to wake, only it lasts like an hour or so at a time. Mine happens after ive been exposed to light. usually after a full episode, i get lightheaded, dizzy, pale, sweaty bah bah... till i sit down. sometimes it lasts so long im afraid i will be paralyzed forever.
the closer together this happens the longer the paralysis, twitching and tingle last, the harder it is for me to recover.
But i have continued so far, now i feel achy, i twitch randomly, my legs and ankles pop alot, and sometimes i think my veins twitch, or almost have a feeling a quick wiggle of a worm, though im sure theres no worm in my foot lol
can anyone relate to that?
what does it mean?

Post Edited (Kalani L) : 8/8/2010 10:14:08 PM (GMT-6)


jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/13/2010 4:01 PM (GMT -7)   
I have feet problems too. I have noticed the strange tingling. The first time it happened it was reaooly funny. At least for everyone watching me. I was walking out across my yard. SUDDENLY... out of nowhere. jumped and screamed. I was wearing flip-flops, and it felt like I stepped on a snake. It absolutely freaked me out. Of course, as I spun around and nearly fell, there was no snake, and my poor kids nearly hurt themselves laughing at me do the "snake dance". Then I noticed that it happens a lot, even when I am sitting, laying down and it even happens when I am in the house and I know there aren't any snake. Hope someone can laugh.....
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