Lupus & clammy skin?

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MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 11/21/2010 12:18 AM (GMT -6)   
Has anyone had the symptom of clammy skin with their lupus flares? I was outside maybe a half hour today & came in & noticed my face/skin was burning. I had my usual malar rash & then started getting weak/stiff all over. I took a nap but it didnt help. I tried eating but all that did was make me nauseous. I then started getting achey & got cold chills w/sweats almost feverish. A warm shower didnt help either. Has anyone else had this?

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/21/2010 7:40 AM (GMT -6)   
Hi!
Yes, and yes, and that grouping of symptoms was one of the reasons I was evaluated for "why, it must be premature menopause". That was after we played the "why, you must be depressed" game and then the "well, TSH is NORMAL, but maybe it's your thyroid" game. With months for med trials, and repeat blood work. Where you out in sunshine? That is often a big trigger for me, and I describe the clammy chill as a bone chilling burning, and the muscle weakness so complete I have to lay down, anywhere, somewhere, before I fall down. And the rest doesn't help. And get nauseated and dizzy, and there have been times I supported myself against trees to lower myself to the ground. My big 120 lb. shepard mutt actually learned to lean on me to hold me up, and let me use his neck to pull me up. I learned the hard way not to walk anywhere, thank God for my cell phone, and to be grateful I didn't break a bone when I fell. I have cns lupus, and taking neurontin was like a miracle cure for me. Hope your good days are better soon,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 11/21/2010 6:32 PM (GMT -6)   
Hi there. Yes I took a walk for about a haf hour outside with my bf and his daughter. I was covered because it was chilly out. Only my hands and head/face were exposed but it doesn't seem to matter, I still get the rash in all the same places whether they're exposed or not. Anyhow, Ive been on plaquenil going on 2 years now and it hasn't done anything. I was put in remission when I got pregnant with my daughter...now that im not breastfeeding anymore and shes 2 months old my symptoms are coming back slowly. I am also being evaluated for IBD and getting an MRI/MRA w/contrast dye because I have cns symptoms and have had seizures since I was 15. Only ever had 3 but all were grand mal. I was seizure free for 7 yrs after my first 2 and off meds for them for 5 yrs and then a week after I found out I was pregnant with my daughter I had another one out of the blue. Im now on a diff med for them. What were/are your symptoms with CNS lupus? I believe I have it but the docs dont seem to interested. Maybe the MRI/MRA will show something....before I started getting positive ANA's and CPK's in blood tests I was told I was fine and nothing was wrong. Then I saw a rheumy 3 hrs away and was diagnosed with UCTD, then SLE & now UCTD w/SLE features and now being evaluated for the IBD. She said if it turns out I have that then were gonna try Imuran or a TNF inhibitor. We have to do something regardless because the plaquenil like I said isn't working and ive been on the 400mgs everyday from the start. Bleh...hope something works!
 
 
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