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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/2/2007 12:15 PM (GMT -7)   
  Has anyone ever had full body swelling/edema for no apparent reason?  My liver, kidneys and thyroid are actually checking out okay for once- but I keep blowing up.  When I walk or do any activity besides sit or sleep, it swells up even more and I look like I am 9 months pregnant.  I went up 6 sizes overnight.  The weird thing is the swelling is EVERYWHERE not just the stomach and legs.  Normally I eat healthy (no salt) and take care of myself of course.  I have Lupus CNS and this hasn't been on my list of symptoms.  I haven't taken any medications for at least 6 months, so that couldn't be it.  All the usual suspects have been eliminated.  I was hoping someone had an idea of where this one may have come from and/or any remedies to getting rid of it.  
 
  I appreciate any and all assitance.  Thank you - Kristin
 

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/2/2007 2:21 PM (GMT -7)   
Hi Kris, I have tried to respond twice now but my computer keeps kicking me off. I am really worried about you. That kind of swelling is not good at all. I hope you either see your doctor soon or go to the ER. I had this happen once and I had congestive heart failure. They had to give me iv's to reduce the swelling. Please see someone ASAP

hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 5/2/2007 3:50 PM (GMT -7)   
I gained 15 lbs of water weight twice in a matter of a few days and my doctors admitted me to the hospital both times.  My kidneys were involved but it took several months to get them under control.  Have not had any reoccurance since then but it was scary to gain so much weight.  I was doing a good imitation of the Michellin man.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/3/2007 6:29 AM (GMT -7)   
Thanx for the replys. I went to the ER and they just ran blood and urine tests. I do have chest pains/trouble breathing and sharp pains running down my legs and left arm at times, but my EKG was "normal". First test ran high blood pressure, second ran very low pressure. Main problem is the pulse rate is very erratic. Since I have the CNS version of Lupus, they always say my chest pains are neuromuscular. Still to this day, I have no clue what neuromuscular chest pain means. I use to ask all the time, but no one would ever answer me. I wonder if they know. So sometimes my heart goes erratic for no reason I guess. I do have mild MVP/regurgitation and high effusion rate 80% from testing years ago. As for kidneys, they are doing very well except the hematuria is getting worse. I don't know if only having a hematuria problem is a big deal or not. Generally, the ER and doctors are not helpful here and only can deal with the routine clients. Had pericarditis and needed to go an hour or so away from here just to get a diagnosis after our ER said I was fine the 3 times I went in (they said women my age, 37, don't get heart attacks - therefore, I'm okay). This is what I deal with. I feel like a neurotic when I go in there. I thought when I was diagnosed someone would pay attention and I would get the help I need, frustrated that nothing has changed. Thank you both and best wishes to you - Kristin

Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 5/3/2007 10:13 AM (GMT -7)   
Hi Kris,

My heart goes out to you as I know how frustrating this can be sometimes. I have the same issues, especially when I am not feeling well with a flare or if I have been in the sun. I am swollen now and I know others that have lupus that swell too. I too show normal EKG, kidney function etc. I am also severe Vitamin D deficient which can be a major factor in how our nervous system works, so I would demand that test. I cannot be in the sun at all, I get swollen sick, etc and swell and rashes. I take an herbal diuretic pill to help with the swelling and have found Claritin works to since I swell like I am having an allergy to something. Hang in there, but trust you are not alone. It will come down.

Leta
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 5/3/2007 12:37 PM (GMT -7)   

  Leta:  Thank you for your reply.  Your laundry list looks familiar.  Never thought to check Vitamin D.  Is that similar to pernicious anemia?  Apparently, I have something weird where B and Folic Acid show up as okay on my work-ups, but my blood cells are enlarged and I guess I don't process the vitamins right.  Thank you for the tip.  I have had some serious neuro issues - hemipeligia, heart, dementia (classified as alzhiemers), etc.  I don't believe they have checked my Vitamin D level. 

  What diuretic do you use.  I am using dandilion tea, but it isn't working.  Also using Milk Thistle.  Like you I prefer natural remedies.  

  I presumed I would flare a couple of weeks ago when I was the only one I knew of with a very bad "flu".  I didn't think edema of the entire body might still be part of the initial flare symptoms.  I'll keep an eye on that as my initial signs.  You would think after 10+ years, I would notice the signs.  I'm sure it's denial, but I'll blame it on the dementia yeah - Thanks again and best wishes - Kristin

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