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New to this forum. Can you tell me if these symptoms are anything you know about?

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Lupus
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Posted 3/27/2011 6:50 PM (GMT 0)

I have been extremely tired (and only in late 30's age), very painful joints, swollen feet/ankles with numbness in my feet and hands/arms often, very swollen lymphnodes around neck, under arms, groin, a rash on my face and chest that gets worse when I go outside sometimes or almost goes away when I stay inside. My stomach is very swollen and have severe pain in my pelvic area where a urologist finally diagnosed "IC" (Interstitial Cystitis) but I am told that although I do have those symptoms, most of my symptoms are not IC. Last spring (from Jan.to June) I had an "episode" for lack of better words where my arms/legs went completely numb (doctor pricked needles with bleeding and could not feel), had ringing in ears, very low potassium, and very dizzy. Had extreme thirst and urinary frequency. Only thing that helped was corticosteroids at higher doses. Finally after 3 months on these steroids, the symptoms mostly disappeared but been having the other issues pretty much since then (except the pelvic pain only got severe around Nov. in the fall). Has anyone had these symptoms or have any idea what is going on? I am working on my doctorate right now, help run a business, and have a beautiful 1 year old son that I am desperate to get back to my "regular" life and been so tired and in pain all the time I am just thoroughly frustrated. Been stuck in bed now almost totally for last few weeks and starting treatment Tues for the IC. I am told that it does not cause most the symptoms I have though--only the pelvic pain/urinary urgency, etc..  Can anyone please help me? Thank you!

Posted 3/28/2011 12:32 AM (GMT 0)
Your symptoms are a lot like mine. Unfortunately, I have no diagnosis yet, my doctors just keep telling me I have an autoimmune disease, but they don't know which one. I can't really say whether or not you do have it. It's hard to diagnose Lupus because ANA and rheumatoid factor tests can be negative even if you do have Lupus or a similar disease. Swollen lymph nodes, painful joints and facial rashes are all signs of Lupus, however they can also be signs of other autoimmune diseases. If I were you, I'd also look into having a blood test for Sjogren's Syndrome, which is an autoimmune disease that can be co-morbid with Lupus, and since you described having a dry mouth.

Post Edited (pink blobs) : 3/28/2011 12:53:03 AM (GMT-6)

Posted 3/28/2011 12:35 AM (GMT 0)
I am sorry you are going through so much.  Many of your symptoms are similar to Lupus, but not specific to.  Have you been to see a neurologist or rheumatologist?  My biggest questions would be: are you getting enough sleep ( 8-10 hrs. a night), being really picky about what goes into your mouth (avoiding sugar, white flour, too much salt, fatty dairy products), and moving your body to the point of sweating once a day?  From the people who suceed the most with auto immune disorders, I have gleaned these tricks.  And when I say suceed, I mean they are commited to taking the best care of their bodies, and therefore stay in remission for longer periods of time than when they are more lax.  This of course does not mean they don't have flares...you can do everything right and still have flares.  That is the nature of the beast.

I wish you the very best in your upcoming treatments.  On a personal note...How are you changing for the better through ths whole illness?  Is it challenging you to look at each day with new eyes?  I hope and pray you are not struggling without seeing some fruit in it all.  Be blessed...in whatever is hard for you today.

Posted 3/28/2011 2:35 PM (GMT 0)
Thank you! I am trying to live a healthy lifestyle and always have in the past--plenty of exercise and activities all day, healthy eating, etc.. but recently I was put on an IC diet which cuts out the majority of fruits and foods that I was used to eating (I can eat blueberries, melon, and pears) which is something at least but very strict on no tomotos, onions, acids, potassium, etc.. really strict. So I am just adjusting to that and planning to meet with a dietician or nutritionist to help me plan healthy meals under the circumstances (also since my husband is diabetic to find meals that are compatible for us and the children). I honestly don't sleep well. I am up a lot due to the IC which keeps me running every hour or two--so that is a problem but not one I can do much about at the moment until the treatments kick in a little better (they say probably around 4 months but I feel hopeful it could be sooner according to others' testimonies to their own treatments). 

I am going to see a rheumatologist if my insurance will allow me at this point, but my biggest question is whether the symptoms I had mentioned sound like non-specific autoimmune reaction or closer to lupus? What struck me when they told me that I might have it is that the one thing that has consistently helped me was corticosteroids and that seems to help others with it...?!  But then again steroids can help other conditions too... I just really want to find out exactly what is wrong so I can tackle it head on and get better. I am trying hard to get back to normal but am just so tired all the time, in so much pain, and the swollen stomach makes it like I am pregnant but not--so hard to bend--housework, etc...  I thought I would ask first to see if it is worth going through a whole round more of tests with the doctors on this as I am sick of doctors, treatments, hospitals, and medicines at this point--but if that is the root cause of the IC and other issues, then obviously I need to do it so I can get it all over with.  Thank you for your time.

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