Just need to vent a little. I was diagnosed last May with Lupus. I was a mess. My hair was thinning, had severe joint pain, major fatigue, benign cold sores in my mouth, I was running low grade fevers, rosacea rash in a butterfly form, high ANA, positvie Anti-La and Anti-RO, positive Rheumatoid, high sed rate. I was placed on Plaquenil by my PCP/Rheumatologist.
I started a new job in the city (3 1/2 hour commute total) and changed to a new rheumatologist. She was rude/aweful bedside manner and was convinced I had Sjorgrens. I switched to another Rhematologist who was great. She listened to what I had to say, answered all my questions, and decided to take a wait and see approach and didn't want to confirm the Lupus diagnosis yet - preferring to be cautious. I was to follow up with her in three months.
That three months was this past Friday. About 9 days before I was to see her we were hit with some severely cold weather and I returned to work after a week and a half off. Suddenly I had severe pain in my finger joints (the middle joints and the ones closest to the hand), wrists, and then the bottom of my feet and my toe joints.
Believe it or not, when I saw her it was a relief when she said Lupus related arthritis and that it wasn't my Fibromyalgia. She asked me to increase the Naprosyn I was taking to twice a day and to call her if I didn't fee better in a few days. Needless to say, I'm going to have to call her tomorrow to get prescription strength because it hurts to walk and this typing feels GREAT!! Just kidding. (A little Pity Party humor).
I just think that over these past three months of feeling good before this flare I convinced myself that I only had Fibromyalgia and that I didn't have Lupus. Why was I so shocked when she said that? Why am I angry with my body? Yes, its attacking itself, but there's nothing I can do to stop it except try to take the best care of myself as possible.
She did mention a low dose of steroids if I can't get this pain under control. GREAT!! Maybe I can wear sweatpants to work because I can barely fit in my clothes now. Grrrrrrr....... My boss doesn't know about my illness and hits me left and right with things to do, to the point my head is spinning. I'm also taking night classes to get my Masters, working OT to get a little extra money to cover bills, Advisor to a club (I work in a University), member of another committee, etc. On the weekends I crash.
Now, I have Lupus again, and I'm angry, scared, and sad and just wish I could be "normal". Phew! That's me in a nut shell.... I'm sorry for the long post. Need a nap after that vent..... I know that so many of you have it so bad, so I'm sorry for being so dramatic. I'm just having a hard time with this emotional roller coaster.
here you go i know how you feel. the bad thing is that no one understands how u feel around u. they say they know but how can they when they do not have pain very day.
cathy
Angie, Many times when flu viruses make the rounds, I flare, as opposed to acquiring flu. Does your (very long!) commute bring you into close contact with others? I did a big commute for years, and my worst times were when my fellow commuters had communicable things.
I have pain year-around, especially sharp & widespread during damp weather. So when I feel it approaching, I bump up my OTC NSAID *before* the weather front hits, then ASAP, I cut back to my usual lower dose.
Are you still on Plaquenil? How much daily?
During your time off, did you by any chance take a vacation in some sunny locale? Just curious. I'm in the "anti-Ro" group, too, and I became very photosensitive, which is apparently quite typical of this subgroup.
Hang in there, OK?! Sending my best! Sympathetically, Vee
Thank you for your words of encouragement. Vee - I received a flu shot in October but my Rheumatologist is checking for Parvo Virus. Taking the Commuter Rail, Subway, and working in a University is a recipe for disaster, but I have to work and love my job.
I'm on 200 mg. of Plaquenil twice daily and I'm now taking the Naprosyn twice a day. I just had to go out and shovel about a foot of heavy snow, so, my wrists, hands, and fingers are hurting. Moist heat seems to work the best.
On vacation I stayed here in lovely snow ridden New England and now we are in the midst of a Nor'Easter and will have over a foot of snow where I live. I seriously need to invest in a snow thrower. Its just physically too much for me right now. I will take your advice about the NSAIDS. This is the twelfth day of my flare and the shoveling just put me over the top.
Vee, did you notice that your symptoms became worse as you aged, or was it just that it took so long to get the diagnosis? My health has been getting worse over the last couple of years and I'm concerned about the future. I want to finish my Masters and work in Higher Ed. but I'm just concerned that with this illness, I won't be able to do that. I think that is why I get so angry at times. I think I am just scared.
Thank you for your questions. I hope you are well!
Hi, Angie. I'm really glad to read that your current rheumie still has you on Plaquenil.
My symptoms definitely became broader & worse over time. But things got MUCH better for me when I started Plaquenil & stopped sun. But I still have pain (often, & very weather-sensitive) and fatigue (episodically). The snow shovelling you did would have done me in, too.
I hope your rheumie can help you thru this pain episode. It's really not good to let inflammation go unchecked, not to mention the misery. I let pain go too far sometimes, and it seems to really set in when I don't jump on it early enough.
Keep us posted, OK? If you can't get that snow blower right away, is there maybe a teenager you could hire on an as-needed basis? The main thing is probably not to stop moving, but to move more *gently*. And I honestly don't think an episode of pain, even a nasty one, necessarily means the roof is about to cave in on you, by the way. I've had quite a few since being Dx'ed. So I hope you likewise come thru this episode with nothing further! And quickly! Hang in there. All my best, Vee
Re: Had Lupus, then didn't, now I have it again? 
here you go i know how you feel. the bad thing is that no one understands how u feel around u. they say they know but how can they when they do not have pain very day.
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