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EJRN
04-11-2012, 01:13 AM
I have never joined a chat before but as I sit on my porch in the moonlight I found myself lonely and in need of support (or maybe I just needed to vent, lol)
I have had autoimmune disease for most of my life but I have found that as I get older it has become increasingly difficult to deal with. I am currently in a a flare and somedays I just feel so depressed, angry, lonely, etc. Today was a bad day. I had insomnia the night before so I slept on and off most of the day with a heating pad on my back and over my ribs and ice packs on my head. I get panniculitis and the nodules are so tender over my ribs that some nights it's just hard to sleep. I have headaches and pain around my eyes almost everyday. My muscles ache, spasm, twitch, and burn. I get nerve pain, numbness, and crawling. I have very little appetite. My fingertips have been sore but thankfully my thumbs are ok so typing on my phone is tolerable. I am physically exhausted and emotionally drained. I hate hate hate having lupus!
I am a mother of two school aged children and it sucks having to tell your kids "sorry, I can't hug you today because mommy hurts". How frustrating is it to be so sore that you can't be touched some days?
I started back on prednisone in March and also started 400mg of plaquenil a day. It seems to help but it doesn't make everything go away. I am a nurse so I know what chronic means but it is still hard to accept that this is how I will feel on and off for the rest of my life. Sometimes I think of flares like others think of childbirth - I forget how bad the pains are until the next flare hits. Maybe it's a protective mechanism. When I feel good, I forget how bad I can feel at times. When the flare passes I start to wonder if I have exaggerated everything in my mind. Maybe it wasn't as bad as I thought? And then the flare happens and I wonder how I am going to get through each day without losing my mind. It makes you feel so crazy and worn down. Have I mentioned that I hate having lupus? Lol
I think I just finally needed to try and find others that can understand what I am going through - people who can relate. I am finally thinking of talking to my Rheumatologist about starting infusion treatments. Has anyone had good success with any of the infusions? I have a problem with allergies, as I am sure others with lupus must have too. I take xyzal in the morning and Allegra at night with Benadryl here and there for more acute reactions. My fear is that I will go in for the infusion treatment and need to pull out my epi pen. If anyone has any advice I would be very grateful. I just want to start feeling better now and start feeling more in control of my life instead of lupus controlling me.

debbie-b
04-11-2012, 04:50 AM
First of all, welcome to WHL and yes, we all can relate.
I am sorry, that you are going through a rough patch right now and hope your flare will be over soon.
The only thing, that I can suggest is, talk to your doctor about MTX. It has helped me and many others here. It is worth checking into.

Debbie

steve.b
04-11-2012, 05:15 AM
hi ejrn,
and welcome.
as a nurse you would have seen how hard it can be to get the right balance of medication.

with lupus, it can be very hard to find what works for you.
but if you manage to get the balance just right.......
things can get better.

unfortunatelly not all of us get this balance correct.
and it can change often, as the lupus effects different parts of us.

but it is possible.
that has been one of my great comforts when i hurt.
knowing it can get better.

magistramarla
04-11-2012, 10:09 PM
Hi EJRN,
Welcome to WHL. You've come to the right place for finding others who can relate.
I agree with Debbie. Talk to your rheumy about MTX. Also, are you taking Plaquenil?
I have lots of sensitivities to meds - I can't take steroids or any opioids. However, I have no problem with Plaquenil,
and I was OK with the MTX.
Take care - we all understand what you are going through.
Hugs,
Marla

EJRN
04-11-2012, 11:56 PM
I am taking the plaquenil. I wasn't sure it was working until I missed a few doses (I ran out and took a couple days to refill it). Within just a number of days my whole body hurt like I was run over by a truck. I have since made arrangements to have this medication automatically refilled at the pharmacy!

steve.b
04-12-2012, 12:37 AM
there is a few on here who have also made that mistake.
plaquenil takes months to build up enough to work properly.
but days to drop in concentration levels.