little bummed no one wanted to talk today

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lupeemefogot
New Member


Date Joined Feb 2015
Total Posts : 8
   Posted 2/10/2015 3:16 PM (GMT -6)   
First time on here today. Feel like crap. noticed they don't have a Mixed Connective Tissue Disease topic. That kinda bums me out too. No polymyositis either. SLE, Mctd, fibro, anxiety , depression, poss. Neuropathy arms legs, poss.cns involved borderline parathyroid cant remember high or low. Cholesterol moderately elevated. I always feel sick and every time I have bloodwork done slighyly worse results across the board. I work 40, 2 kids(8 + 12), husband, 3 dogs, 2 sugargliders, a cat and I control it all. I don't want to. I'm tired and need to quit my job. Thinking disability just might keep me alive longer.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/10/2015 3:30 PM (GMT -6)   
Welcome to lupus forum.
I had to leave a dream job two years ago. It was the best thing for me because I was able to get a lot of my symptoms under control.
It was tough adjusting but it got better.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/10/2015 3:47 PM (GMT -6)   
Welcome,

We have both MCTD and polymyositis folks here as part of the Lupus group. One of your posts was on a thread about another member, you'd get more results on your own threads.

Right now we don't have that many folks who just hang out and chat all day long, but if you have specific issues or questions you'll most likely get responses within 2 days.

Glad you're joining us!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/10/2015 3:49 PM (GMT -6)   
lupeemefogot, I moved your intro over here. It wasn't really appropriate in the thread you posted it on. Thanks for your understanding.

========================================
hi this is my first time on a forum. I have Lupus and overlapping mixed connective tissue disease of uncertain entity yet. the rheumatologist can't quite figure me out. lupus Sjogrens fibromyalgia blah blah blah..... I personally think I've had lupus all my life. although it really didn't show its face until I started to try to have children. miscarriage after miscarriage, ectopic pregnancy. fatigue pain endometriosis. finally got pregnant and had a baby in 2001. I brought her home on my 31st birthday. broke out in an incredible rash all over my body after I give birth. OBGYN gave me some long fancy name for it but wasn't quite sure what it was. had a second child in 2006. no rash after second child. I've always been in pain. never paid much attention to it. have always had a high tolerance for pain due to endometriosis. I started having major pain in my tail bone and couldn't sit. worsened when I went to stand. that spiraled everything into the doctor visits. rheumatoid factor has been high for many many years. positive and a double-stranded dna. slightly elevated liver enzymes recently. feeling too well. always waking up with a sore throat and swollen glands. last couple days sore throat really bad back pain and chest pain. having thoughts of the hospital making me feel better. sometimes I wish I could just go get a room there so I could get an IV oxygen and sleep. I'm on plaquinel 400 mg. gabapentin 900 mg to 1200 mg. ultracet and Motrin. was recently told not to take any more Tylenol and to try not to take any alcohol in. Anyone have a weird feeling in their head when they close their eyes like shifting of the eyes hard or movement in the head. a feeling of almost losing your balance or the floor moving underneath your feet but while laying down with your eyes closed. I know it sounds weird... but then again I have an autoimmune disease... thanks for listening. I ramble sometimes.

lupeemefogot
New Member


Date Joined Feb 2015
Total Posts : 8
   Posted 2/10/2015 6:55 PM (GMT -6)   
Lynnwood said...
Welcome,

We have both MCTD and polymyositis folks here as part of the Lupus group. One of your posts was on a thread about another member, you'd get more results on your own threads.

Right now we don't have that many folks who just hang out and chat all day long, but if you have specific issues or questions you'll most likely get responses within 2 days.

Glad you're joining us!



Sorry.... not computer savvy completely. Thanks for moving it. Yeah, unfortunately I don't get to sit around all day here either. I wish though. Looks like there is alot that can be learned here. Thanks for letting me know that there are mctd members or talks. It appears I will be needing it.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/12/2015 11:45 PM (GMT -6)   
I have mctd which includes symptoms of lupus and polymyositis. What questions do you have?

Keep in mind that autoimmune diseases are more of a continuum and that treatment is often similar for many diseases and overlap conditions like mctd.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

lupeemefogot
New Member


Date Joined Feb 2015
Total Posts : 8
   Posted 2/18/2015 8:21 AM (GMT -6)   
BSMIE - thanks for opening the door. My chest pains, muscle weakness and brain fog at the moment have been very overwhelming. I'm concerned things maybe progressing and the Plaquenel is not doing for me what it does for others I read about. Im a 44 year old mother of 2, who's father died in 2009 @ 63 not fully diagnosed. He had so much wrong. I do not want to follow in his footsteps. His father died at 64 of stomach and liver cancer. I worry I may not be as proactive as I can be. CNS Lupus is a concern. My rheumatologist is not proactive in my opinion. He's more of a treat it as it happens guy. I don't care for him and am in the process of looking into the local lupus chapter for my area to see who participates.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 2/18/2015 6:11 PM (GMT -6)   
Sounds like you need to see another doctor who knows how to treat autoimmune diseases. Since you have other issues it might take more than one doctor to address your problems. Plaq is an "entry level" drug and is used primarily to treat mild cases of lupus and other diseases. For more serious cases or if it doesn't work other meds are usually tried. Prednisone works in most cases and quickly but is not a good drug to take long term so others are introduced and prednisone usually tapered. There are many different treatment options to try.

As I am sure you realize, you only have so much energy and need to simplify your life as best you can. If you get effective treatment you could feel much better in time and be able to handle things.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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