Difficulty breathing... Need answers

For several months now I have been having a difficult time breathing especially durning the evening. I have spoken to my primary doctor and a Lupus specialist. No one can seem to come up with a reason why it is happening or a way to prevent it. At first they thought it was asthma so they gave me an inhaler. Then they thought it was anxiety so they prescribed an anti anxiety medicine. None of these helped. I feel that it may be connected to my lupus but I don't know what to do about it or what is causing it.
When I begin to have this 'attack' it feels like a mild anxiety attack. Almost as though something has filled my lungs and I can't take a deep breath. Has anyone experienced similar symptoms? I could really use some answers!

Hi!

I live in upstate ny near Buffalo. We had a few days with an air quality advisory from humidity and particulate levels where I was definately asthmatic. The past month has been tough on me breathing wise, too. Have asthma, and was tested by my rheumy for every allergy he could think of.... boy was he surprised I didn't have ANY! But.... here's the kicker... I AM NOT asthmatic, and boy do I know!!! I can move air, and am not wheezing and my albuterol and Advair inhalers, (was switched from Flovent to Advair on emergency md visit May 23rd), do not help. For over a month, I kept waking up in a panic trying to consciously tell myself to move my chest to take a breath, like I had lost the instinct to breathe without thinking about it. Well, now I am going back to neurologist on the 12th, because, low and behold.... my reflexes were gone, absent, not found, inspite of repeated whacking on my elbows, wrists and knees. Hmmnnnn, reminds me of a nursery school song, I am also having unusually bad joint pain now, and after 5 nights of using albuterol q2 and taking an extra 5mg of prednisone last week,  I am no longer panicked with dyspnea. I came close to going to the ED in the middle of one especially scary night. Since the difficulty breathing followed my usual loopie pattern of getting bad, badder, worser then better, I am certain it is connected to the inflammation of my lupus,  and that now my nerves are screaming less and my joint pain is pretty bad, bet you a nickel the neuro will tell me my reflexes are fine. Go figure. My doc gave me a prn prednisone script, and a prn ultracet script. I have been desperate enough to make myself believe the ultracet takes the edge off the pain, (he also said my bad hip had bursitis in it and laughed when I told him to go ahead and keep poking it!!)  And, I had to remind my drs. that when I am really, really, TOO SICK, I stay home because I am TOO SICK to go out to the dr.

hugs,

suetoo

You don't by any chance have sleep apnea? Have you been tested for it?
It's something to think about...

My pulmonologist told me that sleep apnea often happens to people with thyroid problems. I have thyroid problems and was told four months later that I had sleep apnea also.

I use a CPAP machine.
Before I was told I had sleep apnea I was walking around in a daze. I felt so exhausted. I was snoring, waking up all during the night. I'd sleep 12hrs and still didn't feel rested.
I went to a sleep study and found out I would stop breathing every 2 minutes and wake up to start breathing again. The doctor said if I hadn't started the CPAP I would of put so much stress on my heart I would of wound up with a heart attack. I do have some enlargement on my left ventrical side of my heart due to this.

My Husband has Lupus and has a hard time breathing when he is tired or has/fighting Pneumonia.Pulmonary Dr says it because his lungs were damaged when he got H1N1 18 months ago...

 Hello everyone, this is the first time I have posted anything but this last illness hurts so bad and will not go away.  I have experienced the same thing as just about all of you, some say Fibro and everyone just seems to be afraid to say lupus.  On this last episode I flew to Seattle from Texas to visit my mom for 2 weeks.  As we took off from the airport I suddenly had a sharp pain in my chest that took my breath away.  During the time in Seattle I kept getting worse and worse.  The tight band under my breasts and painful breathing in or moving about.  I went to the ER in Seattle and after a CT Scan and Xray they just said I have COPD.  The pain was still so bad especially at night and in the morning that when I got home I saw my doctor and he thought it was pleurisy.  All this started on August 14th.  The pain is unbearable so I take Hydrocodeine.  It will help a little for about 3 hours then the pain comes back with a vengence.  My doctor put me on 20 mg predisone for 10 days and it may have improved a little but the side effects of the predisone were horrific.  I cannot take a deep breath without the stabbing pain in my chest and it is on both sides.  My doctor just doesn't know what to do.  During the weekend I went to a clinic and they told me they think I have chest wall pain, with a slight about of fluid in my lungs.  He put me on an antibiotic and said all I can do is treat the symptoms.  I am so exhausted that I cannot seem to get out of bed and at night and in the mornings I can barely move because of the pain.  Has anyone had these problems with lupus? My ANA is 1:160, homogeneous and the ds strand test has tripled in the past 2 months, but still not real dx of lupus.  I have been so sick for so many years and I feel like the life is being sucked out of me. So frustrating going to doctors and my luck has not been good with them.  I cannot believe the doctors are so cruel and non compassionate and believe me I have been called crazy many times.  If I am it is because they are making me that way and this relentless pain is driving me crazy.  I would love to hear if anyone else has had these symptoms.  I am also running a low grade fever and feel like my body has been hit by a truck.  Thank you for listening.....   and hugs for everyone that is having a bad day... Patty

I agree with Lynnwood. Find a good pulmonologist.