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Joined: Jul 2001
Posts: 1,426
Silver_AS_Kicker
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OP
Silver_AS_Kicker
Joined: Jul 2001
Posts: 1,426 |
I don't really deserve any responses, I know, considering that I haven't been here in forever and am just popping in because I am having a really rough time right now. Still, I thought I would ask...
I have been having excruciating fatigue, especially in the afternoons. I also have had memory problems, weakness in the extremities, and other very strange symptoms. I went to a Neurologist, because I feared MS syndrome (which can occur after long term use of Humira). Anyway, the brain MRI and other tests came back negative, but the doctor sent me for a sleep study. Anyway, I have very severe Sleep Apnea. It is so bad that I stop breathing up to 50 times per hour. Also, it was determined that a normal CPAP machine would not work for me, so I was prescribed a BIPAP. I have been on the machine for two weeks now and it is terrible.
Even with my AS being under control from the Humira, I still have a lot of nighttime aches and stiffness. That makes me toss and turn. Now I have the added fun of a mask and breathing tube tether connected to a machine on my night stand. When I move I inevitably break the seal on my mask and it makes horrible noises that wake me. I have tried three different types of masks and each one has its problems. The first one bruised the bridge of my nose so bad that I couldn't even stand to wear my glasses. The second one is a "total face" mask that looks like a hockey mask. It is more comfortable but very easy to dislodge and lose pressure when I turn over. Right now, I am using what is called a "hybrid" mask. It covers my mouth and has prongs that come up and insert directly into my nose. It is the most comfortable, but again, it keeps losing pressure when I turn. Also the prongs tend to really irritate my nostrils.
Does anyone else here have Apnea? If so, how do you deal with a CPAP or BIPAP at night, when it is hard enough to be comfortable because of your AS? They say my Apnea is so severe that BIPAP therapy is a necessity to prevent heart damage or a stroke. Still, I do not see how it is ever going to relieve my fatigue when it keeps me up all night either hurting my face or "farting." Sorry to be graphic, but that is exactly what the sound is like when it loses its seal.
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