Lupus and sleep apnea??

 I hope that you all have a good weekend!! Happy Easter and Happy Passover to everyone! I've been switched from neurontin to lyrica for pain relief. I'm going through some side effects, but I've seen a slight improvement with some lupus symptoms. I'm also seeing an improvement in my back pain using a tens unit everyday. I see a PT everyweek and that's helping. I'm still very tired though. Tomorrow I pick up my CPAP unit to correct my breathing problems(snoring :)). Actually, I have a serious night breathing problem...over 200 breathing "incidents" and I stopped breathing all together 8 times. My legs moving got myself breathing again. That is really scary for me. Does anyone have a CPAP machine and does it work for you? Has anyone had the corrective surgury done? Take care everyone, ((((gentle hugs and prayers))), blessings, Cecelia

Hi Sue, My hemo/oncol. told me to have the sleep test done. My PCP set it for me. I went to the hospital at 9:00pm and they put me in one of their sleep study rooms for the night. It was a very comfortable room done in blues and it even had a real bed with blue sheets and comforter. It had very soft lighting. All of the equipment was behind the bed's headboard and all of the computers and monitoring t.v.'s and the techs were in the next room. I was told to bring my own pillow and p.j.'s. The techs put electrodes on my legs, heart area, eye area, and over my head in various places. Two straps were wrapped around my torso. They didn't bother me at all. I thought I slept pretty well, but I was told that I had over 200 sleeping incidents (not breathing for 10 secs) and 8 times I completely stopped breathing altogether. They said my legs started moving to make my body breathe again. It was very scary to hear about.

I went for a second sleep test, this time with the CPAP machine. I had all of the same electrodes and monitoring straps. They fitted me with a face mask the looks like the kind that fighter pilots wear and attached me to the CPAP machine. The machine pulls air in from the air around you. It pushes air into your airways to keep the soft palette open and obstruction. That is why I have to have one. It's the most common problem where people have to have a CPAP. I didn't need additional oxygen, so no Ox tank for me. The CPAP machine that I'm getting tomorrow will have a humidifier and air temp. control. I think I slept well that night with the CPAP even though the techs were comming in the room to adjust the mask and air pressure. I am told that there is a short adjustment period to sleeping with a mask on and the air sound. I am also told that once you get used to the machine, you never want to sleep without it. Also I was told that it will take away alot of fatique, mental fogginess and I'll have more energy. My obstruction is so bad that I have been referred to an ears, nose and throat specialist/surgeon to see if I can have my obstruction surgically removed....that would be some of the soft pallet and tonsills. That I've been told is painful to recover from. Sometimes it improves breathing, but you still need the CPAP. I've been told that some people are glad to have had the operation, some wish they never had it done. So I'll see what the specialist has to say and decide.

I hope this information has been of help to some. It is a very common problem that is often over-looked by dr.'s, my own PCP said that. It is is easily compensated for by using a CPAP machine. It's main reason for failure is that people don't want to sleep with the mask on. There are different kinds of masks to try.....you can be fitted with one that works for you and you might have to try a few. If you think that you might have sleep apnea, talk to your PCP about it. I was told that there was a connection(my rhuemie) between fibromylagia and sleep apnea and auto-immune diseases like lupus and R.A. If anyone else has something to share about this, I would really be interested in what you have to say. I'll keep you all posted step by step on this. All I can say is "who knew?" If this machine can make me feel better during the day, then why not?

Peace be with you and blessings, Cecelia

Hi Cecelia:

I saw your post and wanted to respond. I have mild sleep apena and I was prescribed a CPAP machine. I have to say that I hate my machine and I only used it for the first four weeks. It now just sits on the night stand next to the bed and collects dust. I'm a stomach sleeper and it's next to impossible to sleep on your stomach and wear the CPAP mask. The pulmonary doc told me I had to sleep on my back, and I said sorry no can do doc. He did say as long as I'm sleeping on my stomach I shouldn't have any sleep episodes. It's only when I roll over on my back or side that I do. I faithfully tried for four weeks and didn't feel the least bit better.

I hope that you have more success with your machine. Ours are identicial, I even got a different face mask. I'm sending positive vibes and prayers your way that you do great with yours. I hope things are doing well for you and the family. You're in my thoughts always and know I'm praying for you.

Love,

Barbara

Hi Cecelia:

I hope your CPAP machine works great for you sweetie. How is Michael doing? How are you feeling these days? As for me I'm a bit improved, I think my anitibiotics have finally worked at clearing up the bowel infection. I'm still not eating though. I just don't want food at all. I've had no home care yet, the social worker is trying to work something out that I can have IV fluids twice a week at home. However, there may be a cost to us and our insurance may not cover it all, so it may not happen. I manage one 24 oz bottle of gatoraid a day down and that's about it, which I know isn't enough fluids for an entire 24 hour peroid. My family is doing alright, Nikita is off from school for Easter break now. Bill is busy getting ready to make a major career change after 21 yrs.

Hope things are going well for you and your family. Good luck with your CPAP machine. Make sure you get plenty of rest and nesting time. You're in my prayers always.

Love,
Barbara

Hi Cecelia,
I was diagnosed with sleep apnea about a year and a half ago and have been sleeping with a c-pap ever since. It did take a while to get used to it but if you will stick with it I think you will feel so much better. After a few weeks I was not as tired and fatigued and was sleeping all the way through the night most nights. My family says that my mood got better as well. It goes everywhere I go, traveling, camping, wherever. I never sleep without it anymore. I don't use a full face mask, I use the nasal pillows which work for me. Good luck and let me know how you do.

Hi,

I have Lupus and Sleep Apnea.  I was prescribed a CPAP machine and used it for almost a year.  When I went back for my yearly sleep study my apnea was worse than before.  I stopped breathing every 5 minutes.  I chose to have a UPPP for my sleep apnea.  It was very painful and I wouldn't recommend it.  I knew the risks going into the surgery but thought it was my only thing that would help me get some rest.  (At the time of my surgery I hadn't been diagnosed with Lupus).  I go back in a few months for another sleep study and I am sure they will put me back on the CPAP. I personally hate the CPAP.  I am hoping to get a BIPAP instead.  My previous insurance wouldn't cover the BIPAP. I had more than one sleep study before my dr prescribed a machine - once with a CPAP once with a BIPAP and my results were much better with the BIPAP.

Good Luck!

T-

I still don't like my CPAP, and I cant' get anyone to look at it or me. It's frustrating. It seems like the company had time to sell it to me but now they don't want to answer any question. They said maybe they'll have someone call me next week. They wanted me to go in on seconds notice yesterday, but I didn't have anyone to sit with Michael. I think that one of my letters is in order to the President of this company........

The latest thing is that I have an appt. with a head and neck plastic surgeon at the end of the month. That might be the best option for me...and to have a deviated septum corrected too. Now to worry about insurance.

Thank you everybody! love, Cecelia

Hi Ceclia:

I'm sry to hear that you don't like your CPAP machine. Can you tell me what you don't like about it? I'm surprised the medical supply place that provided you with your machine, hasn't called you. The medical supply place, calls me every 3 weeks, to see how often I'm using the machine, how many hours I use it. When they found out I wasn't using it at all, they contacted my insurance company and got me a different mask. This one isn't anything like the two masks I tried and wore in my second sleep study. I'm a bit better with the new mask, but I'm still not sure if I can use it and like it.

I'm wishing you the best, and you're in my prayers daily. Hope all is well at home with Michael . I know Nikita is getting antsy about school and summer vacation coming up. You do what you need to do to feel better. Please keep us updated on how things are doing. (((((((((gentle hugs))))))))))))

Love,
Barb