Lupus and sleep apnea??

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Peaceful Harpist
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Date Joined Apr 2005
Total Posts : 679
   Posted 4/4/2007 6:39 AM (GMT -7)   
 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
Rest well, Nesting is healing, Live well, blessings, peaceful harpist 
 
Lupus(SLE & Sub-Cutaneous),chronic pain,degenerative disc disease,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's,Rosecia,vit. D and iron deficiency.Medications:Plaquenil 400mg. day,Tramadol 100mgs 2-3 day,Lyrica 300mgs day,effexor 225mg day, Ativan 1mg 1-3day,Prevacid 30mg day,Metroprol 25mg day,Levothyroxine 50mg day,Mobic 15mg day,Hydrocodone 500mg as needed,robaxin 500mg as needed, 4hrs,Azelex Cream 2xday,tretinoin cream 1xday,vit.D supplements,iron/dextran infusions as needed,sun screen,TENS unit,CPAP unit. New dx:fibromyalgia & sleep apnea. Yoga...Meditation... Music
  
                     
 


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 4/4/2007 8:36 AM (GMT -7)   
Hi Cecelia,

I am interested in hearing how the CPAP machine works for you (and hope others chime in). Did you go to a sleep clinic to find out about the breathing "incidents"? How did that work? Did your PCP refer you or your Rhuemy? Last visit my Rhuemy seemed to just dismiss my sleeping problems as it was not pain waking me up (in sort of a "not my problem" way that annoyed me). Anyway, I typically wake up every few hours and feel this contributes to my exhaustion. My boyfriend says I stop breathing and twitch myself awake. I've been caught up in trying to figure out my AI problems so have just gone for years not sleeping well.

Glad that you have seen improvement. Have a Happy weekend. Thanks for this post.

Stay Strong,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (10mg and getting off)


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 4/4/2007 12:49 PM (GMT -7)   
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
Nesting is healing, Live well, blessings, peaceful harpist 
 
Lupus(SLE & Sub-Cutaneous),chronic pain,degenerative disc disease,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's,Rosecia,vit. D and iron deficiencys,fibromyalgia & sleep apnea.Too many meds to mention. Yoga...Meditation... Music
  
                     
 


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 4/4/2007 5:17 PM (GMT -7)   
Cecelia,

Thanks very much for the information. I think I will investigate getting a referal for a sleep test. Good Luck.

Sleep tight,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (10mg and getting off)


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/4/2007 6:37 PM (GMT -7)   
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
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 4/5/2007 5:23 AM (GMT -7)   
Hi Barbara, It's so good to hear from you! I'm sorry that your CPAP didn't work for you. I hope that mine works for me. I hope that you are feeling stronger and getting rest. Have you gotten home care yet? How is your family? Have you gotten more fluids yet? Do you have an appetite? Please know that you and your family are always in my prayers and thoughts. ((((((gentle hugs))))). love, Cecelia
Nesting is healing, Live well, blessings, peaceful harpist 
 
Lupus(SLE & Sub-Cutaneous),chronic pain,degenerative disc disease,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's,Rosecia,vit. D and iron deficiencys,fibromyalgia & sleep apnea.Too many meds to mention. Yoga...Meditation... Music
  
                     
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/5/2007 6:25 PM (GMT -7)   
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
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/5/2007 7:11 PM (GMT -7)   

Hi Cecelia,

  I'm glad you are seeing improvement with the lupus symptoms, back pain and the PT is helping. Hopefully, the fatigue will improve soon as well...((Hugs)).

  I had a sleep study done last year to prove to a neuro I didn't have Narcolepsy. I was having seizures and he said it was Narcolepsy. Thank goodness it wasn't, although, the seizures were bad enough. I didn't have any sleep problems that they could find. I just have a problem with either not sleeping or sleeping too much. It goes in cycles. I'm in the no sleep cycle now.. redface .

  I hope the C-Pap Machine works well for you and you will get a better quality sleep with it and feel well rested. Let us know how it works out. Take care, keep resting and nesting! You are in my thoughts and prayers.

                                                     ((Hugs)) Babs

  HAPPY EASTER!!!!!!!


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Post Edited (mom46) : 4/5/2007 8:14:49 PM (GMT-6)


bamagal
Regular Member


Date Joined Jul 2006
Total Posts : 150
   Posted 4/6/2007 2:33 PM (GMT -7)   
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.
UCTD, Hypertension
Meds:  Plaquenil, Naproxen, Hyzaar, Cymbalta, multi-vitamin
 
For I know the thoughts that I think towards you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.  (Jer. 29:11)
 
 


Sergeant Bob
Regular Member


Date Joined Aug 2006
Total Posts : 46
   Posted 4/6/2007 7:10 PM (GMT -7)   
Ah! CPAP! I have been on CPAP for 2 years now and I would not and can not sleep without it. I love it!
You really should get educated about them, just like you do for any other disease or medication. There are a couple really good forums which I will PM you if you wish.

You will find that those people probably know more about living with CPAP than most doctors. Sure, they can tell you technical stuff but, unless they use one themselves they likely won't know how to make it work for the individual.

Did your doctor go into detail about the hazards of OSA? Its a lot more than just stopping breathing once in a while.
Every time your airway collapses, your body goes into "Fight or Flight" mode. Have you ever had a really big scare that leaves your heart pounding, such as in almost falling from a great height?
Well, thats what happens to your body every time you have an apnea. Your heart races, your blood pressure goes up, your blood sugar skyrockets, your adrenaline pumps, your O2 saturation plummets (anything below 88% actually causes damage to your body). It can lead to permanent changes in all of those.

That fight or flight mode is great when you are faced with danger and you need an extra boost to save yourself or someone else (you've heard of mothers picking up cars off their children, thats how they did it) but, its awfully hard on your body when it happens several times an hour. Even when they aren't that severe, it still keeps you from getting the proper sleep you need.

I used to wake up and the bed would just be soaked with sweat. My O2 would go down to 60%. I would wake 3 or 4 times a night to go to the bathroom. It would take me an hour just to wake up in the morning. I could go to sleep any time during the day. I always got sleepy when I was driving, reading or watching TV.

Now I sleep 8 or 9 hours without having to get up and I'm no longer sleepy during the day. My blood pressure has dropped about 10 points. I know a woman who has diabetes and has had a lot of problems. She used to get tired just walking to the bathroom. She is on CPAP now and she has more energy than she's had in years.

Sometimes the change is immediate. Sometimes its not so quick but, there will be change. A doctor should not force you to sleep on your back if thats something you never do. However, I can now sleep on my back and was not able to do that before CPAP.

Learn about machines and masks, and don't let a DME (Durable Medical Equipment) provider force something on you which you do not want. Most of them don't really know that much about using the equipment. They are just sales people and will usually push what makes the most profit.

When you get a mask, try it out for a while and if it won't work for you, return it and try something else. There are a ton of different masks out there and each one works different for different people. Just don't give up. If you can make it work, you will wonder how you ever made it through life without it.

Sorry to be so long winded but, this is something I consider very important.
Each day is a gift, make every one count.


bigdogmama
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 4/8/2007 6:07 PM (GMT -7)   

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-


Sergeant Bob
Regular Member


Date Joined Aug 2006
Total Posts : 46
   Posted 4/8/2007 7:47 PM (GMT -7)   
bigdogmama said...
Hi,
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-

If you can, buy your Bipap online. There are some reputable vendors out there who will process your insurance for you. When you buy a XPAP from a vendor (as opposed to CareLinc, etc) the product code for insurance is the same no matter what machine you buy.

I don't know why some insurance companies insist on going through brick and mortar suppliers who end up charging over twice as much as the machines are worth.
Each day is a gift, make every one count.


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 4/14/2007 7:01 PM (GMT -7)   
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
Nesting is healing, Live well in Peace, May God bless you, peaceful harpist
 
Lupus,chronicpain, pain,degenerative disc disease,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's,Rosecia,vit. D and iron deficiencys,fibromyalgia & sleep apnea.Too many meds to mention. Yoga...Meditation... Music...Laugh!
 
  " What matters in life is not great deeds, but great love." 
  -St. Therese de Lisieux, France                  
 


Sergeant Bob
Regular Member


Date Joined Aug 2006
Total Posts : 46
   Posted 4/14/2007 8:30 PM (GMT -7)   
Harpist, those people probably don't even know enough about CPAP to help you. All they will likely do is try to sell you something else. Why don't you go to cpaptalk and have a look around.

Take charge of your treatment.
Each day is a gift, make every one count.


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/14/2007 9:12 PM (GMT -7)   
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
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

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