Posted , 4 users are following.
Hello my sarc brothers and sisters,
I had a sleep study done a couple days ago and I have sleep apnea and Restless leg syndrome. The doctor said it looked like I was running a marathon all night. No wonder I feel like crap when I wake up, I am always tired and run down. Anyone else? Thanks for listening...
1 like, 10 replies
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tangles terry57082
Posted
Yes, I have sleep apnea and leg movements when asleep.
Now on a cpap machine and it has improved my sleep but not solved all of my sleep problems.
Tangles
terry57082 tangles
Posted
Thank you tangles, I think I am headed in that direction. The feeling that I have to move all the time at night drives me crazy. I never reach REM sleep. I wish you well 🙏
frustrated61 terry57082
Posted
Hi Terry ~
I'm sorry to hear you have sarcoid...I a little confused, since the sleep study, does the sleep apnea negate sarcoid?
I have had 11 sleep studies over a 10 yr period. All of which said, no apnea. However, the last study showed it was like I was being tapped on the shoulder every 10 mins. And, yes, that's why I would almost fall asleep at a red light...any other places. I used to fall asleep in the middle of a conversation with my adult kids.
My sarcoid is 'rawring' at this time. I was in the hospital last year and more spots were detected in the upper left lobe...feels like someone is sitting on me. while in the hosp, they did a sleep study (again) and they said I need oxygen at night or throughout the day when needed...but every night. I asked if I had sleep apnea and he said no, this was caused by the sarcoid. I'm still wondering about that.
And, yes, always feel like someone sucked the air out of me...run down. Waking up is so hard for me...takes me a few hours to be able to move. I have Sjorgens as well as a new hip (last year) and many surgeries, fusing my spine and neck because of an auto accident...that is another reason it takes me a while to get up.
Do you ever get the feeling of vertigo and loose your balance? I'm doing that and I'm doing it so much, my husband won't let me walk down the stairs unless he's in front of me...he is a wonderful hubby.
Anyway, I was wondering if anyone with sarcoidosis is symptomatic to vertigo or loss of balance?
I wish you well, Terry and yw for listening...that's why we are all here :D
Warm regards,
Frustrated
terry57082 frustrated61
Posted
Hello frustrated 61,
Yes I gave vertigo...no fun. No the sleep apnea is just another thing to add to the list of possible symptoms that can go along with sarcoidosis. Today my bones hurt so bad...nothing helps. It's like a really bad toothache inside your bones. I am so glad you have a good spouse to take care of you, that is very important. Best wishes to you. 🙏 Praying for a cure.
tangles terry57082
Posted
I purchased a new cpap resmed 10 elite in may and to my surprise it was so quite it was a real joy to both myself and my wife.
The low noise improves both my sleep and my wife does not have to put up with snoring or the noise of the old machine.
Still do not know what to do with the leg movements. I have no idea what to do with them?
Regards
Tangles
terry57082 tangles
Posted
tangles,
I think a cpap is where I am headed now. The RLS, I don't know yet, but I will let you know what they say to do about it and if it works or not.
My best to you,
Terry
marie82928 terry57082
Posted
Hello. Yes, I am tired all of the time as well. My husbands says I snore and its pretty loud. Never had a sleep study. I'm just trying to get stabilized with my sarc. I went to a different GP today, as I felt like I had an infection. He is doing some blood work and will let me know. He gave me a great education on what prednisone actually does to your adrenaline glands, pitutary glands, hormones, etc. No wonder it makes me feel so bad. Good luck to you marathon person!!
terry57082 marie82928
Posted
Hi Marie,
Yes, my husband says the same thing. I think the cpap is the next step they will try on me. This flare has been bad. I don't even look like myself. Do you ever think that? I look in the mirror and I see a haggered older person with no sparkle in my eyes like I used to have. I have always been independent and now I can hardly do the normal every day chores. What also really gets me is that my husbands friends think I have become lazy and that he could have done better. That really hurts and makes me want to lash back at them, but I have to pull myself back and try and look at it from a different persepective. At the time one of them actually said that in front of me when a bunch of them were over at our house, and I was ready to pull her over the counter and beat the crap out of her. God forgive me. I have always been the person in the family that does all the maintenance on everything, appliances, cars, yard work, etc. Now, I can't do it, I hate it!!!! I find myself praying that God will just take me from this earth and end this. Sorry, this ended up being a rant on my part.
God bless
marie82928 terry57082
Posted
Terry, Terry Terry! Of course we all go through this kind of stuff. Yes, I look in the mirror and my eyes look like those of a sick person. I put on makeup and look better! Hey my husband is 5 years younger than myself. I need to try and look my best. I was always very active too. It will happen again. I won't give up. You shouldnt either. Let's both pray that God gives us the strength to get through this and regain our health!
\
Best regards, Marie
tangles terry57082
Posted
Have ever thought of sitting down and drawing up so notes about sarcoid and the effects it has on the body. Then sperate notes on the effect of steriods on the end users.
Make plenty of copies then invite all the friends and family over for a cup of tea and give each a copy as you serve tea insisting that they have to read it whilst you are still in the room.
If they are better educated on the illness they will instead be supporting with your battle.
KEEP UP THE GOOD FIGHT
Regards
Tangles