I wonder if any of you can understand my fear of falling asleep.
My life has gone downhill since March when I went to the doc with hip pain. After that the pain went to just about every joint and many tendons in my body. The rheumy found that out when he pressed me all over my body. It was torture! The GP thought it was UCTD, but the rheumy I went to has made a preliminary diagnosis of ankylosing spondylitis and psoriatic arthritis.
But it is sleeping and breathing that are my biggest problem now. Most nights I go to bed and can't get off to sleep, and when I do, the pain breaks thru and wakes me up. But over the past 3 weeks, I've also woken up in a panic because of the inability to breath. First it was just that I would feel like I had to force air in and out of my lungs. That was bad enough. But now, I wake up from my sleep gasping for air, my chest hurts, my fingers tingle, and I feel nauseous. The other night it happened twice, and then I was too scared to go back to sleep, for fear it would happen again. I ended up falling asleep in the chair. I can press my chest all over at any time of the day or night, and there is considerable pain.
Is this happening to any of you, and if so, what is it and what do I do about it? It seems to be related to fibro, but no-one has given that diagnosis. If I take sleeping pills I sleep thru it but still feel tired in the morning. But my doc won't let me take any more sleeping pills because they are addictive. What do I do?
Have you ever tried Flexeril? My rheumatologist started me on this at night and it has worked miracles for me as it got rid of muscle spasms and it is best I have felt in years. This is only medication I take except for eye drops. I used to wake up with panic disorder shortly after going to sleep and it was a terrifying experience. Check this out with your rheumatologist as it is worth a try. Good luck. (TT)
As usual TT is on the right track! Flexeril helped me as well. I feel awful for your night troubles. We need all the sleep we can get. Make sure you tell your doctor about the nausea and the tingles you mentioned though too. It could indicate other things like a heart problem or sleep apnea.
Hope you get to resting and breathing better soon.
I know what its like to be afraid to fall alseep, I fall asleep at 6 am. the doc was trying pills on me and it gave me horrid nightmares, also when I was sleeping..taking a sleep pill the pain would wake me up.
now I am back to square one. only taking effexor, and I have been wide awake for the last 3 days, my pain is higher and im exhausted.
I have no idea what to do.. I am the same as i was last august.
so i do know the pain and being afraid to fall asleep.
mine not because of panick attacks, but the sleep meds were awful as far as dreaming,, I was even getting a little paranoid in the day...
i have enough problem with pain and sleep , dont need to be nuts too lol
Rheumatologist told me that it is a common side effect that Elavil which I was prescribed for sleeping could cause nightmares as it puts you into a deep sleep and assured me these side effects would gradually go away. Well, I threw it out. I say the same thing...forget that crap as I refuse to wake up scared to death with heart ready to pound out of my chest and wringing wet. In spite of Flexeril I still only sleep really good about every 7 days, but feel like have a new lease on life with no more nausea and very little cramping. I also had a lot of hip pain as I broke left hip few years back and have 3 screws in hip. I was thinking maybe I really did have a screw loose (referring to my head). In fact I felt so great today that I must have spent 3-4 hours walking in mall. (TT)
I appear to have another little doozy to add today - was having a morning cuppa and all of sudden felt this *****ly burning in my throat and even out my nose! Is this acid reflux? I can't believe something else is going on - what coping mechanisms do you all use? After that incident I decided " to hell with it" and went out and picked fruit, pulled down old banana palms, and generally pretended I was well. One of my kids keeps saying " I hope Mummy is well today". It absolutely breaks my heart.
I also having this breathing trouble. Today I was taking a nap and several times I woke up gasping for air as if I just missed breathing. This is not the first time it has happened. I wonder if I get this in the night too but, I don't realize it because of the sleeping medications (Ambien). The times that I have awakened gasping were when I was not on any medications for sleep. Like when I take a nap during the day. I have written all this down in my daily journal for the Dr's. I will discuss on Tuesday with the new Rheumy Dr.
Just wanted to let you know that I have overcome the sleeping problem. Turns out I was hyperventilating, and there are simple exercises to do to get you breathing properly again. The pain I was experiencing thru the day was making me take short breaths using only the chest. I quickly fixed the problem by breathing with my stomach and diaphragm. No more waking up unable to breathe!
Oh I'm so glad your'e doing better. I have a two year old son and I'm pregnant (33 weeks). I hate it that I'm sick sometimes to the point where I can't be the kind of mommy I want. And when I have to lie in bed for days my son misses play time with me I know.
I have to remind myself to breathe sometimes so I can relate.
Glad to hear you seem to have overcome the sleeping problem. I just wanted to add something to this thread. Have you ever been tested for sleep apnea? I had similar experiences to what you described and about two years ago was diagnosed with sleep apnea. You might ask your doctor about it. Good luck!
Funny you should mention this. I have had joint/muscle pain and weakness for the last few months, including headaches. I too wake up occasionally and think I can't breath or wake out of my sleep struggling to take a breath. The only medication I take along with my entocort for CD, is tylenol 8hr. My condition as yet to be diagnosed because all tests so far come back normal. This is a frightening symptom and I'm surprised so many mention it. Sleep apnea??? I am underweight, so probably not my problem. Could it be that the pain and muscle weakness and exhaustion puts us under undue stress, panic/anxiety, along with not sleeping, we get this symptom, or could it be a muscle spasm of some sort or even medication that relaxes the breathing as well. The last thing we need added to our list of worries.
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Sorry bout the fear and panic you are having. Hope it is getting better since your last post.
You might need to get on antianxiety meds.
How can I help?
I've been through a lot myself.
Not surprised to hear that all your tests are coming back negative, because there aren't any "tests" for fibromyalgia. However, it seems that most of us with FMS have gone through every test known to man before obtaining a diagnosis of FMS. I was diagnosed with FMS 10 years ago, I was also diagnosed with MS a few years after that. So keep on pushing for your doctor to find out what is wrong with you, it is up to you to take charge of your health because most doctors won't. I'm curious that you mentioned being underweight so sleep apnea is probably not your problem, I didn't realize that weight was a precursor for sleep apnea.
Painsucks, thanks for your reply. I've had so many tests this year and hopefully won't need too many more before there is an answer for this.
I don't know too much about sleep apnea, but when I thought I had it, I looked it up and found more than one article saying almost all people with sleep apnea have a weight problem. Of course there has to be a few that have other problems that contribute as well, regardless of weight. Their theory being that fat deposits (particularly in men) are at the base of the tongue. This extra fatty tissue blocks an already clogged air passage, making nighttime breathing more difficult.
Note: not all over weight people have sleep apnea.
If you're interested, I'm sure the internet has plenty of information on this subject.
I think with me, when I'm anxious I stated to subconciously hold my breath to slow my breathing down so I don't hyperventilate. I caught myself doing this in bed as well. Bad habit because when I'm asleep I have no way of knowing when to breathe until I wake up gasping for air..
Sometimes aspirin type meds can cause an irregular heart beat. I used to wake up gasping for breath and often afraid to sleep. Whatever the cause, it would seem I was experiencing vascular spasms which would partially cut off the full supply of oxygen. My chest felt like there was an elephant sitting on it. There is a heart medication that has a dual use for high blood pressure and also for vascular spasms. The only time I ever notice anything even mild is when I get into the caffeine. Even though I normally have normal to low BP, the Norvasc has not caused me any problems. In fact, it even keeps my BP raised into the normal range a lot more often. Most docs don't seem to be aware that it is used for anything besieds high BP.