fibromyalgia and sleep apnea

I saw a posting from YUBYUB regarding this subject. The subject was sleep apnea, muscle twitching, cramps and fibromyalgia...
My apnea apparently has gone on for a long time In the interim, my symptoms have included muscle twitching, muscle cramping, headaches, dizziness, wheezing, coughing, brain fog, anxiety, confusion, shortness of breath on and off all day and evening...also upon awakening, falling asleep at red lights, falling asleep anywhere at anytime, insomnia, restless leg syndrome, muscle weakness, falling, pressure on my chest, chest pain, teeth pain, fractures from grinding at night, blurred vision, muscle weakness in my eyes. extensive dry eyes, chronic conjunctivitis, increase in urination at night, pain in muscles, pain in joints shooting pains in my jaw and in my head, back and forth with nausea and loss of appetite to increased appetite, increased weight gain at record speeds even when dieting, thyroid levels going from increased to normal with no treatment, increased hair loss, inability to walk some days as my gait is wobbly and my knees give out, my voice has been affected and I am a singer, I can't remember words to songs as I worship in church, I am wheezing one minute and clear the next, and my fatigue? I can't even tell you how bad that has been. My quality of life has taken a temporary backseat. My family thinks its all in my head.
I have seen a neurologist who immediately ruled out myasthenia gravis because of the increased muscle weakness and blurred vision and decreased muscle ability in my eyes. I had nerve conduction study...negative. I had CTS, MRIS, Cardiac testing, Cardiac catheterization where my O2 sats plummeted to 63 and they blamed my request for medication, Pulmonary testing showed lack of ability to exchange O2 and CO2 properly, diagnosis asthma and only because of symptoms and what they heard. No proof in the testing. Meanwhile on medications like Breo for asthma, zoponex for rescue inhaler, prednisone and solu medrol and ER visits with shortness of breath, heart meds, pain meds, sleep meds, OH MY. I kept saying to myself we are missing something here . I was a healthy vibrant woman into my late fifties. I was in Fiddler on the Rood musical in my late fifties. Singing, dancing, and now I'm concerned about falling walking over grass that is uneven, and I turn and get dizzy. What is going on? I have told multiple doctors that I don't sleep well and I gasp for air , wake myself up, and don't feel rested ever. Red flag. But no one listened. I got sleeping pills of which I choose not to take. Glad I didn't . I guess Ambien is dangerous to take with sleep apnea. Go with your gut people. I did and I am glad. I just recently went by ambulance from my apt to the ER as I had chest pain and counldnt breath. They thought cardiac and did the cardiac testing and cardiac cath. A pulmonologist was called in as a consult, but stepped back after cardiac was the front runner. However they did say I must follow up with him following the discharge. Sent me home with a script for a cardiac med that I didn't need because they found nothing and the cath was negative. Be careful people, and as why they are putting you on a new med. If their answer is just as a precaution after your tests were negative? Rethink taking them, or ask your primary if you need these new meds. If he is a good Dr he will tell you. My primary asked why did they put you on this? You are not cardiac everything was negative. Yup. So sleep study came. YUP I have sleep apnea according to all the tests . As I did research on sleep apnea from reputable sites like the Mayo Clinic and Jacksonville Florida sleep study clinics, I found that ALL of my symptoms ca be caused by untreated sleep apnea. This has been going on for quite awhile and no Dr listened up until now. I could have felt better a long time ago. But from now on....I went in to be hooked up to CPAP, and when I woke UP? I felt like I was in a brand new body. Chest pains gone, shortness of breath gone, weakness in my legs gone, muscle cramping gone, pain in my hands and feet gone........on an on......gone. I went shopping all day for the first time in a long time. i didn't go home until late. It was an immediate change . I hope this helps someone. I encourage you to be patient and cautious as Drs will rule out many many things first. But I am looking forward to a new beginning of energy, health and the ability to sing and to dance again!

singsingsing wrote:I went in to be hooked up to CPAP, and when I woke UP? I felt like I was in a brand new body. Chest pains gone, shortness of breath gone, weakness in my legs gone, muscle cramping gone, pain in my hands and feet gone........on an on......gone. I went shopping all day for the first time in a long time. i didn't go home until late. It was an immediate change .

Good for you! And thanks for a testimonial that FM sufferers surfing the web may find. I have read that 70% of FM patients have sleep apnea. Maybe that was all that was wrong with them? They were just misdiagnosed.

I have a dear neighbor who suffers with FM. I asked, and she told me she doesn't have sleep apnea. But, one day her husband told me a grandson was staying with them. The grandson was sleeping in a crib right beside my friend's bed. The husband wondered how the kid could sleep with my friend's loud snoring all night long. Aha! She most likely has sleep apnea. I talked to her again, but she doesn't want to deal with a sleep study and CPAP. That's sad, but it is her choice not mine.

I get the general gist of your post is that you tried CPAP and it was really helpful which is great, but may I gently suggest you go back and edit your post to break up your thoughts into more paragraphs??

I'm not trying to be rude at all, but it's very difficult to read a "run on" paragraph, and if you want to get the message across to fellow FM sufferers who happen upon it, your message would be a lot more clear if it's more legible.

I could not read the whole thing either.
You have some very good points, though, and I am looking forward to reading it all.
I know a couple of FM patients who need to use their cpaps, but do not.

You posted: I was a healthy vibrant woman into my late fifties. I was in Fiddler on the Rood musical in my late fifties. Singing, dancing, and now I'm concerned about falling walking over grass that is uneven, and I turn and get dizzy. What is going on?

Reply:

I am ready to take a guess that you suffer from Diabetic Peripheral Neuropathy which has no cure, but taking Neurontin could help somewhat. Use these shoes:

https://www.swimoutlet.com/p/body-glove ... hgodO6cGRg

I would get a referral from a physician and do physical therapy (vestibular) to be paid by Medicare.

Sleep Apnea belongs here because it all indicate a collapse of the vestibular system.

wrote: I gently suggest you go back and edit your post to break up your thoughts into more paragraphs??

Unregistered Guest. Would need to start a new post.

Poor Avi!
What a sad situation.
Your "diagnosis" is much more bleak than the OP discovered.
I'm glad you are not my doctor. Or anybody else's.

chunkyfrog wrote:Poor Avi!
If only everything were as simple as you think.

chalas (in Arabic)

avi123 wrote:You posted: I was a healthy vibrant woman into my late fifties. I was in Fiddler on the Rood musical in my late fifties. Singing, dancing, and now I'm concerned about falling walking over grass that is uneven, and I turn and get dizzy. What is going on?

Reply:

I am ready to take a guess that you suffer from Diabetic Peripheral Neuropathy which has no cure, but taking Neurontin could help somewhat. Use these shoes:

https://www.swimoutlet.com/p/body-glove ... hgodO6cGRg

I would get a referral from a physician and do physical therapy (vestibular) to be paid by Medicare.

Oh, for goodness sake. That was before CPAP. Let her use the new-found treatment.

Avi, hmmm.
Tsk, tsk, tsk.

I just wanted to say that I also had a lot of weird symptoms, like acid reflux, headaches, cold symptoms, muscle and joint pain.

Nights that I do well with my therapy and don't have bad insomnia, I feel very well the next day.

I still have bad days, that follow bad nights. Maybe 1 or 2 times per week. When I have the really bad insomnia, I can't get to sleep for hours and hours, up and down. Finally take low dose Ambien as a last resort. But when I finally fall asleep, I am so exhausted that I tend to smash my face into the pillow and roll around on my hose (even with a hose hanger). I get a lot of leaks.

On a good night, I fall asleep within an hour, have few leaks, and wake up feeling refreshed.

I received a Fibro diagnosis once, but that was because the doctor could not figure out what was wrong with me. And, my husband, a retired physician, does not believe Fibro is a real disease. He thinks it is just a bunch of symptoms that are often unrelated. After my experience with CPAP and feeling so much better, he is really sold on CPAP.

I have several friends who have Fibro. 2 of them have been diagnosed on sleep studies with sleep apnea, but will not use CPAP. I think they are making a big mistake.

So I can relate to what the poster is saying about a lot of symptoms with no apparent cause responding to CPAP. It happened to me too and CPAP has massively improved the quality of my life. I do still have to address the insomnia.

PEF wrote:my husband, a retired physician, does not believe Fibro is a real disease. He thinks it is just a bunch of symptoms that are often unrelated.

The AMA agrees with your husband:

Diagnosis criteria for FM: The patient does not have a disorder that would otherwise explain the pain.

http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

Thanks for the link, CG, very interesting!