Anyone else with fibromyalgia?

Country4ever · Post by **Country4ever** » Thu Jan 10, 2008 10:08 am

Hi all,
Sometimes its hard for me to assess the goodness of using CPAP since I also have fibromyalgia......which means alpha wave intrusion. I suppose I could find out if using CPAP helps with that, but I refuse to have another sleep study. Its difficult to assess, since I might be waking up alot due to the alpha wave intrusion, as opposed to something related to the CPAP use. My sleep study several years ago showed alpha wave intrustion, plus in the entire night of sleep there, I had no REM sleep. I did take 1 mg of xanax there, so I don't know how much that affected things.
Just curious with those of you with fibromyalgia, if using CPAP took care of most of your sleep issues? How did your energy level do after using CPAP for awhile? I definitely think I have more energy. But who knows for sure.........I go through so many different cycles, its hard to know what helps what. Just when I think it helps, I go through a horribly tired cycle and then I'm not sure if the CPAP was really helping or not.

Guest · Post by **Guest** » Thu Jan 10, 2008 10:17 am

how is fibromyalgia diagnosed?

Wulfman · Post by **Wulfman** » Thu Jan 10, 2008 10:32 am

Anonymous wrote:how is fibromyalgia diagnosed?

LOTS of information on the Internet:

http://en.wikipedia.org/wiki/Fibromyalgia

http://www.mayoclinic.com/health/fibromyalgia/DS00079

http://www.fmnetnews.com/basics-symptoms.php

http://0-www.nlm.nih.gov.catalog.llu.ed ... algia.html

http://www.fmaware.org/site/PageServer

http://www.fibromyalgia.com/

And that was just a few of the sites that came up on a search.

Den

Country4ever · Post by **Country4ever** » Thu Jan 10, 2008 11:29 am

Unfortunately, FMS (fibromyalgia syndrome) is a diagnosis of exclusion. That means that you rule out all the other diseases that actually can be tested for........i.e. M.S., celiac disease, Lyme disease, etc.. If a person has all the symptoms, but is negative in alot of these other tests, then they may have FMS.
I think it is a set of symptoms that could possibly be from different causes, but seems to lead to the same symptoms...........extreme fatigue, pain, cognitive problems, irritable bowel syndrome, and sleep disorders, a hyper neuro system. There's really no "cure" for it, and all of us can vary so much with our symptoms, that you just have to find a treatment plan that works best for you, individually. My Internist said that they're finding that lots of people with FMS actually have a sleep disorder. When you are sleep deprived for years and years, your body can really start breaking down in a number of ways.
I personally think it is definitely connected to female hormones in many cases, as many women seem to develop it during the 5-10 years before menopause. I know I did.
There are lots of theories out there of its etiology........."leaky gut syndrome", "yeast overload", too much Substance P, physical abuse as a child, depression, etc. Thankfully, there's more and more research being done on it. 20 years ago, we were told we were just crazy. Yes, craziness and depression can have similar symptoms......but we're not all crazy.

Bearded_One · Post by **Bearded_One** » Thu Jan 10, 2008 11:31 am

I have been on CPAP about 13 years and I developed fibromyalgia-like symptoms about 4 years ago. I had a sleep study over a year ago and no notice of alpha intrusions was mentioned in the report.

I have had a bunch of tests, the only problem that was found was low testosterone, and although Androgel has raised my testosterone level to the normal range, it did not reduce the fibromyalgia-like symptoms.

Although more women report fibromyalgia symptoms, some doctors believe that it may be as prevalent in men as in women. Fibromyalgia symptoms are also a component of Gulf War Syndrome.

Wulfman · Post by **Wulfman** » Thu Jan 10, 2008 11:34 am

I'd be curious to know if those who were diagnosed with it and then have been on XPAP therapy for some time have seen improvements.

Den

Wulfman · Post by **Wulfman** » Thu Jan 10, 2008 11:36 am

Just to clarify.....I started typing before I saw Bearded_One's post.

Den

Country4ever · Post by **Country4ever** » Thu Jan 10, 2008 12:11 pm

I think because it was, for a very long time, mostly a female problem, it was dismissed as just neuroses. I have learned through personal experience that when our hormones (male or female) start fluctuating, insanity can definitey happen! Like an old friend of mine said, "Remember in the 1800's, women were put into insane asylums while going through the change!". I have experienced first-hand a total body breakdown when my hormones starting changing. It was a horrendous experience. It felt much too serious to "just" be the change. I think that some of us are wired biochemically a bit different than others, and are truly dependent on our sex hormones for stability mentally and physically. When I began with all these other horrible symptoms........IBS, tingling in my legs and arms, panic attacks, constant diarrhea and feeling like a small animal was living in my chest, feelings like I was going to pass out all the time, ringing in my ears, fatigue so horrible that when I even went to get groceries, I wasn't sure I would make it home on my own steam, daily migraines, problems swallowing, smelling smoke when there wasn't any, pain that required the emergency room, and on and on and on.

I was tested for everything in the book.......heavy metal poisoning, lyme disease, M.S..........I had it all, and by the tests, I was completely "normal"!
As I've been in menopause for a couple years, I'm slowly feeling more stable. I think my internist was hoping for even better results from the PAP machine, but I'm grateful for just a little more energy. I would definitely prefer better mental improvement, and less stiffness and pain, but I'm sooooo grateful for the little bit of energy it gives me.
So Beardedone.....if its your hormones that are fluctuating, it wouldn't surprise me if all your problems were from that.........as unlikely as it might seem. Have you been tested for all the other possibilities? I wouldn't settle for that diagnosis, if all the pother possibilities weren't tested for.
Not all people with FMS have alpha wave intrusion. I have had sleeping problems throughout my whole life.....even as a little kid.

sharon1965 · Post by **sharon1965** » Thu Jan 10, 2008 3:08 pm

hi there
i was dx'd with fms 13 years ago
i, too, was hoping cpap would address it more than it seems to be, as i also find it hard to know whether i'm seeing real benefits or not...the reports tell me my ahi is good, my spouse tells me i'm sleeping much more soundly and peacefully, but i still experience daily global pain, muscle weakness, fatigue and the occasional acute flare up...my energy levels fluctuate madly, as i'm sure you can imagine; sometimes i feel almost manic, where if i can GET going i can KEEP going to a crazy degree...of course i pay for those times in the days to follow

i'm not familiar with the term "alpha wave intrusion"...my dr. told me that people with fms get "bumped out of REM repeatedly"--is that the same thing? i do experience frequent arousals, in spite of cpap and meds for plmd, i just assumed it was due to my dr.'s explanation

Country4ever · Post by **Country4ever** » Thu Jan 10, 2008 3:57 pm

Its my understanding that when we're awake, we have alpha waves. When we go into a deeper sleep, we have delta waves. Some of us, every time we start to go into a deeper kind of sleep, alpha waves show up for some reason, and make us awake. Its like every time we just start to get some good sleep, somebody yells "WAKE UP!!" There is a med out there for it (Zyrem) but I don't really want to take it. In my sleep study I didn't have any REM sleep and hardly any delta waves. No wonder I can't remember anything!

Lee Lee · Post by **Lee Lee** » Thu Jan 10, 2008 5:36 pm

Yes, I have been diagnosed with Fibromyalgia. Also, Lupus and Sjogren's syndrome. I'm not sure which one of those things causes the pain I get, since they all cause pain.
Two plus years of CPAP therapy has helped, very much.
I used to feel depressed and sleepy and I don't anymore.
I DO still have pain sometimes. But I have had a very interesting new diagnosis recently and I'm excited about it. Why excited? Because it's something that can be treated.
Turns out , I have PROFOUNDLY low Vitamin D levels. It's chronic. I take massive prescription Vitamin D on the first of each month and still, at the end of the month, I'm in terrible pain and have terrible fatique.
When I take the D on the 1st of the month, I'm feeling great.
A few days ago, I heard on the news that researchers believe it may be one of the causes of Fibromyalgia! I can beleive that, based on how I feel after the supplement.
I Googled vitamin D deficiency symptoms, and I was flabbergasted at all the bad things it can cause. And I have almost all of them. Here is one of the things I found. (this is from an article on the internet)

"Vitamin D deficiency may be characterized by muscle pain, weak bones/fractures, low energy and fatigue, lowered immunity, depression and mood swings, and sleep irregularities. "

I beleive everyone should be tested for Vitamin D levels.
We are going to be hearing a lot more about this in the near future.
Lee Ann

Country4ever · Post by **Country4ever** » Thu Jan 10, 2008 7:26 pm

Hi Lee Lee,
What dose are you taking?

teach · Post by **teach** » Thu Jan 10, 2008 7:49 pm

I have also been diagnosed with fibromyalgia. I had a hysterectomy at age 38 and nothing has been the same since. I am an educator, married with 3 kids. I never had difficulty before. I am now on an anti depressant, thyroid, hormone, cholestoral medication and cpap. I'm not tiny but not huge either.

I definitely believe there is a connection with fibromyalgia and hormones. As far as cpap helping. I think it does because sleep is so important for the muscle pain. I still need naps some days and I have definately not lost weight using the machine but it has helped.

Lee Lee · Post by **Lee Lee** » Thu Jan 10, 2008 8:53 pm

I'm taking 50,000 units of Vitamin D.
I think I might have to take more, because my blood tests today show that I'm still deficient at the end of the month.

LavenderMist · Post by **LavenderMist** » Fri Jan 11, 2008 11:55 am

I was diagnosed with Fibromyalgia Jan 2001. I started cpap Jan 2006. I have noticed a definite reduction in severity and duration of pain. I have more energy. I have lost 42 lbs in the last 13 months. I still have bad days, but not so many or as bad as pre-cpap.

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