Fibromyalgia: The Invisible Disease

Fibro_hell...It's NOT all in your head...

Hello Everybody!
Sorry everybody, I've been kind of really sick the past couple of weeks!...Sinus Infection gone WILD! You know how it is...when you get any type of infection or virus all of the joints and such get so much more inflamed and sore!!! My neck has been stiff and sore, and I've been sleeping so much.

I hope all of you have been well, though!


New Theme Layout...

So, this is the new theme layout!  I hope you all like it!   :-)     I like it, and find it to be much more "readable."  I would've preferred Black Text, but, I couldn't find a theme layout with the right shade or light enough shade of gray, which I liked, to have the black text. 

I am going to ask with the new layout, if you could all possibly take the time to just "edit" your post entries just a size, that is, and only if it appears too small to read.  I did check out several layouts and really did like this one best.  It says that I can "edit" your entries, so, I figured that all I would do is make the "small text" larger, and nothing else, but, while it let me start that process, it wouldn't let me save the edit.  The only editing it will Actually Let ME Do, seems to be to either just Delete the entry, or Delete the entry and report it as spam!  Well, that's NOT my intentions here...except maybe for the one in Spanish that is so obviously spamming us about Alopecia products!  But, I'm going to leave that one up for a while, just so my message to them gets to them...unless, of course, being that it was spam, they aren't coming back here, anyway.

So, I know that you all have posted many more entries than I have, but, if you wouldn't mind, and if you have the time, would you mind editing just the size of your text, if it's really tiny and hard to read?  THANKS!   ;-)    I'm not really as concerned about the comments, as, on the comments pages the text size seems normal.


Thanks, again, and I hope that everybody is having a comfortable weekend! 


Physical Pain Vs. Emotional Pain

Who here is or was, at one time or another, just as tired as I was of hearing "well, it's natural for someone with Depression to feel physical pain"??? 

Did anyone, Not "In The Know" about what's it's like to have Fibro or any other Chronic Pain Condition, EVER think that maybe, just maybe, WE ARE ACTUALLY DEPRESSED BECAUSE WE ARE IN PHYSICAL PAIN EVERY FREAKING DAY OF OUR LIVES??? 

Hmm...That's a Concept, huh?

Sorry, I was just reminded of this "Frustration."  Reminds me of the "Revised" version of "The Serenity Prayer."

God, grant me the serenity
To accept the things I cannot change
To change the things that I can
And the Wisdom To Hide
The Bodies of ALL of the Doctors
Who said, "It's ALL in YOUR HEAD."


Or, something like that.  I am usually a stickler for finding and posting the "exact" words, but, I'm just too tired right now.    :-/

Added Info I May Not Have Mentioned About EDS...

By the way, I forgot to mention that, besides the Mitral-Valve Prolapse that can occur, or the Aneurysms that can occur, you can also develop Heart Murmurs due to little (we hope) holes in the Heart, due to that Faulty Collagen Protein that makes up the tissues that make up our Heart Muscles! 

As I said in my earlier post, my Father had the Mitral-Valve Prolapse, and the Aortic Aneurysm in his Abdomen, near his Groin.  He had the Mitral-Valve fixed or replaced, when he had a QUINTUPLET (YES, I mean 5 Arteries...the 4 Main Arteries connected to the Heart, and 1 smaller one that comes off of one of those, or something like that.) ByPass, and he also had to have a Dacron Sleeve put into that Abdominal Aorta to repair that Aneurysm.  It's scary stuff, that's for sure!

I was diagnosed with a heart murmur in 7th grade, then in my Junior year of high school the same doctor said that he could no longer hear it, but, that they can sometimes heal themselves.  Several years ago, my doctor told me that it was back.  Lovely.  I am suppose to have tests done, scans, to check to be sure that I do NOT have that same aneurysm in my abdomen, as it is hereditary from what my father's doctor told him, and it turned out that both my uncle and my grandmother had them, in the same exact location in their bodies as my father!  Again, scary stuff!  :-/   I'm just NOT ready to deal with it just yet, and was told that I supposedly could wait until the time that I am about 50, but, now I'm wondering, should I really wait?  I'm thinking, maybe, NO! 

I'm sure I also forgot to mention that the information/literature says that a lot of "female problems," or "reproductive problems," is common in the type that my daughter has, and that miscarriages are common, as I guess the tissues of the uterus or cervix stretch too much.  I haven't told my daughter this yet.  I'm not really looking forward to it, as, I have had 2 miscarriages that were medically diagnosed and treated...they were really bad and I was hospitalized overnight for one, and spent 6 hours or so in the ER for the other, but as I said, it was 2 that were "medically diagnosed," but I believe that there were several more!  After you experience even one of them, and especially two of them, along with other pregnancies, you get to know the signs of pregnancy and the signs of miscarriage.  If I didn't get sick afterward, like I did with one of the medically diagnosed ones, I didn't seek medical attention...I just got very disappointed and then very depressed.  Also, my daughter was almost a miscarriage...they called it a "Threatened Abortion."  I almost lost her in the 6 - 7th weeks, after passing out in the public library and hitting my head on one of the shelves.  I had to stay home after that with my feet up for a week or so, as I was "spotting."  That was how the first miscarriage started the spring before that.  I had known something was wrong a few earlier, before I even knew by medical diagnosis that I was pregnant.  I had just been put on some medication right before getting pregnant, for Narcolepsy, and had a bad reaction to it...with my liver...and had to take medication to counter that.  My birth control didn't work, apparently, and a few weeks later, while at work, I started cramping really bad.  I also felt "flu-ish."  I left to go home to rest, but, I felt deep down that something was really WRONG!  I called the doctor, made an appointment, went in, they gave me a pregnancy test, but it came out NEGATIVE!  They knew that my uterus had grown a bit, and they called it " 1+ " in size.  They were concerned and sent me for an ultrasound.  The ultrasound showed NOTHING!  They were puzzled, as they knew that there had to be a reason that my uterus had grown, but, couldn't figure out why, as of yet.  I went home, depressed and scared. 

My maternal grandmother had miscarriage a set of twin boys, after two successful births (my uncles), and before giving birth to my mother.  After my mother, many years later, in her late 40's I think, she thought that she had miraculously gotten pregnant again.  The doctor's thought that she was 5 months pregnant.  They later found, in surgery, that it was actually a TUMOR the size of Large Grapefruit, which weighed almost 5 pounds!!!  She had her uterus removed at that time, also!

When I was sent home with no answers, I thought for sure, after already having one miscarriage, that I was going to end up like my grandmother.  I stayed in bed for 3 days, under the blankets, head and all.  I didn't even want to feel the air move around me!  I KNEW that something was WRONG!  I didn't know if it was a result from the miscarriage, which was like 5 - 6 months earlier, fearing that maybe they didn't "remove" all of the dead "tissue," and now I was VERY SICK, or if I was having another miscarriage, but it wasn't showing up as a pregnancy because of medications, or the fact that it was still so small.  I just KNEW something was very wrong!  A few days later, I received a letter in the mail...I had lost my job!  Apparently, during all of this, while I had my head stuck under the covers, wallowing in my own self-pity and fears, I forgot to call work, AGAIN, and the fact that I told them that I was sick a few days earlier was not enough.  I had to call EVERY DAY!  (I do get it now, but, at the time, I guess it wasn't my priorty.)  A day after I received the letter, I had a follow up with my doctor, and he did another pregnancy test.  HA!  Turns out... I WAS PREGNANT, AFTER ALL!  They figured about 3 - 4 weeks along.  A couple of days later, I went to the library, passed out, and in the emergency room they tested me again, did an ultrasound, (the EMTs thought I was hallucinating or something, when I started to wake up and told them that I was pregnant) and they said that I was actually 6 - 7 weeks pregnant.  I asked why it had not shown up the week before, and they figured it was the meds I was on.  That's when I was told to stay home with my feet up for a week.

Now I was pregnant, single (well, he was immature and non-commital...he couldn't stay faithful, and I couldn't handle that.) and without a job.

Anyway, besides the miscarriages being one of the effects of EDS, I have also had A LOT of problems with Horribly Painful, Heavy Periods, which sometimes actually make it impossible for me even stay standing up for more than a minute or so!  The pain is not just in my lower pelvic/abdominal region, but, also in my upper abdominal region, and my hips, and thighs all the way down to my knees, and sometimes on one side all the way down to my foot.  Supposedly, this is from the cramping muscles, which are attached to other things, pulling from all directions!

Like I said, I haven't told my daughter this part yet, and I fear what she has in store for her, reproductively!  It makes me sad to think about it, really, as the literature says that EDS can sometimes make carrying out pregnancies successfully, very difficult, and even impossible!  I've never had a problem GETTING PREGNANT, only "MAINTAINING THE PREGNANCIES" TO FULL TERM!  Yes, I'm fearful for her...I feel very bad...I feel like, somehow, it's MY FAULT!...My know.

More To Come...

I will be reading through all of the posts and comments that I have been missing over the past few years, in my own community. Ugh. I mean, not UGH that I have to read them all, because I will enjoy reading them...ALL! Just "ugh" that I have not been here, actually. Now that I see that there has been activity in the community, I'm really sorry that I have been gone.

When I am through reading everything, I will also be making some changes, possibly, to the settings, and maybe even the design, color scheme, etc. I'm not sure yet. I wonder what all can be done with a personal account or a community on LJ, nowadays?

Just giving you all a heads-up, so when you come on here next time or the time after that, you won't be confused by the "changes."

Have a Comfortable Day!

Please Come Back, Everybody!

Please Come Back, Everybody!

Hello All,

My name is Sheryl.  I am the "moderator" or "owner" of this community, Fibro_Hell.  I apologize for the neglect that I have shown this community, truly!  You see, I started this community years ago, and it was at a very bad time in my life.  The fact that nobody seemed very interested in this community, at that time, coupled with my fear of my own blogging, caused me to go away for awhile.  Then they completely re-did Live Journal, when, I think they said they sold it or something.  Anyway, this was years ago!  When I tried to come back during that time, I seemed to have a hard time getting in, and/or navigating the site anymore.   So, I went away again!  Just to give you an idea of how long it has been since I have blogged on LJ, when I changed my password today and logged in, there was a little thing under my name or something, that said "Last updated 212 weeks ago"!!!  WOW!  I've never really thought in terms of "212 WEEKS!"

When I say that I feared my own blogs, I mean, well, for example, just look at my own username!  That might just give you an idea of just bad off I was when I started both of my accounts.  Sometimes, I write things that are truly what I am feeling at that time, but, while I am writing them, I feel really bad, and when I am finished I feel even worse, not better!  Then when I re-read my own posts, as I am forever editing and proofreading, some of my own posts "frighten" me!  When it gets like that, I tend to go away for a while.  I never intended on being this long.

So, anyway, for other reasons, which I won't really go into right now, I was doing a "Google" search on my email address, and it brought up results for a website called "Bloglines," or something like that.  The text was all in spanish, but, there it was...MY email address mixed into this Spanish result.  I went to the site and found several posts from MY community on LJ, Fibro_Hell, from other users, and one in Spanish.  This is what prompted me to come back, as I saw posts from as recent as this past October (and December?), and one user saying how she was a little surprised and disappointed that no one had responded or replied to her.

I really, really do apologize for that!  Had I known that anything was going on in this community, or that it even EXISTED anymore, I definitely would have come back SOONER!  Honestly, for some reason, I thought both of my accounts were deleted, as I NEVER get ANY notifications anymore!  I've changed that...I reset my settings to send me email notifications.

So, please come back!  Share with me, share with us, and while I have to head off to school right now, I have a bit of info to share with all of you!  I've learned so much about Fibromyalgia in the past several years, and have even learned what parts of "Fibromyalgia" supposedly ARE and ARE NOT actually FIBRO!  Has anybody ever heard of MPS:  Myofacial Pain Syndrome?  How about EDS:  Ehlers Danlos Syndrome?  I will most likely be starting a community for EDS, as it is suppose to be RARE, and yet very debilitating, if you let it be, but, I can't see how ANYONE can really live a completely "Normal" life with it! 

More to come later...but NOT 212 Weeks Later!  I PROMISE!

Maybe, I'm on the right path to a good Doctor..?
cure for FMS
I went and saw a new Doctor on Wednesday.
She seems to be more hip into FMS.
YEAH !!!!
She is having me try Flexiril, as she says it helps rejuvenate the muscles at night.
This way ,you are not so fatigued in the mornings from no sleep.
I am not sure, I like how it makes me feel so foggy.
I will try it for a month and she says if this does not work, she is willing to give me a pain pill, that is not suppose to be so addictive.
I believe she said, it's a newer pain med.
Can't remember the name..Hmmm
So, I am not feeling as frustrated...YEAH !!!!LOL

I have to say, I was some what disappointed, that I did not receive any feedback in my post about feeling frustrated.
I was not looking for sympathy, a little empathy would of been nice.
You know a little hang in there.LOL.
Oh well,it is what it is......
Never be afraid ,to speak your opinion on anything I post,please.
I am grateful out of my friends post,I have met 2 wonderful outspoken peeps.Thank you.

Also, thank you headbanger118, for allowing me to borrow your beautiful icon.

I hope this finds you all in this community, feeling as best as possible.

Well, I need to go and get Momma ready for the day.
It's Nascar day, go #24. LOL

in love, light & peace to all.

indian with wolf
I was wanting to know, if their are any of you in this community, that would like to start up a freindship?
As you all know, it can get pretty hard to make friendships.
I get real irritated when ,I have to continue to explain what is wrong with me and how people get real angry at me, when I have a freindship and I have to cancel  outings, because my FMS decides to spiral.
I am 49 yrs old,I am a Mother to a 28 yr old daughter,a Nana to a 11 yr old boy,10 yr old girl and a 7 yr old boy.
I am my Momma's caregiver.
If you would care to , you can go to my LJ and see what my interests are and see if you would be interested in sharing.
If so, just add me to your friends list and I will do the same.
Thank you for taking the time, to read this.

love,light & peace be with all,
Ramona (WW)

I am so frustrated !!!!
me 2009
I am needing to vent, the frustration,anger and pain that I feel and have been feeling for about a week now or in reality since 2003.
In 2001, I was diagnosed with FMS in Las Vegas,NV.
The doctor there, was very much into studies of this disease and was willing to try all kinds of medication and exercises, to try and help me with the pain, no sleep, stomach problems and etc.
What he tried, by no means took the pain away, but it helped me live more comfortable with it.
In 2003, the love of my life died of cancer and l had to make some major decisions, about where I would go with my life.
My Mother, whom is 81 years old, needed me, as she is crippled from arthritis and other things(demensia)(sp) that come with getting older.
I chose ,to move out to Colorado and care for her.
Since coming to this town, I have found Doctors are not very hip to FMS and the other things that go with having it.
I also, need to mention in this frustration post, that I have been clean and sober since 4-14-95.
In my life, I have always tried to be straight up about, where I came from and the mistakes I have made in my life.
So ,I have always let physicians know, I have a past of drug addiction.
In Las Vegas, the Doctor respected that I had conquered my demons and made a life for myself free from all the drugs and alcohol.
Since coming to CO.,I decided to try and live with this FMS on my own, since Doctors here are so ignorant to it.
They put me on different sleep meds, anti-depressants(sp) and stomach meds.
But ,nothing for the pain.
Now, here we are in 2008 and I can't do this anymore.
They have me on Cymbalta 60mg and Alprazolam 1 mg x 2.
In May of this year,I asked my Doc to let me please try Lyrica.
 Wouldn't you know, I am one of them persons that ended up with a allergic reaction from it.
Swollen lips and face.
So, I can't take that.
So, I ask the Doc if I can go back on the drug, that my Doc in Vegas had me on?(Norco)
She said no, because you have a history of drug addiction.
My daughter, whom was with me, blew a fuse and said to her, what are us, her family and her, suppose to do, when you want to hold a past against her, that has been clean since 1995????
Her reply was, I would have to let them try me on several different other non pain drugs.
So, have a appt. with another Doctor, whom may or may not discriminate(sp) me for a past, that I allowed to be let known.
I am at the point, if I have to continue to live like this, I have to ask myself why and will I???
I do not feel whole and I feel angry, that I ever let my past be known.
Maybe, I should try the Colorado
Has anyone else been thru such BS, trying to help yourself or can you offer any suggestions??
Thank you, for letting me vent and sorry I have taken up so much space on your page. 

In love, light & peace,
Ramona (WW)

Intro and question
Brink - flarn_chef
Hello everyone - I'm Suse and I have been lurking in this group for about a year now, I think. I was diagnosed with fibro in July 2001, and ended up having to sick a lawyer and the Human Rights Commission on my employer, which of course ended my employment there (I went on sick leave in June 2002 and settled with the company in early 2003). I unfortunately flopped from the frying pan into the fire because I ended up with another boss from hell, and I essentially had to threaten legal action again to get her to back off, and while my situation here at work is far from ideal, I can start work later in the day(10 am) and, well, I still have a job and some money coming in, so that's something, right?

I would say my fibro is "moderate" these days, because while I have bad days and average 1 to 2 sick days a month at work (it's been more this year because of the hellish winter we've had here in Toronto and a higher-than-usual number of migraines lately), I can still work and get around well enough, etc. One thing that really bothers me is that I have to be on some form of birth control (pill or patch) because of my periods and either because of that or because of taking Advil and other painkillers for so many years, I seem to retain water most days of the month instead of just the week I'm PMS-ing. I can't seem to lose any weight and in this last week alone I've gained 3 lbs. (15 in total since 2005).

All that blather leads to a question. If all of this is because my kidneys or liver are not working properly anymore, is there any way (herbal, diet, other) that the damage can be reversed, or am I doomed for them to just keep getting worse?


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