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Regular Member

Date Joined Sep 2008
Total Posts : 21
   Posted 9/11/2008 10:49 AM (GMT -7)   
Hello, my name is Brie and I am new to the forum.
I have been looking around and reading.  This seems like a very informative site and I feel it will be a good place to get some information and support.
I have not been diagnosed with FM.  Not for a lack of trying though.  I'm currently on my 3rd doctor.  I've not talked with him about these issues though.  After dealing with the other 2, I just don't feel like going all into it again rolleyes
With my first doctor, I did get 1 diagnosis after all kinds of different testing.  He says I have severe sleep apnea and that is the cause of all my problems.  I have my doubts though.  When going over the test results, there were many times they said I was asleep and I know that I was awake as I was clock (phone) watching.  I also learned from the sleep tech that insurance will only cover a CPAP machine is the pressure is at 7 or higher.  My pressure was set at 9. 
I was also given an ultrasound to check for PCOS.  He said negative to that also because the ultrasound showed no cysts.  But I have every other symptom that is listed on their website.
So anyways, as far as my thinking I have FM, my mother is the one who first suspected it as she has it.  She did the tender points thing on me and I had 8 of them, so that's what first got me thinking. 
That was 4 years ago.  And after looking at the list that is posted here, I have 40/59 symptoms.  I don't have pain everyday, usually just if I overdo myself.  It's like I have to pick and choose my activities depending on what I am going to be doing that day. 
Like I can't go grocery shopping on my work days.  It's too much.  I become so exhausted that I end up feeling like I have the flu.  Weak, aching, can't stay off the potty (sorry if TMI redface )  So I've learned to pick and choose.
My other diagnosisis include:  GAD, panic disorder, OCD, chronic depression, degenerative disc disease, osteo-arthritis, asthma, allergies.  I have something wrong with my feet that I can't remember what it's called.  Something about my arches and my ankles are separating when I walk. I get lots of pain from this, even when I'm not walking. I also have a torn ligament that they are wanting to do surgery on, but surprisingly, it really doesn't bother me much.  Just swells alot.
Well, that's a little about me.  I tried to keep it short, but that's hard for me to do sometimes tongue

Forum Moderator

Date Joined Apr 2005
Total Posts : 17497
   Posted 9/11/2008 11:02 AM (GMT -7)   
Hi, Brie, and welcome to the fibromyalgia forum!  I'm glad you joined us.  We have a good group of people here that are always willing to help.
Have you tried calling various doctors and flat out asking if they believe in and treat fibromyalgia?  We have some doctors here that have an ad in the yellow pages and it lists what illnesses they specialize in and some of them say fibromyalgia.  That's what I would do.  You can really be wasting time going to some doctors.  It really can be frustrating as well as irritating.  mad    Hmmm...I wonder what would happen if fibro mainly affected men.  I'd love to hear one of these doctors tell a man that it's all in his head!  smhair    You know darn well that would never happen. smilewinkgrin
It looks like you have seen the Fibro 101 thread...the second thread on the forum...since you have the list of symptoms.  If I'm wrong, check it out.  There are links to some good information about fibromyalgia.  You will probably see yourself in these.
Try to read back posts and don't hesitate to ask questions.  We are here to help you.  Hope to hear more from you soon!
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Jun 2008
Total Posts : 726
   Posted 9/11/2008 11:13 AM (GMT -7)   
First of all, please don't worry about talking too much.  I am the self proclaimed "Babbler of the family."  I didn't even give anyone else a chance to vote for me, because I wouldn't shut up long enough for anyone else to vote. smilewinkgrin
Anyway, I hope you feel welcome here.  I know a lot of us have gone through multiple docs, been dismissed or written off as crazy, or just plain told that we should "suck it up."  Personally, I've gone through at least 20 years of wondering what the heck was wrong with me until I FINALLY got a doc who would listen to me.  I've been through a lot of docs, tests, shrinks, and just about everything you could think of before I was finally dxd in June.  So, don't give up.  It may take awhile to find a doc who will really listen.  In the meantime, we are all here to support you in any way possible.  Feel free to ask questions (read fibro 101 at the top of the thread page), make comments, or just come her and vent if you need to.  We may all be different ages, come from different parts of the world, and have our own personal opinions, but there is one thing we all agree on.  We get it. yeah
So, welcome to a family who will do anything and everything to make you feel comfy! :-)

FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
"I'll take the Chivas instead"
-Kelly Clarkson

Post Edited (kelly71) : 9/11/2008 2:05:36 PM (GMT-6)

Regular Member

Date Joined Sep 2008
Total Posts : 21
   Posted 9/11/2008 11:59 AM (GMT -7)   
Thanks for the welcomes :)

For me, all I really want is an "official" diagnosis. If it's not FM, then that's great, but all the signs point that way. But it is something and I want to know what IT is. I don't see it changing my life. I'm not going to quit my job (not for that reason anyways LOL), I'm not going to start taking a bunch of meds (I don't take anything right now), I just want answers. I don't understand why that's such a hard thing to do.

I had written it off for a while. Thinking that maybe the docs are right. There isn't anything really wrong. It's the sleep apnea. It's because I'm so overweight and that causes pain. But if that were the case, wouldn't it be all the time? My goes in spells of good and bad. I'm dreading winter cause it's definately the worst time for pain. I hate the cold.

A couple months ago I started noticing that my muscles would feel a bit weak. Not horrible, but enough to notice. Then it started happening more often, like a couple time a week. Sometimes there would be some burning. Then a couple days ago I started getting twitches. They've eased off some, but still there. My muscles are a little bit sore. I guess from the aching.

I did go and see my dr. about this because it was non-stop. He wasn't sure what it was and ordered a blood test to check metabolic levels. Not sure if constant twitches are a symptom or not, but they sure are irritating and make it really hard to sleep for a person who already has enough issues trying to go to sleep.

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 9/12/2008 7:52 AM (GMT -7)   

Hi Brie and welcome!

I don't envy you with how long this has been for you and no diagnosis. I was quickly diagnosed because the fibro came on "fast and furious" with me. shocked

And yes, muscle twitching can be a symptom of fibro. My twitches started around my eyes and mouth and then worked their way throughout my entire body lasting 2 months. I only get "some" twitching once in awhile now.

It sure sounds like you have alot of the symptoms and like Sherrine said, keep calling around until you can find a Dr. that knows something about this. Good luck and it was nice to meet you!  :-) GamJill


Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
Zoloft, Tylenol 4000 mg., Zanaflex

Regular Member

Date Joined Jul 2008
Total Posts : 368
   Posted 9/12/2008 6:18 PM (GMT -7)   
It took me 4 docs and even now I have one who says he understands I know he doesnt know the full severity and I suspect he humous me at times.  Like sherrine said ask straight up if they believe in it because you suspect you have it. If you get really bad ask him for a specialist, rheumatologist, even then not all treat fibro.  I have left docs many times in tears in early days just glad Ive got one who will at least attempt to listen but I wish I had the energy and I would still look for another.  sue2z turn turn turn
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 9/13/2008 8:16 AM (GMT -7)   
Hi Brie and welcome to our family. I was one of the lucky ones that really didn't know anything about fibro til my doc dxd me and told me to go home and research it. I had a lot of mixed feelings that day. I finally had a dx but not the one I wanted. But it is best that we know our enemy and what we are fighting.
There is a lot of info on this forum and you will probably learn more than most docs know about fibro.
I'm trying to get a referral to a new rheumy and I asked if she treated fibro and MPS and if they accepted our ins. For me I just want to get a fresh view on fibro and MPS from someone that specializes in it. She may have the same view as my GP and she may not.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

Regular Member

Date Joined Jul 2007
Total Posts : 269
   Posted 9/13/2008 9:00 AM (GMT -7)   

Welcome Brie,

     Keep talking, we'll listen. It's amazing how it helps for someone just to really listen. Sounds to me like Fibro but I am no expert if there is such a thing. The one thing I've learned for sure is that our bodies are different and react to this painful enemy in odd ways.

     I wish you answers, and hope, and courage....Chuzzle

"For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ." 2 Corinthians 4:6
A woman is like a tea bag- you never know how strong she is until she gets in hot water.
Eleanor Roosevelt

Regular Member

Date Joined Aug 2008
Total Posts : 97
   Posted 9/13/2008 9:31 AM (GMT -7)   
Welcome to our family Brie! I agree with Sherrine call first it will make life soooo much easier when you walk in the door.Just wanted to send a warm welcome your way.
                             SMILES, Gennie

Veteran Member

Date Joined Jun 2008
Total Posts : 844
   Posted 9/13/2008 4:41 PM (GMT -7)   
Welcome Brie.  Sorry to hear what your going through.  I was lucky to find a good rheumy and she dxd. me the first day.  Although she wanted me to go through sleep apnea test and I put that off.  It seems like everything you go to the dr. for lately they want you tested for sleep apnea.
I think you already have good advice so mostly I just wanted to say "hello and welcome".  This is a good place to come to for learning and friendship.
God Bless!
Of all the things that I have lost, I miss my mind the most!!!!

Regular Member

Date Joined Sep 2008
Total Posts : 21
   Posted 9/14/2008 5:21 PM (GMT -7)   

Thank you so much for all the warm welcomes :-)

I have an appt. with my regular dr. in a couple weeks to recheck my blood pressure.  I went the other day for the muscle twitches and it was high  eyes  

I printed off the list that was posted with all the symptoms and highlighted all the ones I have.  I am going to present it to him when I go in and see what he has to say.

Veteran Member

Date Joined Jun 2007
Total Posts : 906
   Posted 9/14/2008 6:37 PM (GMT -7)   
One reason so many drs. want to test for sleep apnea is that it can cause you to be very fatigued and can also cause heart attacks and strokes. Also it can be easily treated and for many people they feel better right away. I've talked to some of those people. They think their lives have been turned 180 degrees. My dad had sleep apnea and refused to be treated ( he was diagnosed after a sleep study). He died suddenly in his sleep from a heart attack.

I've been diagnosed with sleep apnea. I use a CPAP machine every night. I don't feel any better in the morning than I have in the last 20 years. I have only ONE hour of energy a day--to do everything including shower. But I don't want to have a heart attack or stroke, so I still use the CPAP machine. BTW, I had two sleep studies. They were a breeze and I can't sleep anywhere but my own bed.

Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea

New Member

Date Joined Sep 2008
Total Posts : 3
   Posted 9/14/2008 8:52 PM (GMT -7)   
Hi to all, this is suszen from US. Iam new to this forum I want to know more information about this forum.
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