Can you please share your Fibro story with us?

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Regular Member

Date Joined Dec 2009
Total Posts : 80
   Posted 12/22/2009 3:58 PM (GMT -6)   
I am hoping that some of you would be willing to share your Fibromyalgia story.  I am still uncertain of a definitive diagnoses.  It is possible Lupus, but I am still waiting for a follow up with my Rhuematolgist.  I have had my symptoms for 10+ years.
Here are my symptoms:
1)  flare ups or times with no signs of problems at all
2)  numbness & weakness in limbs (hands, arms, feet, legs, even face, back & tongue).  It kind of feels heavy.
3)  recently a new symptom has developed which is burning sensation (feels like vicks vapor rub is on me) and this burning sensation might last 10 minutes in the chest, then in the back, then in left leg, then right and moves around.
4)  + ANA (antinuclear antibodies)
5)  +ACA (anticardiolipin antibodies)
6)  Pleury/costocondritis
7)  Extreme fatigue/exhaustion
8)  foggy feeling (feeling out of it)
9)  anxiety with these symptoms (but then again, who wouldn't get anxiety)
10)  trouble sleeping
11)  one child &  two miscarriages
Thank you again for sharing your stories with us all.
God Bless,
Age 41

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 12/22/2009 4:53 PM (GMT -6)   
I got sick on December 30, 1989 and never got better. I was diagnosed with Lyme a year later and treated with different antibiotics on and off for about 4 years. I improved slowly while on the meds. I stopped meds for Lyme in about 1994 and stayed the same since. I had a lot of numbness and weakness that went away during the antibiotic treatment.

My doc suggested fibro but wouldn't give me an official diagnosis so I wouldn't have trouble getting insurance later on. I've avoided a fibro diagnosis since then for the same reason. I still have muscle and bone pain, fog, and fatigue plus a few other symptoms but I am nowhere near as bad as I was before I was treated for Lyme Disease. I gave up my engineering career, now I work for about a fifth of my previous income.

Regular Member

Date Joined Jun 2009
Total Posts : 286
   Posted 12/22/2009 5:29 PM (GMT -6)   
My name is Sarah and I am 21 years old. I am a sufferer of fibromyalgia and have been for as long as I can remember. Mine started mostly with fatigue though. And it was the same way in school. Everyone thought I was just being lazy, that I just didn't feel like going to school, that I got away with too much, etc. I even lost friends over it. To say my high school years were pretty sucky, would be an understatement. My junior year I was diagnosed with migraines and then anxiety. I started counseling and medication, and these helped some, yet I was still constantly tired. But no doctor ever took me seriously. It wasn't til I went to college that I got that help. I found an amazing dr down here for immediately diagnosed me with Chronic Fatigue Syndrome. It made sense, and I was happy to have a diagnosis, not that it made the condition any better. Not too long later, I started experience more pain in my legs, back, arms, feet, etc. I couldn't imagine what was wrong with me, and my dr was stumped for awhile too. He did tests upon tests and couldn't find anything. I started seeing a chiropractor, and that was when the weird fibromyalgia finally popped up. He gave me some literature on it and told me to talk to my doctor about it. I did just that, and my dr then diagnosed me with fibro. Since then, he has been great. He researches fibro, and is always up on the newest treatments. While I still have alot of problems that aren't fixed with the treatments I'm on/doing, I still feel better then I did, and I am so happy to have finally found a doctor who takes me (and fibro itself) seriously. It's a nice change of pace.
"Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength."

"You were only given this life because you are strong enough to live it."


Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, Acid Reflux, RLS, Asthma.

Rx: Celebrex, Buspar, Savella, Lyrica, Requip, Nexium, Symbicort, Compazine, Lunesta.

Supplements: Vitamin B12, Vitamin D, Vitamin C, Ginseng

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 12/23/2009 12:56 AM (GMT -6)   
Hi Susan...

And Welcome to our fibro forum and family. Fibro can be confusing and for some it's difficult to diagnose. But as an old and over used saying goes...if it walks like a duck and talks like a duck and in this case hurts like a duck...well then, maybe it just might be a duck! Fibro and several other disorders can all seem to have the same symptoms but there are small differences that distinguish each of them. What the NIH and research has shown that fibro is a disorder of elimination. You eliminate whatever else it might possibly be. Then when you reach the end and still no diagnosis PLUS you do test for the signs of fibro, then that's it. Simple yet deceivingly difficult.

But here's what I'm hearing in your post. Please correct me if I'm wrong. You are still unsure of your diagnosis partly because of tests that haven't been finished yet. But I'm reading between the lines that you personally aren't sure if you have fibro no matter what the tests are saying...right? Your symptoms are pain that comes for no apparent reason, the pain moves around, feels burning, aching and pretty much like regular, miserable pain. Fogginess, anxiety related issues which covers a broad spectrum. Sleep problems, numbness, flares, costo...right so far? These are all signs of fibromyalgia, but they could go along with a diagnosis of Lupus or MS also.

Yes these are all symptoms of fibro and yes you appear to have them as everyone else here does. You have had these symptoms for 10 years and no diagnosis?? I'm not sure why but often it's doctors who can't or won't come through for us. And other times the patient is left confused about what they have. I don't know what category, if any, you fall into. But IMHO it really doesn't matter. (I want to qualify that statement by saying you need to rule our both Lupus and MS before my statement is valid.) That said, does it matter if it is or isn't fibro. If it IS there is no cure. You find the very best doctor you can and stick with them for life. Always remember the choices in treatment that is offered is YOUR decision. Some people try medications, others don't. Either way the bottom line is it doesn't really matter at some level. Work on the things you can and let go of the ones you can't. I don't often give opinions, rather share experience, but if I were you I would work with your doctor on the stress/anxiety issues and the sleep problems. If you improve those then the pain is likely to be less.

Again, all of this falls by the wayside if you get a diagnosis of Lupus but you still will need to manage the pain. Often people with Lupus and MS have fibro associated with or in addition to it.

Not good news yet I hope I turned on some light for you. You have found a wonderful family of folks who not only know what you are feeling every day but who truly care about you. Maybe focusing your thoughts and attention on reducing your anxiety, increasing sleep and in general trying to take care of the symptoms would be most beneficial.

I do hope you get some results that will put your mind to rest and soon. Please feel free to ask any and all questions or email friends you have met here. I'm always open to emails from anyone.

Warmest hugs,
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

New Member

Date Joined Dec 2009
Total Posts : 4
   Posted 12/23/2009 8:03 AM (GMT -6)   
Hi Susan,
My name is Ashlie, I'm 24 yrs old. When I was a senior in high school (2002, so I was 17 yrs old) I got very sick and was treated for lyme disease, although after being tested numerous times, it never came up positive. My dr. said that its very common to get false negatives, and he had ruled out pretty much all other posibilities (lupus, MS, RA, etc). He did send me to a rheumatologist because he said fibromyalgia would be a possibility. That dr was a JERK. All he did, literally, was bend my arm which didn't bother me, and he said "if you had fibromyalgia, you'd be screaming. You need to lose some weight" (I was NOT even overweight!!). So my regular dr then treated me with antibiotics for lyme and I was fine after a few months. forward to this year. All summer I was having joint/muscle pain, but we had a LOT of rain here so I just brushed it off as arthritis-type pain which I figured was just a lasting affect of having had lyme disease. So I didn't think much of it. By by October, I knew something was really wrong. My pain was getting worse and worse, and seemed to be VERY similar to what I dealt with when I had lyme disease. So I assumed I was having a lyme flare-up, or was reinfected. So I went to my dr (new dr now, not the same one I was with last time), and he agreed that it was probably lyme, so he sent me for the test and started me on doxycycline right away, even before the test results came back. Well...the test ended up coming back negative. And he said the test is much better than it was last time I went thru this, so the chances of getting a false negative are very slim. He also tested me again for lupus, RA, MS, thyroid, etc. and everything was negative/normal.

So then he mentioned fibromyalgia. Which upset me because I thought a lot of drs kind of diagnose that when they dont really know whats wrong...and I thought a lot of drs dont even believe in it. He assured me that that's not the case anymore, they know more about it now so most drs accept it as a real diagnosis. He had already given me a prescription for Meloxicam and a muscle relaxer (when we still thought it was lyme) so he wanted me to continue taking that to see if it helps. It didn't help at all and I ended up just stopping altogether. I've missed over 80 hours of work in the past 2 months. I'm stressed out over this whole thing (of course!) so its affecting my sleep big time, which then also makes my pain worse. I finally went back to the dr yesterday and told him that the meds he gave me originally did not help, and I NEED help before I lose my job. He gave me a sample of Lyrica to try, and wants to see me back next week to see how I'm doing on it. I SO hope it works. I'm desperate for some relief right now.

My dr also said that I may have never had lyme, maybe it was fibromyalgia in the first place. I'm not really convinced of that though, because I had other symptoms that are not fibro constant fever (which of course would indicate an infection) and facial paralysis, which is a red flag lyme symptom. So...I think more likely what happened was the lyme CAUSED the fibro. I had been on Effexor for mild depression/anxiety for several years since having lyme, and I went off of it last winter. So I could have very well had fibro for a long time, but maybe it was under control because of the Effexor. Of course, I'll never know for sure. I REALLY do not want to go back on made my hair fall out and I had really bad mood swings and stuff. My mood was actually more stabilized after I went off of it. So I'm just keeping my fingers crossed that the Lyrica works for me. Oh, I'm also going to start taking a Vitamin D supplement, because a lot of people with fibro have a defficiency in that, and it can help with fatigue/pain.

<end novel> LOL

Regular Member

Date Joined Jun 2009
Total Posts : 83
   Posted 12/23/2009 10:18 AM (GMT -6)   
There are allot of sad stories out there and for the new comers I will pray for you.

I pray that these young people need not to be in pain.
I wish you all a very Merry Christmas and GOD BLESS
ED, in Oregon
11. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes.  The forums are intended for offering mutual personal support.  Debating controversial subjects should be taken elsewhere.  Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others. 
I'm sorry Ed but I had to edit your post.

Post Edited By Moderator (Marlee2) : 12/23/2009 8:54:09 AM (GMT-7)

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 12/23/2009 11:13 AM (GMT -6)   
First I would like to welcome all the newbies I have missed recently.
My fibro started with anxiety and fatigue after a long stressful time in my life in my late 40s. It took quite awhile before I actually had my first, been beaten all over with a baseball bat, flare that got me dxd. I had gone through all the testing to rule out all the other things it could be long before the first real flare. After that first flare the pain stayed the same for a long time til I suffered a great loss in my life 2 1/2 yrs ago and it has gotten increasingly worse since.
We all have a different story but it pretty much ends with the same results. Except some say that their fibro hasn't gotten worse and some say it has.
I hope you get answers soon.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

Regular Member

Date Joined Dec 2009
Total Posts : 80
   Posted 12/23/2009 2:01 PM (GMT -6)   
Hi Ed,

I wasn't able to read what you wrote, but I appreciate you comments.
Thanks Marlee2, I appreciate you posting.

I have been doing organic and all whole foods to see how my body responds. Honestly, I am seeing improvements. Who knows there is so much JUNK in our foods and the more I read the more I wonder if that is part of a lot of our symptoms. I am still blown away that titanium dioxide is in our foods amongst other things. Check out the Melisa foundation. It is quite interesting. And I say this because a lot of Fibromyalgia people have symptoms of MS and Chronic fatigue.

Thank you
41 years old
Married with one child
Waiting on diagnoses:  Lupus, Fibromyalgia, or MS.  +ANA, +ACA, MTHFR heterogenous gene A1298C

Regular Member

Date Joined Mar 2009
Total Posts : 285
   Posted 12/24/2009 12:05 AM (GMT -6)   
Hi, Susan and welcome!

I was DX'd almost two years ago I think, though my mother thinks I've had it since I was a child, having growing pains even as a toddler, crying in pain for no apparent reason. She said it faded when I first started school, but came back before I was diagnosed with PTSD at 11, after being abused by my father. I was always the sickly sort, chronic bronchitis, heart problems and two heart attacks at 22, multiple miscarriages and a very difficult successful pregnancy (He's 4 and perfect). After a very chaotic period, ending with my new husband having two surgeries in the first yr of marriage, I got sick had to quit college and after 4 months and numerous test I was told I had fibromyalgia and arthritis in nearly every joint added to the previous problems I'd had. So now, with a 5 lbs lifting limit and a prescription to Lortabs and Buspar, along with several vitamins and herbals, I have more a of a life than I have had since I was DX'd. It seems just about the time my flare would end, my husband would need another surgery, and another flare would build until it seemingly 'popped' as soon as he was safely out of surgery. This March will be our 3rd anniversary, and he's had 5 more surgeries with another planned this coming March.The back story that he worked on an oil rig and they dropped 68 tons of pipe on his left leg, causing 4 compound fractures and powdered his ankle. 22 surgeries, 2 bone grafts, 1 MRSA infection and an external fixator later, he might be able to walk next month with his walker, if the last bone graft has healed enough to bear any weight. He's been in a wheelchair the last two yrs, after the second surgery.
I know I over do it sometimes, I have to, we have no one close enough to help us. I do what has to be done regardless of how I feel. But I feel proud of myself for my accomplishments. Okay, so I don't work, but I have a closer relationship with my husband and son than many others I know, they are happy and healthy. To me, a lot of Fibro is not thinking about what you can't do, or shouldn't do, but the good things you have and are able to do.

Any idiot can face a crisis - it's day to day living that wears you out.
Anton Chekhov

My train of thought derailed long ago, now I take the bus, few more stops, but I eventually get there.

FM, costocontritis, wide spread arthritis, fibroid tumors, PTSD, 2 heart attacks at 22, PID

Buspar 10mg, Acetometaphen 500mg, Zantac 150mg, B-complex, Tramadol 150mg

Regular Member

Date Joined Jul 2007
Total Posts : 43
   Posted 12/25/2009 12:38 AM (GMT -6)   
I just want to respond to Lola... You DO work! Just because you work in the home and get the worst paycheck ever (mine's the same) does not make you any less of a factor.. your probably the biggest factor in your family.

I used to do that to myself... and I got really depressed, over the fact that I no longer got a paycheck & worked outside the home due to my fibro & other health issues. After going to therapy, I now know that I have one of the biggest & best jobs that is out there.. being a mom. Even if the pay is not in cash.. the hugs and smiles from my kids is the best pay in the world!
Love & Soft Hugs,

Dx with: CFS '09...Fibro '02...Myofascial Pain '02... Gerd '03...Migraine Headaches...
Restless Leg Syndrome '08...IBS '99...Depression '99...
Early Menopause from Hysterectomy '00..removal of gallbladder '00 and appendix '08

Meds: Fentanyl Patch 75mg,Lidocaine Patch 5mg, Ropinirole 1mg, Zoloft 50mg, Aciphix 40mg, Darvoct as needed to help with RLS, Aleve & Tylenol as needed

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