Can you please share your Fibro story with us?

Hello,

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,

Susan

Age 41

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.

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.

Now...fast 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 symptoms...like 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 Effexor...it 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

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

Marlee

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.