I'm new - How difficult was it to get a fibro diagnosis

I've had years of difficulty getting any diagnosis. Mostly get sent to physical therapy where they give me exercises or suggest I have the nerves cut to numb them.

Recently, I suggested my GP run tests as I was having a flare up on my neck, shoulder and back. I always have pain, but at times it's unbearable. My ana test came back positive. She agreed to send me to rheumatologist regardless of my results as I was symptomatic and RA and fibro run in my family (Mom, her two sister and grandmother)

On my first visit with the specialist she too agreed I was symptomatic, tender and clearly having issues with pain. She ordered X-rays and more blood tests. She had me return in a few weeks to review but felt sure it was lupus or fibro.

When I returned I was in shock to hear everything was normal. She thinks I might have osteoarthritis, but otherwise work related (hairstylist).

I left in tears with no answers and beginning to feel crazy that she had no diagnosis. I'm confused how there is no test for fibro, yet she doesn't think I have it. I'm 32 and always in pain, I know this isn't normal to feel this way. I'm at a healthy weight, normally active when my body allows. But I find myself working, then crawling into bed with chronic pain. I sleep with hat pads, and survive on herbs and ibprophen 800 mg 3x a day, occasionally flexeril with little relief. I get massages, cupping and acupunture with some relief, but short lived. Every massage theist, chiropractor and acupuncturist agree that my muscle issues are far from normal, yet I can't get a doctor to believe me.

How hard was it for your diagnosis? Did you have doctors that didn't believe you? I was shocked my blood tests and X-rays showed nothing other than ana positive and high bilirubin. My acupuncturist feels sure I have fibro as she treats many patients with it.

I'm wondering if I just found a bad doc and should get a second opinion or find other route for answers? I feel helpless. Any suggestions are welcomed. Thanks in advance!

I'm adding to your subject line so everyone will see that you're new - Debbie :)

Post Edited By Moderator (Acheybody) : 8/27/2013 10:28:54 AM (GMT-6)

Hi HazieB, welcome to the forum!

Getting a diagnosis can be a frustrating ordeal. It is a blend of clinical symptoms and the results of lab work.
Some docs take their time seeing if more symptoms will arise. Blood work can also change over time. I suspect that your doctor is being cautious.

Personally, it took years for me to get a dx. I had autoimmune issues and after getting that mess settled. I recieved a diagnosis of fibro. Having an overlap of scleroderma, lupus, and RA made the process difficult. It took time and 3 differant rheumies, a trip to a teaching hospital to get it all sorted out.

If you feel your doc is not doing the best for you it is time to look for a good rheumie. Stay as active as you can. Walking daily and getting gentle stretching helps too.

My heart goes out to you...hang in there and don't give up!

hugs, Robin

Welcome hazie B- please don't give up getting your diagnoses. If you feel there is something not right, your probably right. We know our bodies and people just don't have pain for nothing. It has taken years for many of us to get our diagnoses. I still get Dr's that don't believe in fibro. I just don't bring it up too much anymore. I have learned to manage my fibro on my own. I got some great info from the forum. You sound like you have tried many things that fibromites do for their fibro.

Sometimes making some changes in work schedule and reduction of stress makes a difference in managing your fibro. Many of us don't use the meds that are indicated for fibro. Too many side effects from them.

I would buy or check out a book on fibro. See if you see yourself in it. As I read a book on fibro it all made sence why I was having a boat load of other symptoms. I hope you find a Dr. you can feel comfortable with.

Hi, Hazie, and welcome! Our blood work usually comes back fine! That's part of the problem. Some have been told its all in their head and have been sent to psychiatrists. Usually a rheumatologist will take a lot of blood work to rule out other illnesses that have many of the same symptoms as fibro since there is not test for fibro. If the blood work comes back normal, usually a diagnosis of fibro is given. It usually takes time for this.

Be sure to read Fibeo 101...the first thread on the forum. There are links to good info and you will learn a lot there. Mood starting links are Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Hello,

i was diagnosed in 2011.

after complaining to my pcp about my symptoms, he sent me to, Not a Rhematologist, but a Neuroloigist. Probably because of all the numbness, and balance issues i had.

It was the Neurologist who gave me the official diagnosis for Fibromyalgia.

He suspected that fms was what i had but to confirm, He then referred me to a Rheumatologist.

The Rhematologist did a complete exam, ran a bunch of labs to rule out Lupus, Rheumatoid Arthritis and a host of other things.

All came back negative.

Back to my Neurologist he had me do an MRI of the cervical spine to look for sighns of MS because i also get alot of numbness and have balance problems etc...

Also Normal.

It was offical, I was diagnosed with FMS that is not secondary to anything else.

This all happened with in a few months time, mainly because it takes so long to get in to see a specialist.

MY Neurologist states to me "FIBROMYALGIA IS VERY REAL" and he believes me, he has other patients that have it also. He understands how debillitating it can be. he says i'm among the walking wounded.

He's treating me with Lyrica at this time.

Ive heard some MD's dont believe in this and it amazes me how long it can take for some people to get a diagnosis.

Either My doctor is missing something (wich he says he's not) or im very blessed to have found a team of md's that can figure this how so quickly.

I would definatley get a second or third opinon.

good luck!!