misdiagnosed fibro

Is it me, or does it seem doctors diagnose people with fibro just simply because they don't know what else is wrong? I have been suffering chronic pain for a couple of years now. (headaches, neck aches, back aches, tummy aches, etc) I am tired of seeing doc after doc after doc and they never really diagnose me with anything, and just throw more and more pills at me that I can't even take due to the side effects.......and who wants to be on tons of pills anyway! Recently, I had a doc suggest I may have fibro. An older church friend of mine said I was too young. (I am 32) It just seems that when docs don't know what else to diagnose, that's when they give you diagnoses like arthritis, tendonitis, fibro, IBS, chronic pain etc......stuff that you are basicly left to suffer with! Hello Docs.............do your research! Do more testing! Stop throwing pills that are just supposed to ease the symptoms. Do the work and FIND A CURE!!!!!!!!!�

Sorry..........I am just so frusterated and fed up with being so young and feeling so old..........I just needed to vent. Thanks for reading.

Fibro is a frustrating disease, to say the least and treatment is even more frustrating because what works for one doesn't work for everyone. You are not too young to have fibro, even children have it. I know myself I have had it since I was a teen, but back then they just said you were crazy. That's even more frustrating because you KNOW it's not in your head. First you have to find the right doc, either a rheumatologist or pain clinic, then they test for what they can and it's more a process of elimination than a diagnosis. Once they can determine it is most likely fibro (they also should test trigger points) then they have to try different meds because different people respond in different ways. You have to accept that this will be with you forever and learn what helps you, heat is often helpful for the aches, read as much as you can so you have the knowledge you will need to help yourself as much as possible, be proactive with your health and insist on being taken seriously. I wish you the best and feel free to ask any questions here, we will help as much as we can.

Agree with both of you so much. Christine

I was diagnosed with fibro last year finally after several years of pain and I am 33.  My PCP wouldn't even consider fibro and it was very frustating.  He finally referred me to a pain specialist after several months and after spending a year with the pain specialist she gave me the diagnosis.  However, what I wanted to say is most doctor's are reluctant to diagnosis fibro because there is no real test for it, at least that is my experience.

Miss Kitty- I agree and sympathize with you completely!! I was diagnosed with fibro about a month ago. For my entire life I have complained of all over pain, I remember complaining that my legs hurt so bad, as a young child, and no one ever listened to me, they just said I was being dramatic. I have rheumatoid and osteoarthritis, my knees and ankles are the worst areas. About a month ago, I had such severe pain ALL OVER that I was in tears at work sitting at my desk, I had to leave work to go to my Rheumatologist. I told her I was in pain all over and the middle of my back between my shoulder blades, my neck and my chest hurt more than anything. She then said it was Fibromyalgia. I literally slept for 3 days getting up to eat a bite or go to the bathroom, for 20 hours straight I didnt even get up. It was terrible. THE worst flare I've ever had. Usually when I am flaring the doc says it's the rheumatoid arthritis, but auto immune diseases are wierd in that if you have one, you probably have another. I too feel like they say its Fibro when they don't have answers. I am lucky that I don't need narcotics at this point. Ok, I probably need them but I refuse them. I also refuse steroids. It's like I've been in pain so long, I just deal with it. It is soooo completely frustrating.

Thank you, everyone, for your info and support. When I am in pain, I often forget that I am not alone, even when it feels like no one understands. My pains are mostly headaches, neck pain, back pains, chest pains, belly pains, tail bone pain, uterous pain, and rectum pain. None of them are diagnosed. I have seen doctors.....they've done some minor tests, and they usually come back normal. So, they often just throw pills at me and send me home to suffer. I am allergic to most pain meds, and other meds I cannot take because they conflict with my blood thinner, Coumadin. So, there's not much that I can do for my pains. I often pray, which does seem to help. I have a very sensitive body anyway, so it's hard to say if I have fibro or not. I saw a pain specialist who pressed on certain areas that were tender. He said I may have fibro, but I was never given a direct "yes" or "no" if I have it or not. Maybe I should go back and find out, or find another doc. Thanks again for your responses. God bless you all!

Have you had any MRI's? Just thought I would ask. I had the awful tailbone pain. Had for years and told lose weight and it would leave . HAHA! After I lost weight the PCP giggles and said, oh , u just lost all your but cushion. This hurt like heck and I don't me just a regular old ache and pain. I had a few months of tolerable pain when the first 100 lbs fell off in 6 months. I know moods help a lot so that could have been it or the release of all the serotonin in the fat.
After the losing weight slowed some I had tailbone pain so bad I couldn't sit. I had to start falling flat on my face to get Dr's to test with MRI;s and such. Finally I went to him black and blue with bruises. That was when the Dr rodeo started going all over the place. At least that did help my disability case for fibro and degenerative disc disease. I hurt even on a liberal amount of pain meds but I hate to see it w/o anything.

I hope you will finally find a Dr to help. I also fro time to time go to a PT that does dry needling. Its sort of like acupuncture but not. The needles aren;t left in , they needle the knots and it breaks them up. Some it makes go away, some it just works temporarily. There are not a lot of these type PT's licensed so you would have to look around. Dermatome charts are used created by a woman years ago. They show where pain is referred to and from. It is weird how she can work on one knot and it shoot a pain to my ear but my ear is no longer stopped up and jaw doesn't hurt as bad.
Shannon

Brain Fog duhhhhh!
I was meaning to say when I finally got an MRI I had a blown disc right above my tail bone that made my tail bone pain excruciating. All that time and it would not have gotten as bad maybe had they just tested. Now I have had a lumbar fusion, another surgery to correct a complication from that after a year of suffering. An MRI would have revealed that earlier as well, but NO let me suffer again for a year with a spinal headache.
I have ruptured cervical disk now and surgery scheduled next week.
Just stating to point out that more testing could prevent more damage than may already be there. Not meaning to hijack your thread.
Best wishes,
Shannon

I have asked for MRI, CT Scan, X-ray, etc and they say it probably wouldn't show anything. (how would they know!?!?) I hurt my back a couple years ago and they tried an MRI. I could have sworn the fillings in my teeth were going to be pulled out!  They had to stop the test, and they didn't believe me when I explained how uncomfoirtable it felt. I suffer allot of headaches now and have seen 3 doctors, scheduled to see #4 in July!  Did any of them do a CT Scan, MRI, X-ray, etc........of course not!  They just keep throwing pills at me that I can't take! (I am allergic to allot of pain meds) I am so beyond frustrated with these doctors!

I hope all goes well with your surgery. May God and His angels watch over you and keep you safe throughout your journey. Take care and God bless.

I had a lot of tests for the last 12 years.   A lot.  They kept looking for a tumor because in addition to the pain, I was severley anemic.  
No tumors in the brain, I have small tumors on my optic nerves, some small tumors on my thyroid.   My GI and berium enema turned up nothing.  The hips and shoulders screamed with pain.  Doc put me on Effexor and Vicodin after my sister died from cancer.  
But they couldn't find any tumors on me.

The pain went away for a while, then I decided I could deal with life after my sister  and went off the Effexor.  Within a year I was screaming with pain.  Not just in hips and shoulders anymore, but like a razor across the muscles in my upper arms.  Across my buttocks like a razor.
Fire in my upper feet.  Fire shooting up my calves to my knees. 

I wanted to literally die.  I finally went to the doc and am back on tons of pills.  Because I am malabsortive, I am low in Vit D, low in protein, the thyroid has changed from hypo to hyper.  My eyes hurt like heck, I can't find a comfortable way to work. I have changed my desk around twice in the last two days trying to find a way to work that doesn't hurt.

The doc said that fibro is more a lack of finding the answer in any tests.  There are pain points, the doc pressed on them and I thought I would go through the roof.
She gave me samples of Cymbalta and Lyrica to get me started.  She gave me B12 shots. She told me to go on protein shakes 3 times a day in addition to eating more protein at each meal.

It's going to be a very different retirement that I envisioned.   I empathize with anyone who is trying to work while struggling with this disease.  It is exhausting.

Candy