Old 10-04-2013, 12:55 PM #1
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Default Wrong diagnosis before finally being told its Fibromyalgia?

Fibromyalgia, like many disorders such as epilepsy is difficult to diagnose. In most cases it can take even several years to diagnose and to get to that most of the time, you go through a lot of wrong diagnosis. That on its own can really worsen the situation and make things worse and be frustrating during the time.

Can you tell me, how many diagnosis did you go through before you were correctly diagnosed and how long did it take?
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Old 10-04-2013, 06:21 PM #2
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I started out going to Neurologists, because my family doctor thought I had a muscle disorder or MS. I saw at least 6 different neurologists, over a 4 year period. Most of them were very rude and made me think I was crazy because of all my weird problems that were copycats of MS. Finally I was referred to a rheumatologist and got the diagnosis of fibro. However, at that time most doctors did not believe this even existed. So it was discounted and I was referred to mental health persons, who in turn examined me and said it was not a mental problem but a physical one. So I was back searching for an answer again and finally received the diagnosis of fibro again.

So you ask how many diagnosises (5) and how long (7 years).
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Old 10-14-2013, 08:55 PM #3
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I had to go to see a lot specialist, I saw a lot neurologists and even a couple of rheumatologists (I thought I could have arthritis or something like that, but I was WAY too young for that!). Just like with 1sweed, I was treated very badly by some doctors. One of my doctors recently told me I had the medical history of a 75 year old woman... REALLY?! Was that even necessary? Of course not, doctors are supposed to help and be professional, but they have proved to be the coldest and meanest individuals ever!
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Old 10-15-2013, 03:18 AM #4
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I think one of the more common diagnoses is that the person is faking it. I know that's what I had to deal with for awhile. Plus, just a lot of confused looks on the doctors faces as tests came back time and time again with nothing showing up.
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Old 10-15-2013, 05:38 AM #5
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

My dr read the report from the rhumetoligist said ya ok take this. Then told me I would get better just take some pills and it would go away it would just take some time.....I don't think he believes in fibro..starting a search for a new dr but they seem to be few and far between the ones taking new patients...still waiting for sleep study appt but the cat scan didn't show anything so ill be fine drs opinion...
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Old 10-15-2013, 11:32 AM #6
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I was pretty lucky in that they diagnosed me with fibro pretty quickly. They did want to make sure that I didn't have MS, since symptoms of MS can look similar to fibro. They tested me for many things, but it took them under a year to diagnose. I was very lucky.

I was also very obnoxious. At the time I became ill, I was a Pharmacy Tech, and I was going to school with the thought of being a Physician Assistant. I had a medical background, and I was aggressive with them to figure out what was going on. I refused to let them poo-poo me off.
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Old 10-15-2013, 12:55 PM #7
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I went to my PCP in 2010 with a tick bite, thinking I had Lyme Disease. Pain, swollen lymph nodes, glands, rash on my chest and face (not related to the bite), extreme fatigue, etc. When they did my blood work my ANA was positive with a 640 ratio and it was negative for Lyme. I was seen by 2 other doctors and my gastroenterologist (I have Crohns/Colitis too) and all said it was Lupus. I had been treated off and on for Lupus until this year when I saw another rheumatologist for extreme symptoms. Blood work came back with a 5120 ANA but all other blood work was fine. He then diagnosed me with Sjogrens Syndrome and said it was most likely fibro but could also be lupus or both. More blood work and he now thinks the ANA could be high from the Sjogrens AND Reynauds (classic of lupus sufferers) and I have every quality of fibro. So that's the diagnosis for now (until more things are done for lupus).

I suffer from Crohns/Colitis, Reynauds, Sjogrens, Severe Osteoarthritis, and now fibro. What made diagnosing me difficult was that most of those illnesses can mimic fibro in one way or another so I was basically pushed around to this doc or that doc.

My saving grace was a PA in a new office who listened to me and sent me to the latest rheumatologist. Both agree fibro IS an illness and it's not to be messed with. So I guess after 3 years (and many more of them with symptoms) and 6 doctors, I finally got my diagnosis of fibro.
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Old 10-15-2013, 10:10 PM #8
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I was recently talking to an old friend who had been diagnosised with Lyme Disease, several years ago. She had the treatments and is now in remission from the worse symptoms. However, her doctor told her that the arthritis condition that developed with the Lyme, was fibro. So I was wondering if your doctors in the course of diagnosising your conditions ever made reference to the arthritis in lupus or lyme disease, Sjogrens or etc.., as being fibro?

My friend's doctor is a specialist in his field and her telling me this made me wonder what is really going on. Not to say everyone here has all the other disorders, but if fibro holds the key, so to speak with these very serious illnesses, then the cause of fibro is that much more important to know about and find.

What is your take on this? Seems a bit strange but also scary, unless doc's are just lumping these painful muscle symptoms together. What say you?
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Old 10-17-2013, 09:53 AM #9
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I am newly diagnosed. Just received my diagnosis a week ago. 2 years ago I got what my family doctor thought was shingles, but I never developed the rash, my doc said that is not unusual. Well, the "shingles" pain never went away. I was on pain meds for 6 months before I told my doc I didn't want to be on narcotics anymore, so he put me on Lyrica. Wonderful! No pain as long as I was taking the Lyrica. But the fatigue never went away either and the Lyrica didn't help that. So, I thought, everybody is tired. Then my brain left me, in what I now understand as "fibro-fog". It was diagnosed as adult ADD. I also suffered from depression, because I couldn't think straight and I hurt all the time. So I have been diagnosed as ADD, shingles, depression and what my doc called "myofascial pain". I have had shots in my neck, shoulder and lower back because of the "myofascial pain". Finally, last week I went to my doc because for the last 3 weeks my low back and hips have hurt so much I can hardly walk. It feels like my hips just seize up and I can hardly move my legs and it seems like the Lyrica isn't working as good as it was before because EVERYTHING hurt! I felt like I had been hit by a train and the fatigue, wow, so tired it hurts. Finally, he did the pressure point test, did a couple of x-rays "just to be sure" and said you meet all the criteria for fibromyagia. I have been trying to learn as much as possible about it and now I can see that so many of the issues I have had the last 2 years can be attributed to that.
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Old 10-17-2013, 05:15 PM #10
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I have had times when my hips seized up just as you mentioned. Usually I am walking along and suddenly I can not move for the pain. It kind of holds me in place and I can't move for several minutes, then suddenly the pain is gone and I can walk normally again. I always worry it is going to hit me in the middle of crossing the street and I might get hit by a car. It is painful and scary when it happens because I often wonder what if I am stuck here forever or end up in a wheelchair.
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Old 10-21-2013, 06:51 AM #11
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

When I first went in, they suspected lyme because I had a tick bite. But, no 'target rash'.

I was told that stress and some of my illnesses (which can cause a good deal of stress) can cause my fibro to flare and that my fibro is separate from the rest. With me, it was very difficult to diagnose because Crohns and Sjogrens cause muscle and joint pain, fevers, rashes, and extreme fatigue. Lupus does too. There are other illnesses that can mimic fibro too, such as MS. Fibro and not Lupus was my diagnosis because the doc didn't see the telltale butterfly rash on my face. However, in being diagnosed with the Sjogrens, I had the symptoms (VERY dry eyes and mouth, joint pain, swollen lymph nodes, etc... things also associated with fibro). He said the Sjogrens is what made my ANA high because all other bloodwork was fine. He said if the symptom persist, and the bloodwork (ANA) keeps staying high, they will delve deeper into the Lupus Diagnosis. And if I get that, it will most likely be stemming from the meds I take for my Crohns (remicade and humira both have a 'side effect' of lupus and lymphoma). At this point, given all that I already have, I will be happy with the fibro diagnosis. BUT... with all that, I do see a correlation of fibro and the rest... it's like it mixes in with them somehow. In my case, we treat each illness separately. Because they all have similar symptoms, if I say, treat the crohns but the symptoms persist, then it's probably not the crohns. I have yet to be in full remission from any of it and it is a pain because they all have similar symptoms.

My ex has Lyme. He is in remission but was told the arthritis he has not only came from the Lyme, but will worsen over time, whether he is in remission or not. He was also told that the symptoms will flare with stressful situations (such as fibro). My first round of fibro flare came 4 month after invasive surgery. This flare came about as a result of a mega amount of stress in my life. As the stress factors have been settling, (with the help of Cymbalta!) the flare seems a tad less too.

I think if you present with some of the symptoms of fibro... and all else proves negative, they just give that diagnosis because all else seems ok...
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Old 10-21-2013, 07:10 AM #12
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I don't know how long I've had fibro, to be honest. I know since having my first child ten years ago, my body's seemed to be falling apart.
Shoulders, hands, arms, knees, hips, back....it's just been pain after pain. At different times I've been diagnosed with carpal tunnel, bursitis,
arthritis, some knee thing I forget the name of at the moment, depression, and basically just brushed off as whiney.
This present doctor, I basically just went in one day almost in tears, probably the second time I met him. I'm lucky he didn't just brush me off
as overemotional or something. I just told him look, here's the thing, I hurt all the time. Some nights I can't sleep, because my knees or hips
touching the bed hurt too bad. Some days I can barely lift my kids. Other days I am almost completely fine! There is rarely a time I'm not aching
somewhere. I just don't know what will happen if I'm like this at 32! He did the pressure test, and asked me questions, and talked with me,
and then did some tests to rule out other stuff. That brought us to the diagnosis of fibro.
As he explained it it all made sense. It was a relief, to know i'm not crazy or dying from some weird disease, but also depressing because I have
a few relatives (whom I know of, but don't know well) who have this and I knowi t doesn't go away.

A few things that I realised later that aren't normal....stuff like if you bump gently into something as you walk past, or you scratch a bug bite, it shouldn't still hurt that you touched your thigh, like ten minutes later. If you cat stnds on you but hasn't sat yet, the pressure of his paws, shouldn't hurt so bad it makes you grit your teeth. Aching all the time? not normal.
A lot I had brushed off myself as 'normal' for aging.
Turns out, I'm not actually that old!
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Old 11-18-2013, 11:25 PM #13
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I had one main wrong diagnosis. At first they said I had postural tachycardia syndrome. I had many possible diagnoses but nothing "quite fit." They thought I might have Lupus, MS or Lyme Disease. It was quite a process for sure.
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Old 11-19-2013, 10:22 AM #14
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

In 2005 I was diagnosed with a rare autoimmune liver disease called PBC, primary biliary chirrosis. When I began to have joint pain, fatigue, IBS, and many other symptoms, my dr at the time said I was depressed. I kept going back over and over again. I would tell him I had severe fatigue and he would tell me he was tired too. He was not helpful at all. I knew something was wrong and it was not related to PBC. I am a nurse and very persistant. He just kept giving me prescription after prescription i guess hoping something would shut me up. He was just throwing feces at the wall and hoping something would stick.
The first rheumatologist I saw diagnosed me with Lupus. I started on Plaquinil and never got better. I went to the ER several times with riggors. I was violently shaking constantly. My Dr told the ER physician I had severe anxiety and depression. They treated me for panic attacks. After 4 ER trips I ran into a physician who rpealized I was having an allergic reaction to Plaquenil.
I eventually changed PCPs and she sent me to Mayo clinic to the leading expert on PBC. He sent me in the right direction to a new rheumatologist.
It really took a year or more to get the right diagnosis. I was checked for MS , Lymes disease, Crohns, depression (my previous dr refused to treat me until I went to a local mental hospital and had an evaluation.
I actually have PBC, psoriatic arthritis, Fibromyalgia and CFS.
By the way, I still have my records sent to the previous Dr just so he knows what an idiot he is!
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Old 11-26-2013, 11:14 PM #15
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Default Re: Wrong diagnosis before finally being told its Fibromyalgia?

I think I'm lucky so far, but I have literally just started my journey. My symptoms started soon after the birth of my LO, initially I choked it all up to being a new mom and lack of sleep from entirely breastfeeding. Once DD started sttn and I realized something just wasn't right I did some research on my own. I started a journal to track the pains, the different kinds of pains, sleeping...everything about 6 months ago, the data all pointed to fibromyalgia. My journal literally reads like a medical journal check list for mainly fibro, just a little overlap into the other major illness associated with it.

Between my personal research based questions, comments, and concerns, and my journal my doctor ran the battery of labs to rule out the testable illness and diseases my symptoms overlap. So officially I have depression, anxiety disorder, fibromyalgia, restless legs, and IBS...I am very thankful I've avoided many of the issues that seem to crop up before finally getting the correct diagnoses.
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