Feeling as if I have been misdiagnosed

General
1

Hello,

Just wondering if anyone else feels as if they have been misdiagnosed. So I have been dealing with the extreme pain, trouble sleeping, ibs, weakness in legs, loss of balance, and trouble focusing and concentrating since 2009. Over time it has gotten wost and has caused me to suffer from depression and anxiety. I was finally diagnosed with fibromyalgia in 2015. I have tried different meds, therapies, and even counseling to help with this condition and nothing seems to help and over time all of my symptoms have gotten worse and my flare ups are lasting alot longer. I recently read an article that stated 2/3 people are misdiagnosed with fibromyalgia when something else may be the cause of their pain. Just wanted someone else prospective and also to see if I am the only one who has had no relief with pain and symptoms since being diagnosed??? Thanks in advance for your feedback!

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Very interesting! Is that an article you can share?
I’ve had lots of tests to see if it’s something else (Lyme, RA, lupus) and they all came back negative.
My symptoms are textbook fibro, so I’ve excepted that as my diagnosis, but would surely be open to something else, especially if that something came with a good treatment! I’ve also recently had the fm/a fibro blood test and scored 91/100. There are mixed professional opinions on that test, however.
Gentle hugs to you!:heart:

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I don’t know where you live, but here I went to a rheumatologist that did a complete work up. After about 25 vials of blood and tons of other stuff, I don’t have Rheumatoid arthritis. He did find a few things and determined what they were. I have Autoimmune Hepatitis, and he determined that it was one of the blips he saw in my testing. And the other one not Rheumatoid related did show up. After the typical jabs with"does this hurt?" I for sure have Fibromyalgia. I’m going to continue to see the doctor that diagnosed me. Rheumatologist said if it ain’t broke don’t fix it. (Imagine that in a strong Indian accent):face_with_hand_over_mouth:
So I think you should get a second opinion. No insult to your current doctor. Insurance usually covers second and sometimes third opinions. It’s better to be safe and not suffer from lack of knowledge.

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I’m in Atlanta. I stopped seeing the doctor that diagnosed me because he always made it seemed as if my pain and concerns weren’t valid. He also said that people with fibro want an excuse not to do things and that it wasn’t a real disability. I did find a rheumatologist that I like. However, i have been on every medicine commonly used to treat this condition and non of my symptoms have gotten any better. My memory and focus have gotten worse. My balance is off and my legs have gotten weaker. Headaches are more common. IBS, nausea, and cold sweats are happening more often. And my flare ups are lasting longer. All i gained was new side effects from the meds. I have been tested for all the conditions that mimic fibro all came back negative. I just feel in my heart that something else is causing my symptoms.

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https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.sciencedaily.com/releases/2019/02/190206091412.htm&ved=2ahUKEwiRh8Dgj9nkAhUECawKHTGqDmkQFjAJegQIAxAB&usg=AOvVaw2raOjky-PgkBiV-qkRt8dR&cshid=1568766828066

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Well there’s always another doctor. Perhaps an orthopedic surgeon. What’s funny is that my doctor is an orthopedic surgeon. And he is known as the one to see if you have Fibromyalgia. Make small talk to random people when you get out. I ran into someone at the TJ Maxx, another person I forget where in a waiting room I think. They knew my doctor and he was the go to doctor. This was just after I found him. So you might want to try and get a feel for the public opinion.
Perhaps you can see an endocrinologist. They take a different direction than a rheumatologist.
As for your previous doctor he will be surprised that Social Security recognizes Fibromyalgia as a legitimate disability.

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Hello proudmom
Mind if I ask what kind of doctor diagnosed your fibro?
Seenie from ModSupport

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I have the same problems as you, was diagnosed with fibromyalgia 1999. Last year a rheumatologist ran in depth labs to make sure it was not something else… I have no other conditions caused by immune system or other diseases treated by rheumatologists. Having trouble finding treatments that make you feel better is a trial and error routine. What works for one person may not work for thousands of others. All the conditions you mentioned I have too. I recently read 45 companion conditions are suffered by those suffering from fibro. To make it worse many of the meds used for fibro have severe side effects that affect mental function - such as Lyrica, gabapentin, most antidepressants. I started a new treatment protocol the end of July - after the first month I noticed a huge improvement for pain. I thought tackling the pain would be a huge step forward, it is sort of but all the other conditions have started getting worse - especially depression and anxiety.

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You might consider the possibility of MS. For me and now after four years one doctor says I have been misdiagnosed as having Fibromyalgia. Fibromyalgia and Multiple Sclerosis are so similar.
Sorry for your pain.

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One difference between fibro and ms is fibro would not show the brain lesions on an mri that ms would.

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Sounds like a thyroid problem. Be sure you have been tested. I have hypothyroidism.

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We see many people with rare diseases diagnosed incorrectly or not at all. Just because you go to a doctor who says “It’s X.” doesn’t mean it’s X. You have to keep looking until you find a doctor who says “It’s X and here’s why …” and (this is the important part) it makes sense to you. I don’t mean you like it, it just has to make sense.

Is that easy? Nope. But it’s worth it.

Seenie

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I’ve been having issues since the mid to late 1980s, after receiving a right side only breast implant to correct asymmetry from Poland’s Syndrome.

Chronic issues with severe FMS pain, fatigue, lethargy, brain fog, memory loss, blurring vision, headaches, heart palpitations, sinus, internal ear inflammation, severe dry eye, often smell burning smoke, shallow breathing, sleep apnea, insomnia, vertigo, painful sores on scalp, dark circles around eyes, inflammation, shooting pain and spasms in right breast, infertility, a vibrating, electrical surge in my chest and abdomen, back pain and spasms, right arm pain, foot pain, cramping, night sweats, numerous allergies to most foods, medicines, all NSAIDs, scents, newspaper and magazine ink, cleaning chemicals, etc. , (50+ symptoms in total); many started within 6 years after implant and gradually worsened over time.

Chronic Diagnoses over 35 years: TMJ, FMS, CFS, IBS, Degenerative Arthritis, Chronic Inflammation, Sjogren’s Syndrome, Phantosmia, Sinusitis, Depression, Anxiety, Vertigo, Myofascial Pain, Benign tumors on nose, back and uterus, Hiatal Hernia, Diverticulitis, Plantar Fasciitis, Carpal Tunnel Syndrome, Kidney Cancer, Chronic Kidney Disease, etc.

2004 Cervical Laminectomy in neck C5-7, due to Degenerative arthritis
2010 Total Hysterectomy due to fibroid tumor
May 2019 Total Nephrectomy of right kidney and 5.5cm Papillary Renal Cell Carcinoma tumor. Left kidney was at 43% at 3 month post op check up.
2019 Plan to finally get implant out!

Doctors swore all these years it couldn’t be the implant, but they were stumped on root cause(s). So they decided I was clinically depressed and plied me with antidepressants, muscle relaxers and pain meds. But I was bizarrely allergic to most everything.

Now we know my body has been going haywire rejecting the implant and being poisoned by the 40+ toxic chemicals and heavy metals in the implant shell alone.

And since the neck surgery never helped the chronic neck pain, my doctors believe the metal plate and screws may be adding to my neck pain.

A friend had plates and screws removed from her spine and her chronic pain disappeared.

Implants may not adversely affect everyone (so far…), but if you have them and have unexplained, seemingly unrelated issues, get them checked out by doctors WHO LISTEN TO YOU.

BTW Cadmium is known to cause the very rare cancer I was diagnosed with. Breast implant shells contain Cadmium, along with those other 40+ toxic chemicals and heavy metals…

Thousands of women, many with my same bizarre list of symptoms, see their issues improve to varying degrees or completely disappear after explant.

Russian roulette, anyone?

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Are you considering having the implants removed? Gentle hugs :heart:

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No, most likely not. I think truth is what will end up working or being most effective will be unique for each person. I, too have been to many specialists and through the gammet before being diagnosed. Not one thing is the solution. It’s combination and still will have flares and debilitating days even doing best. Most will respond and do well with flares here or there. Few will have much struggle actually functioning and getting the support or resources or even adequate help. Downside to fibromyalgia is that pain medications won’t be prescribed because research shows problematic and not effective management. No matter your pain level. It’s impossible to maintain life style you had. Truth is unless you can balance with diet, exercise and moderate med therapies not pain medication with new life style even accepting disability limits you will continue to find no solution or relief.
You can not push your way through this or expect a pain medication to help. It’s futile effort on your part.

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@Zoe06 Zoe06
Welcome to our Fibro support community. It’s great that you found us, but what a bummer it is that you’ve been diagnosed with this as well.
It’s great to see you posting: the best way of getting support is to share with your fellow members, and to reach out and give support to them.
We hope you will like it here!
All the best to you
Seenie from ModSupport

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Yes to everything, I’ve seen the same Rheumatologist for the last 2 and 1/2 years and he has never requested blood work. He relies on the results from the labs my Endo requests but those tests don’t include everything. Did you find out anything new since your post? Stay strong :heavy_heart_exclamation:

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Sorry to ask, but what are the textbook symptoms of Fibro? I didn’t know there was a blood test. I need to ask about that. Thanks for any info you can give me.

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Hi. I am new here. But, your story sounds a lot like mine with the IBS, pain, trouble sleeping and I am just now starting to have a little bit of the balance and concentration issues. I don’t take anything but my meds for anxiety and Advil. I don’t have anything to add, except that I do understand feeling misdiagnosed or that the doctor just diagnosed that because he/she doesn’t know what else is the issue. I wish you well.

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Have you ever gone to an ENT to see if you have POTS? Postural Orthostatic Syndrome? It can cause an array of symptoms. You may have Fibromyalgia but I always tell friends that if they develop more symptoms to not let a doctor just tell them it’s a Fibro symptom. They can become complacent, feel it’s all in our heads, or not bother to make sure something else hasn’t developed that the Fibro is covering up. I always thought my Fatigue was just my Fibro and CFS but it turns out I also have the Epstein Barr Virus. Be persistent with your doctor to take tests to make sure it’s not something more serious that they are missing.