Although fibromyalgia has its own unique set of diagnostic criteria, many symptoms of fibro may mimic other illnesses. Symptoms such as chronic pain, fatigue or brain fog are common among many chronic illnesses – and in some cases, they can even be a sign of mental illness or acute physical illness. Fibromyalgia doesn’t have one “look,” and it isn’t always obvious when a person has the condition.
For that reason, as well as it still not being well recognized, fibromyalgia may often be misdiagnosed as another health condition. It can take weeks, months or even years before a patient and doctor are able to put the pieces together and accurately diagnose fibro.
If you are struggling with your health – whether you’re undiagnosed or feel you’ve been misdiagnosed – it can sometimes be helpful to talk with others who have experienced similar symptoms or received the same diagnosis, so that you can ask your doctor questions and have a productive conversation with your medical team. That’s why we asked those in our Mighty community who have been diagnosed with fibromyalgia if they were initially misdiagnosed with another condition. If any of the following experiences sound familiar, hopefully it can either be helpful to you in your health journey or remind you that you’re not alone.
Here’s what our community shared with us:
“Took the treatment for multiple sclerosis for a year, $1800 a month, injections every three days. Then my new neurologist (the one who diagnosed me with MS and put me on treatment was on maternity leave) said, ‘The treatment doesn’t work and I know why. You just don’t have MS.’ The fibromyalgia was actually diagnosed by my rheumatologist about two years later.” – Melanie C.
“Post-natal depression twice.” – Kirsty R.
“Oddly, I was misdiagnosed with gastric flu. A back and neck injury triggered my fibromyalgia. Along with the intense pain it also caused gastric problems and extreme dizziness, I’m not sure why. I knew something was very wrong but every time I returned to the doctors they told me I had a bad case of gastric flu and I just needed to rest.” – Jo M.
“Depression, and everything else was unconfirmed but I tested for so many things over many years.” – Katie J.
“Complex regional pain syndrome. Then I saw a physician who asked me three questions and shook her head and said, ‘Clearly no one’s listened to you. You have no signs of CRPS.’ Three tears later and bam — fibro diagnosis.” – Zoie S.
“I think everyone who is young can understand this one: Growing pains that lasted too long. The signs that ultimately helped us realize it wasn’t growing pains was… well, I was 17 and if I was getting growing pains at that time there would be a lot of other issues.” – Paige W.
“Rheumatoid arthritis. Turns out the medication didn’t work. Diagnosed with fibromyalgia a year later.” – Nakisha M.A.
“IBS, depression, chronic pain, endometriosis, anxiety, insomnia, (neck strain) actually was degenerative disc disease, arthritis, hypoglycemia, chronic fatigue syndrome… there’s more. I do actually have these, but it literally took 20 years to put it all together as symptoms and not separate illnesses. They together plus some other diagnoses are related to my autoimmune disease and fibromyalgia. Always ask your family doctor to look at everything as a whole. You can’t get proper treatment if your main illness is being ignored.” – Tea M.
“Hypochondria.” – Alexia M.
“I was diagnosed at 16 with pain amplification syndrome before I was finally diagnosed with fibromyalgia at 21. I personally believe that they didn’t want to give me the true diagnosis at 16 because ‘I was so young’ and wasn’t exhibiting enough pain symptoms even though I was extremely fatigued and sensitive to any pressure put on my skin.” – Celeste R.
“They thought I had lupus (got tested twice for it). Turns out it was fibromyalgia and MS.” – Melissa H.
“I was so sick with body aches, pains, fever and a high white blood count, that one of the oncology doctors I worked with thought I had lymphoma. A bowel biopsy finally showed I had a parasite and yeast overgrowth. My fabulous GI doctor figured out on top of that, it was chronic fatigue syndrome and fibromyalgia. It took about six months to sort it out. If I’d listened to the first doctor I went to, who knows how long it would have been before a diagnosis? Being an RN, in this case, saved me from the doctors who just wanted to dismiss another overweight patient with hard to diagnose complaints.” – Colleen S.
“I got misdiagnosed with pre diabetes. I’ve never been overweight. My diet was fine. My symptoms got progressively worse no matter what I did. The severe body aches were the biggest red flag. An endocrinologist confirmed that I had been misdiagnosed.” – Jess N.
“I was told I had muscle inflammation at age 16.” – Kirsty S.
“I was first told it was all growing pains and I’d get over as I’d age. Then I was told that it was all in my head, depression and so on, so if I’d fix that it would fix everything. Then I got told I had possible lupus, and then chronic pain syndrome. And finally fibromyalgia.” – Faith M.
reference:15 Conditions People With Fibromyalgia Were Misdiagnosed With