Feel like you are on an endless and epic battle to get a diagnosis? You are not alone. Great stories and strategies on how to get diagnosed.
You can also find lists of doctors and important documents to print and share with your doctor here: How to Get Diagnosed with ME and CFS
After seeing multiple doctors who had no clue what was wrong with me, I researched my symptoms on-line and figured out that I likely had ME/CFS, I made an appointment with a ME/CFS specialist and he diagnosed me just eight months after symptom onset. Persistence is key!
After 9 years of illness, consulting with 32 health professionals of every ilk imaginable, and spending thousands of dollars to be told that there was nothing “physically” wrong with me, I got my first diagnosis from a book that a friend bought me for 25 cents at the flea market. It was Multiple Chemical Sensitivities.
A few years later, after a gigantic crash, I bought another book about Chronic Fatigue Syndrome, but I was not convinced that could have been my disease.
Finally in 2010, after joining the Phoenix Rising forum, I figured out I had ME. By then I had consulted with a total of 131 health practitioners. Only one had been significantly helpful and he died of cancer in 2015.
I had so many erroneous (and expensive!!!) diagnoses that after about a year I gave up on the medical industry altogether.
I bought a one-month membership to an online library of medical journals and learned all I could. At first, I think I was really just looking for validation that I wasn’t imagining this. I was in search of label for the disease in order to manage “public relations.” I found the International Consensus Criteria for Myalgic Encephalomyelitis definition really helpful because I fit the description precisely.
I decided it would be worth taking some steps like withdrawing from most of society (no energy for it), paying more attention to vagal tone, managing stress, engaging in very delicate activity on a measured basis, and most of all – not focusing on how sick I was.
Instead I am focusing on the joys I can still experience. And I have made significant, but slow, progress over the last two years. This makes me the ultimate DIYer – “Diagnose It Yourself.”
I got referred to lots of specialists, who found a mountain of fuck-all wrong with me, but I knew there was something really wrong, so I was trying to figure it out myself.
I’d gotten in the habit of requesting all my records in a bulk lot once a year and going through them looking for clues.
One day, in my yearly records-dump, I just found Chronic Fatigue Syndrome newly listed on my official “problems list” and there’s one visit-note from a doctor I had fired months earlier that simply mentions that diagnostic code. But there’s no narrative explanation for why she decided to use that code.
I have no idea HOW she arrived at that diagnosis. I suspect that if she gave it any thought at all, the thought was something like “Maybe this’ll shut her up since there’s no treatment and no cure anyway.”
I was misdiagnosed for 35 years by 50 doctors. Then I went to a Lyme meeting that encouraged people with CFS and Fibromyalgia to attend. When the main speaker talked, I kept saying, “I’ve got that symptom” over and over.
He talked about the IGENEX specialty lab for Lyme, and I took a form home with me and brought it to my doctor. It came back to CDC positive, so I was added to Iowa’s CDC state statistics. My local clinic also me for Lyme, sending it to Mayo clinic. It came back negative.
I highly recommend the IGENEX test. Go to their website and look about the various testing available. If you are on Medicare, it is covered. You may have problems getting your regular doctor to order this test for you.
I had problems getting them to order the IGENEX test for my husband. He was having dementia causing visual and violent hallucinations.
His brain autopsy showed he had Lyme.
I have had chronic illness for 27 years. I was originally diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. Over the years, doctors have given me various other diagnoses – including Fibromyalgia and Postural Tachycardia Syndrome. None of these fully explained my illness.
When I found the International Consensus Criteria, I had an “aha” moment. It described exactly what I’ve experienced.
I saw lots of doctors. As a last resort, I went to a local infectious disease doctor who was in his early 30s. He recognized it right away and gave me the diagnosis and then said he did not know how to help me or even how to help me find help.
That got me started and, within a year, I had an appointment and was evaluated and started treatment with an doctor who specialized in ME.
Laura Vigiano’s Story
I had a very difficult time getting diagnosed when I got sick in 2007. Because no medical test showed anything was wrong, doctors treated me like a malingering hypochondriac. In the beginning, when I was still trying to keep my job, I needed a doctor’s note to excuse my months absent from work. Doctors didn’t believe I was sick so they would fire me from their practice. I limped along like this going from doctor to doctor for years.
A rheumatologist should be able to diagnose CFS, but the rheumatologist I was referred to told me CFS was a “made up diagnosis for a bunch of lazy housewives in Nevada.”
After I went to Mayo Clinic (the internist there diagnosed me again with “depression”), I read the symptoms for Chronic Fatigue Syndrome on Mayo Clinic’s website. I had 28 of the symptoms. That’s when I knew I had CFS.
Finally, I went to Dr. Nancy Klimas’ clinic for CFS and Gulf War Syndrome in Miami. Dr. Maria Vera Nunez confirmed I had CFS. I still can’t find a doctor in Sarasota who knows anything about CFS, but the doctor I have now at least believes it is a real illness.
Years later, I found out that a different rheumatologist did diagnose me with CFS in 2008. He did not tell me that’s the diagnosis he gave me, nor did he explain CFS to me.
My regular doctor suggested CFS when my “mononucleosis” was no better after several months. Since then, we have done testing, but it hasn’t turned up anything. I have also been diagnosed with Fibromyalgia.
No regular or specialist doctor would formally diagnose me as that wasn’t their “area of expertise” (they were covering their asses and staying off record). The head of Tufts Infectious disease department said he suspected CFS/ME but wouldn’t officially give me that diagnosis. Even the functional med doc was recalcitrant about going on record but he saw how many doctors I had been to and caved to help me out with my disability paperwork.
It is a diagnosis of exclusion so start with a really good infectious disease doctor to rule out everything else. Then go to a sleep doctor and get any sleep problems fixed. Then possibly an endo to get hormones adjusted if necessary. Once that is done you have to find either a CFS/ME doctor or a functional medicine doctor to get the actual diagnosis.
In the UK, I was diagnosed by the Chronic Fatigue/ME service here. Then by my doctor.
I only had to go through two doctors. A rheumatologist diagnosed me with Fibromylagia. I thought it was more complicated than that and went to see an Immunologist. I was diagnosed then.
Every doctor thought I was nuts. Regular doctors thought that POTS was anxiety, which is ridiculous. Now I have testing that proves it from a neurologist. Primary care physicians thought that my chronic fatigue syndrome was depression. But you don’t get post exertional malaise with depression.
I want to Mayo Clinic they listed one of my diagnosis as “chronic fatigue” and suggested I go to a doctor who treats Chronic Fatigue Syndrome, which I can’t see because they are a bit too far away. I had to travel twice out-of-state to get a diagnosis, and unfortunately I am unable to travel at this point, so I’m not sure if I’ll be able to go back again.
I was diagnosed by my primary care doc 1995, after lots of tests to rule other things out. Exercise exacerbated my chronic fatigue, and they found antibodies to Epstien Barr Virus.
The doc said: “This is what I think you have. I cant help you with it and I don’t know anyone who can.”
I was so damned sick and tired for weeks on end. My internist said I was depressed and put me on Zoloft. I explained to him that I was most certainly not depressed.
Since I was a healthcare professional and part of my job included reading research papers, I came upon some papers related to ‘chronic fatigue syndrome.’ I had by then realized that my symptoms were absolutely not psychological and it was not normal to have a blood pressure of 80/50 or lower and feel like I was always about to pass out… oh, and I was falling due to vertigo.
I diagnosed myself. I went to my internist and told him what I had. He referred me to a rheumatologist at the Cleveland Clinic, whereupon the rheumatologist ran some tests and reported that my thyroid was hypo and I had chronic fatigue syndrome and fibromyalgia. It was a diagnosis of exclusion. The process of diagnosis took about 6 months from the day I first reported to internist my symptoms, to the time the rheumatologist diagnosed me.
The rheumatologist told me there was no cure, but that I should do aerobics and he gave me a psych referral. The only thing he was able to treat was my off-the-charts pain. Nowadays, I doubt he would be able to prescribe anything helpful at all.
Now I stay in bed most of the time due to dizziness and pain. I learned about antivirals when I came on Facebook. I’m also on LDN which does help.
Also check for Lyme Disease and CIRS (Mold Disease). I was told I had Chronic Fatigue Syndrome, and then found I actually had these. The symptoms are similar to CFS. Please, please check.
I went to a rheumatologist who basically performed a bunch of tests to rule out anything else it could be. When they all came back negative, he said “looks like CFS and the only real treatment is a stimulant like Ritalin.” I was already prescribed that by my psychiatrist for “low energy and focus issues” which were probably all from the CFS to begin with!
In the past, I would go to the doctor with an infection and give only some of the symptoms. Finally, I went to the local general practitioner and gave her all my symptoms, instead of just naming the one’s troubling me at that time.
She suspected CFS, but said that there is no treatment. When I researched it myself, I realized that her suspicions were correct. Now I use MSM ( Methylsulphonylmethane) for my symptoms and feel much better.
I went home and researched the symptoms and had every single one, so I printed off a checklist, highlighted every symptom I had, and faxed it back to my doctor, who finally referred me to a specialist. I think I was lucky to see a trainee doctor who was keen to find a solution for me.
My illness started after a severe infection Thanksgiving of 2013. By January, I could no longer get out of bed, crawling to the bathroom, burning joints, fevers, profuse night sweats, my cognitive function was so badly altered, I thought the worst.
I went from doctor to doctor. Infectious disease doctor, oncologist, PET scan, rheumatology. This went on for about 9 months… I wasn’t getting any better. I attempted to return to work and literally was at the doctor every week with an infection, sinus, upper respiratory, UTI’s, exhaustion… I was missing excessive amounts of work and burning through FMLA time.
I was told by my primary physician that I needed to see a shrink. The shrink evaluated me and said, ” you aren’t crazy… you are SICK”. They plied me with Ritalin and antibiotics. I went on a weekend trip to Chicago and ended up in the hospital for 6 days because I collapsed when I came home. Everyone agreed something was very wrong but they didn’t know what.
I was called “attention seeking” and accused of not wanting to go to work (I was a workaholic before this) and again told I needed to see a therapist.
Then someone in a support group said to see Dr. Lerner. He looked at some of my labs and tests. He was appalled at how I was treated and ran his own labs. He told me I have 3 viruses and that I am very very sick and probably one of the (EBV, CMV and HHV6) sickest he’s seen. I cried. Not because I was sick so much but because finally there was a reason for all of this and I wasn’t lazy or crazy or seeking attention.
My advice to anyone who “knows” something is very wrong: LISTEN to your body. Be your own best advocate. Research your symptoms, and insist on the tests and they run them! Do not give up.
This disease has taken a lot from me… My livelihood, my dreams, friends, at times my dignity…. I am a person of action and I need to know why and how this can be fixed…. at times the biggest frustration is the fact that right now… this cannot be fixed. But, I am hopeful we are turning a corner now and that validation, a way to manage our disease and a huge apology from everyone who ignored us all these years is coming.
I’ve been suffering with CFS for way over 10 years. My general practitioner didn’t say anything. It wasn’t until I saw a lovely lady at hospital, who told me (after 10 minutes!) that I had CFS.
Always get a second and third opinion. A lot of doctors don’t want to know when it comes to CFS, because there is nothing they can do.
I kept on getting flu (5 times in 6 months). Work was not impressed the 6th time. I said to my doctor, “Why do I get flu every month? Why do I get heavily fatigued, constant headaches and flu symptoms?” He then put two and two together and referred me to a specialist. It took 7 months to diagnose me.
25 years ago, a doctor had me keep a journal of how I felt day-to-day and simply diagnosed me from that. Also, my birth mother had already been diagnosed, so I’m sure that led her to diagnosing me as well.
Anna Mina Emuna’s Story
I was diagnosed relatively fast with Fibromyalgia, Lupus, cardiac arrhythmia, and ME/CFS. However, I was left with no explanation. So I went seeking out alternative, environmental medicine and an allergy specialist. I found out I have a few positives for Borrelia Burgdorferi (lyme), plus Mast Cell Activation Disorder, Degenerative Disc Disease, Celiac Disease, and Auto-Immune Disease. 35 years later I found out I also have Hypermobile Ehlers Danlos Syndrome.
I was a 1988 Fort Collins Colorado cluster case. Suddenly one day I just could not get out of bed and get showered and get to work. Back then it was called “yuppie flu.”
I was misdiagnosed and treated for sinus headache. I tested EBV, which had high titers, so it was called CEBV. Then a different doctor gave me a medicine in low dose for brain fog and said despite my exhaustion the key to improving is exercise, but to never go past being what I termed “whelmed.” It took weeks to attempt a stroll. That lead to a long, fun recovery with several relapses, but each one was not as big a crash as before.
Thanks for Reading
🌷 This page is part of the free online guide: How To Save Spoons: A Self-Advocacy Guide for ME/CFS
🌷 Page Updated: 8/1/19
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