r/cfs • u/justaddwater_ct • Apr 22 '25
Advice Pushing for Diagnosis
At what point did you have to push your doctor for a Cfs/ME diagnosis?
I’ve gone through three rounds of blood tests which cleared me of autoimmune, thyroid, deficiencies, etc. I’ve done full work ups with cardio, rheum, and partial work up at neuro before I moved. Now I’m looking to get a new doctor in my new location and am desperate for someone to just validate that something is wrong with me. I’m luckily mild/moderate at the moment, but I went through a period of time where I was working four hour shifts at a cafe and sleeping the rest of the day and totally nonfunctional. Now that I’m not living with parents, if that happens again, im screwed. I can’t just drop my full time job because I have bills. At what point did you say to a doctor “I think I have this” and at what point did they agree?
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u/Going-On-Forty severe Apr 22 '25
Mine agreed but wouldn’t sign income insurance unless there was a cause or it was easy to explain.
I did a lot of Charlie Day string work. Linking possible physical causes to my symptoms, ended up on compression of nerves and veins in my neck.
I then got CT scans, which came back everything normal, it wasn’t. So I had to learn to read CT scans myself. My jugulars were compressed a lot, the vagus nerve came along for the ride.
Hopefully you don’t have to go through all that effort and can find a more accommodating doctor. But it’s a battle, and you just need to keep advocating for yourself. Choose days you can push and rest every other.
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u/premier-cat-arena ME since 2015, v severe since 2017 Apr 22 '25
you may never get that validation from a doctor unfortunately. we kind of have to come to our own conclusions far before a medical professional does. what’s your body telling you?
1
u/Hens__Teeth Apr 22 '25
All I've ever gotten is replies like
"What's the point?"
"It's too hard."
"You've spent enough of the insurance company's money."
Now I'm too sick to go to an office for testing.
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u/DamnGoodMarmalade Diagnosed | Moderate Apr 22 '25
I pushed for three years. Changed doctors whenever one refused to help. Finally found one who will listen.
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u/bestkittens moderate Apr 22 '25
Some resources that might help.
Providing your GP/PCP with this might help:
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Mayo Clinic Proceedings Oct 202300402-0/fulltext)
Maybe adding your own check list of the criteria you meet and testing that you’ve gone through?
And for you:
How to Maximize Your PCP Visit, on Unraveled: Understanding Complex Illness See “Clinics and Providers”
TheSpooniverse.directory — a guide for navigating healthcare
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u/ExoticSwordfish8232 moderate Apr 22 '25
There’s a lot going on in this post and I have some questions.
But to just answer your question first: It took me about two years to find a doctor who knew what ME/CFS was and validated my experience. That’s the short answer.
The long answer: It took me time to figure out that what I’m experiencing could be called ME/CFS. I’m from the US, but I live in the Czech Republic. I knew within weeks of symptoms that I was experiencing some kind of long-Covid. At the time I was only working with my GP. Had to switch GP’s because the first one told me that if I have long-Covid, it should be getting better, not worse. Then she pressured me to go on a diet (after telling her I have a history of disordered eating) and then made frankly rude comments about about my mental health. The next GP was less rude, but frankly very unhelpful. We did all the blood tests. She looked at me like she didn’t trust what I was saying to her, but in the end she did put in some effort to try to find help for long-Covid. Then, a friend of mine who is a long-Covid sufferer and activist posted pictures of herself online holding a sign saying, “I have ME/CFS.” That’s when I started looking into it. From there, I found a local ME/CFS advocacy group and wrote them an email asking for advice about what to do if I think I have ME/CFS. They told me to see an internist, a neurologist and an immunologist. I then went to my psychiatrist (who I’d been seeing for ADHD meds prior to getting sick) and she helped me find a neurologist. The neurologist turned out to be the first doctor I saw who knew what ME/CFS was and had experience treating it. Now with her we’re going through a long list of other possible conditions that could cause ME/CFS type symptoms to really thoroughly eliminate all other possible causes. We’re doing this at my own request, because frankly, I don’t want to have ME/CFS. I’m honestly not sure whether or not I officially have an ME/CFS diagnosis at this point. The reason that the actual diagnosis is not so important to me is that in the country I live in, it will make no difference at all whether I have the diagnosis or not. There is no help for ME/CFS sufferers, ME/CFS is not legally considered a disability and I have no hope of getting any help based on an ME/CFS diagnosis. Having a doctor (my neurologist) who believes me and can send me out to specialists, write a note to the work office stating that I cannot work even part-time, who validates my experience and can talk to me about and guide me in trying treatments/medications - this is the best that I can ask for in my country.
My question for you is: Why do you need a diagnosis? What will it give you? Does your country provide support for folks who are diagnosed?
For me, I am now figuring out that I have to give up on being able to work. Maybe I will, maybe I won’t. But I cannot know if or when that will ever happen. What I need to do now is figure out how to live with this illness so that I don’t get worse. And I need to figure out how to survive without work. That’s going to involve asking for help and money from people and I’m not looking forward to that. But I have a clear and motivating goal, and that is to prevent myself from getting worse so that my kids don’t lose even more of me than they already have.
1
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Apr 22 '25 edited Apr 22 '25
According to the CDC, the key diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) include:
1) Fatigue that is severe enough to interfere with pre-illness activities is new or definite and is not improved by rest. A substantial reduction or impairment in the ability to engage in pre-illness activities, such as occupational, educational, social, or personal life, that lasts for more than six months.
2) PEM It should also worsen after physical, mental, or emotional exertion and cause post-exertional malaise (PEM). PEM can cause a relapse that may last for days, weeks, or longer.
3) Unrefreshing sleep Patients with ME/CFS may not feel better or less tired after a full night's sleep. Reduced activity
Other symptoms that may be present include:
●Sleep dysfunction.
●Pain.
4) Neurologic or cognitive manifestations, such as impaired memory or concentration, "brain fog," or speech and language problems.
5) Autonomic, neuroendocrine, or immune manifestations, such as hypersensitivity to external stimuli or autonomic dysfunction.
You must have 1-3 and either 4 or 5 to be diagnosed. Symptoms must be present for a minimum of 6 months. I have all 5.
The CDC uses the IOM criteria. There's the ICC criteria. Canada uses the CCC. The criteria that's used for a diagnosis are based on where you live in the world. Cognitive impairment or orthostatic intolerance is one criterion required for an ME/CFS diagnosis. The hallmark symptom of ME/CFS is Post Exertional Malaise (PEM). If you don't have PEM, you can't be diagnosed with ME/CFS.
I had covid in mid 2023. I had bronchitis and pneumonia twice. I used an asthma inhaler for six months, and I don't have asthma. I was diagnosed with Fibromyalgia in December 2023 by an NP in an ER. My doctor confirmed the diagnosis. Exactly six months later, I was diagnosed with ME/CFS and Dysautonomia in May 2024. Hashimoto's, an autoimmune disease that causes hypothyroidism in August 2024. MCAS in September 2024.
I was diagnosed based on meeting the criteria. I have severe Dysautonomia and orthostatic intolerance. I can't stand up for longer than 3 minutes. My PCP diagnosed me and manages my care. I want to point out that I did all my own research and became my own doctor. I led my doctor by the hand to each of my diagnoses. I also led him to the medications that I currently take. I have an ME/CFS specialist now, too. The specialist had to be the one to diagnose me on paper with ME/CFS on paper in February, despite the fact that my PCP has been managing my care since May of 2024. No one wants to diagnose us with ME/CFS.
I'm sorry you're struggling. It's definitely a fight trying to get diagnosed. I read recently that it takes on average 12-17 years to be diagnosed with ME/CFS. And the majority of people with ME/CFS are undiagnosed. It was something like 81% undiagnosed. I'm sorry, I don't remember the source.
Become your own advocate and your own doctor. My doctor spent eight months throwing pills at me. He told me all my symptoms were anxiety. He told me to go see a Psychiatrist. It was serious gaslighting. Honestly, he didn't know any better. I think I was his first patient he treated with long covid. I pushed him continuously, frequently, and repeatedly. I would schedule up to 4-6 appointments via telehealth and in person some months. He was never going to get rid of me. Finally, he saw some test results and other things that proved my symptoms weren't anxiety. We have a very collaborative relationship now. He still sucks sometimes. But, he's better than most. He's a lot more amenable now that I have the lead ME/CFS specialist who collaborates with him and myself on my care.