Doctor doesn't want to give official diagnosis

[frecklebean]

I believe I have suffered from chronic fatigue syndrome for the past seven years, but my doctor doesn't seem to want to diagnose me. Here's my story:

When I was 20, I was diagnosed with celiac disease (a diagnosis I also really had to fight for). I had been working in a bakery (front-of-house only, serving customers) since age 16 and was always sort of vaguely ill-ish. But then, at age 20, I moved to the kitchen of the bakery and started baking. Over a period of about seven-ish months I became shockingly ill.

I'm sure this will be familiar to all of you... I lost WAY more weight than I could afford to, I lost all of my friends (I was far too exhausted to socialize), all of my hobbies - my life was reduced to the bare minimum. My routine was: drag myself out of bed at 4am feeling awful, work from 5am-1pm (I would hit a wall at 10am every day and just make it to 1pm through sheer determination). I would have to take a 45-60 minute nap at work so I could drive home. At home, I would go straight to bed (or I'd try to read, which would put me to sleep within seconds), wake up to eat something for supper and then go straight back to sleep. I could barely think. Everything was foggy. It felt like my brain was frozen... you know the feeling your face gets when it's really cold and your mouth and chin muscles don't work properly? It felt like that, but more so. Once I caused a car accident because I just stopped being able to process what was going on, which was terrifying. I also remember that my blood sugar would bottom out like *that*. I had to have food on me at all times because I could go from fine to having a hypoglycaemic attack within literally one minute.

After I quit my job, I went on disability for a couple of months and just slept constantly. After that, I started working about 10-15 hours a week, as a professor's admin assistant. I certainly got better from my "rock bottom" but I have never felt that relief that seems so common to celiac patients... "After going gluten-free, it was like night and day! My brain feels clearer and I have so much energy!" Instead, for me, the last seven years have been marked by periods of trying to do things I used to be able to do, overworking myself, and crashing.

Right now, I have what seem to be clearly CFS symptoms: a clear bill of health from my doctor, extreme fatigue including post-exertional malaise of 1-2 days (both exercise/work and too much mental stimulation), joint pain with no swelling, chronic neck/shoulder/head pain, unrefreshing sleep, brain fog, what else, I can't remember haha!

I went to see my doctor, and he said, "Everyone's fatigued! If I had a cure, I'd be a rich man!" Which, I understand there's no cure for CFS. But after feeling like shit and wondering if *I* was the problem for seven years, I just want a diagnosis for why I feel this way. He does seem understanding when I tell him that exercise makes things worse, not better, but he doesn't seem to want to come right out and say he thinks I have CFS.

Has anyone on here experienced this? What can I do (I live in Quebec)? Do you think I might be wrong and not fit the bill for CFS?

 

[Cheesus]

So what has your doctor said about ME/CFS specifically? Are they doing other investigations?

 

[Kati]

I believe I have suffered from chronic fatigue syndrome for the past seven years, but my doctor doesn't seem to want to diagnose me. Here's my story:

When I was 20, I was diagnosed with celiac disease (a diagnosis I also really had to fight for). I had been working in a bakery (front-of-house only, serving customers) since age 16 and was always sort of vaguely ill-ish. But then, at age 20, I moved to the kitchen of the bakery and started baking. Over a period of about seven-ish months I became shockingly ill.

I'm sure this will be familiar to all of you... I lost WAY more weight than I could afford to, I lost all of my friends (I was far too exhausted to socialize), all of my hobbies - my life was reduced to the bare minimum. My routine was: drag myself out of bed at 4am feeling awful, work from 5am-1pm (I would hit a wall at 10am every day and just make it to 1pm through sheer determination). I would have to take a 45-60 minute nap at work so I could drive home. At home, I would go straight to bed (or I'd try to read, which would put me to sleep within seconds), wake up to eat something for supper and then go straight back to sleep. I could barely think. Everything was foggy. It felt like my brain was frozen... you know the feeling your face gets when it's really cold and your mouth and chin muscles don't work properly? It felt like that, but more so. Once I caused a car accident because I just stopped being able to process what was going on, which was terrifying. I also remember that my blood sugar would bottom out like *that*. I had to have food on me at all times because I could go from fine to having a hypoglycaemic attack within literally one minute.

After I quit my job, I went on disability for a couple of months and just slept constantly. After that, I started working about 10-15 hours a week, as a professor's admin assistant. I certainly got better from my "rock bottom" but I have never felt that relief that seems so common to celiac patients... "After going gluten-free, it was like night and day! My brain feels clearer and I have so much energy!" Instead, for me, the last seven years have been marked by periods of trying to do things I used to be able to do, overworking myself, and crashing.

Right now, I have what seem to be clearly CFS symptoms: a clear bill of health from my doctor, extreme fatigue including post-exertional malaise of 1-2 days (both exercise/work and too much mental stimulation), joint pain with no swelling, chronic neck/shoulder/head pain, unrefreshing sleep, brain fog, what else, I can't remember haha!

I went to see my doctor, and he said, "Everyone's fatigued! If I had a cure, I'd be a rich man!" Which, I understand there's no cure for CFS. But after feeling like shit and wondering if *I* was the problem for seven years, I just want a diagnosis for why I feel this way. He does seem understanding when I tell him that exercise makes things worse, not better, but he doesn't seem to want to come right out and say he thinks I have CFS.

Has anyone on here experienced this? What can I do (I live in Quebec)? Do you think I might be wrong and not fit the bill for CFS?

Hi @frecklebean welcome to the forum. Please contact AQEM (association Quebecoise de l'encephalomyelite myalgique) for a recommendation of a physician knowledgeable. There is also a facebook support group for francophones if you are interested (if you speak french, of course!), send me a private message if interested

Best wishes

 

[frecklebean]

@Cheesus Well, neither one of us has come out and said the words ME/CFS. I went to him complaining of extreme fatigue (etc), and he ordered a whole pile of bloodwork, but said "if this comes back clean there's nothing I can do."

It WAS clean, so I went back and he said, "honestly, the only thing that will make this better is exercise." I told him that exercise makes it worse, which he seemed to be expecting me to say. Then he said he would try me on a month of 10mg amitryptyline to see if it's a problem with sleep quality. I can't tell if it helped because I also had to quit my job at the same time (due to fatigue), so I've noticed I have been feeling a little better, (although not BETTER) since then. I'm just off the amitryptyline now and not noticing a change, so I think it was lightening my load that calmed down my symptoms a bit.

I have another appointment to see him next week. I'm scared to say outright "I think I have CFS" because I worry he will think I'm an armchair diagnostician and totally dismiss me. Or think I'm trolling for diagnoses and that I'm just neurotic or something. But I also don't want him to just say "yeah you have fatigue problems and I can't do anything about it" and leave it at that...

 

[Invisible Woman]

Hi @frecklebean . Welcome to PR.

Symptoms being exacerbated by exercise, for some of us it can be after cognitive effort too, is pretty typical of ME. You'll find lots of useful information about pacing yourself to try to avoid triggering this on the forums. Pacing is a way of managing your energy and symptoms as opposed to PACE which is a now debunked treatment trial still being pushed by the UK medical establishment.

I don't know where you are, but in the UK the ME Association has the "Purple Book", this is for both patients, carers and docs and lists tests and alternative diagnosis that should be considered before diagnosing a person with ME. If you are in the UK I would definitely recommend getting a copy of that.

Some docs are slow to give a diagnosis and there are a few reasons: some good some bad. ME is still currently a diagnosis of exclusion (hopefully this will change soon) so it may be your doc wants to rule other things out first.

There are loads of very helpful and knowledgeable folk here with a wide range of other health problems to go with ME so I'm sure you'll find plenty of useful info.

edited to note that this crossed posts with the post above...

 

[IThinkImTurningJapanese]

I'm scared to say outright "I think I have CFS" because I worry he will think I'm an armchair diagnostician and totally dismiss me.

Don't play this game, it's your body and your life.

You are the one who must live with the consequences, not him.

 

[Jonathan Edwards]

I have another appointment to see him next week. I'm scared to say outright "I think I have CFS" because I worry he will think I'm an armchair diagnostician and totally dismiss me. Or think I'm trolling for diagnoses and that I'm just neurotic or something. But I also don't want him to just say "yeah you have fatigue problems and I can't do anything about it" and leave it at that...

What exactly are you hoping for, frecklebean? I did not use the terms ME or CFS when I practiced but I tried my best to do what I could for people who might be given that diagnosis. The honest truth is that there is no specific treatment that we know has benefit. Doing nothing more may be a good way to avoid referral to clinics where all sorts of useless therapies may be recommended.

I really do not know whether or not we should call CFS an 'official diagnosis' since we know so little about it. I think there is a clearly recognisable clinical problem we call ME/CFS but I doubt it is a single 'disease'.

 

[A.B.]

Do you think I might be wrong and not fit the bill for CFS?

It sounds a lot like CFS.

Although one obvious question is whether you really are 100% gluten free. Gluten can hide in all sorts of unexpected foods. Sorry for saying what is most likely obvious to you.

Having a diagnosis means little in practice. It might make you feel less alone. At some level it's an acknowledgement that things aren't right with your health and acknowleding reality is a good thing.

 

[Tunguska]

The other guys are right, the diagnosis in canada is utterly worthless unless you have a physician to support it. They did the opposite to me and gave me every hope I was on the right track, but after diagnosis all I got was a referral to the psychology department.

 

[Cheesus]

I agree with most of the sentiments here. Having said that, a formal diagnosis will be useful if you need to apply for disability benefits.

 

[Alvin2]

Hi @frecklebean welcome to the forum. Please contact AQEM (association Quebecoise de l'encephalomyelite myalgique) for a recommendation of a physician knowledgeable.

Do this, ask your doctor for a referral to one of the experts who can diagnose you. Once your doc gets the report with the diagnosis he will take it more seriously because its not the patient giving a diagnosis its a medical professional.

 

[mrquasar]

The honest truth is that there is no specific treatment that we know has benefit. Doing nothing more may be a good way to avoid referral to clinics where all sorts of useless therapies may be recommended.

This is the stark truth we must face currently. As much as we wish doctors could help us, as much as we long for a test or a treatment, it simply does not exist at present.

You could have the most understanding and educated doctor in the world, and they'd still have no sure-fire test to diagnose you with ME/CFS or treatment to prescribe that would have a better-than-chance probability of getting you better.

 

[Aroa]

Hi and welcome @frecklebean !!!!

First it is important that doctors rule out other diseases

Although there are no markers, symptoms are a good way to get a diagnosis from a knowledgeable ME physician. (hopefully we may have biomarkers this year )

There are no specific treatments, but there are things that may improve your quality of life. So going to the right physician is very important IMO.

Good luck !!!!

 

[Kati]

@Cheesus Well, neither one of us has come out and said the words ME/CFS. I went to him complaining of extreme fatigue (etc), and he ordered a whole pile of bloodwork, but said "if this comes back clean there's nothing I can do."

It WAS clean, so I went back and he said, "honestly, the only thing that will make this better is exercise." I told him that exercise makes it worse, which he seemed to be expecting me to say. Then he said he would try me on a month of 10mg amitryptyline to see if it's a problem with sleep quality. I can't tell if it helped because I also had to quit my job at the same time (due to fatigue), so I've noticed I have been feeling a little better, (although not BETTER) since then. I'm just off the amitryptyline now and not noticing a change, so I think it was lightening my load that calmed down my symptoms a bit.

I have another appointment to see him next week. I'm scared to say outright "I think I have CFS" because I worry he will think I'm an armchair diagnostician and totally dismiss me. Or think I'm trolling for diagnoses and that I'm just neurotic or something. But I also don't want him to just say "yeah you have fatigue problems and I can't do anything about it" and leave it at that...

Hi @frecklebean so sorry you quit your job. Could you have been entitled to disability benefits? How do you sustain yourself?

And of course stopping work makes you feel better. Any kind of work is aggravating for patients with ME. Unfortunately it doesn't mean you are cured. I hope your dr understands that.

I understand your need for validation and need for getting a diagnosis. Your dr needs to know you stopped working and that what you have affects your life this much.

I still suggest you get referred to someone who sees patients with ME and aware of diagnosis criteria and will know what needs to be ruled out.

 

[alex3619]

Doing nothing more may be a good way to avoid referral to clinics where all sorts of useless therapies may be recommended.

As I see it there are three reasons why a doctor might not diagnose ME or CFS -
1. They do not know enough about it.
2. They either do not believe in it or believe its psychosomatic.
3. They are concerned the diagnosis itself is too problematic and the patient might be worse off. This is often a very valid concern.

If we had a diagnostic test or effective treatments then this concern will slowly go away for most medical practitioners. I have no problem with a doctor who is trying to help, is communicating well with a patient, who knows something about the disorder and is open to new information, but who is not offering a diagnosis or treatment other than palliative. As the science advances these are the doctors who will reliably use the new science to help their patients.

 

[Kati]

However not getting a diagnosis can be detrimental to the well-being of the patient, financially, emotionally and mentally.

Patient who is being told they are simply tired, to sleep more and exercise more is not an acceptable answer when someone has been sick for years.

Instead the patient is left in limbo with no ressources.

Receiving a diagnosis means recognition and knowledge that somehing is wrong. It means that the doctor has sufficient knowledge to recognize the illness and it means that the patient can seek out support and seek out ressources in the community or on the internet).

A diagnosis also represents validation that the symptoms are real and not imagined.

Being believed goes a long long way with this illness.

 

[Skippa]

Exactly the same as my doc, I would never have been diagnosed if it weren't for another professional writing a letter expressly suggesting I be referred to the ME/CFS clinic.

I got the impression that CFS is a bit like Voldemort - he who shall not be named. The doc is MORE afraid of the reaction from colleagues that they have diagnosed a "fad" disease that doesn't exist and would be a laughing stock among "real" doctors. Serious peer pressure to prove you aren't a quack doctor out there.

All at the patient's expense of course.

But here's the thing: patients absolutely NEED a diagnosis they can tell friends and family. They are seriously ill, and yet doctors won't diagnose anything, and then noone else believes them.

 

[A.B.]

Another reason for a diagnosis is that we need this illness to be more visible. There are too many patients that have the ME/CFS phenotype but don't show up on any statistics because they've never been diangosed. This leads to neglect of the illness at a research level. We can't afford to be silent and invisible.

 

[Invisible Woman]

When I first became ill this was very much an issue in the UK.

Patients would push for a diagnosis and were then accused by the BPSers of attempting to seek validation for their illness behaviour, or just plain trying to opt out of the difficulties of normal life.

Now, I was newly ill and naive so I wasn't fussed what they called it, I wanted to fix it (now I know that the name of a disease is really important to the how the patient is perceived). So I was seeking a solution rather than a diagnosis, like most of us.

However, the system is set up so you need a diagnosis: your family, other docs, social services and your boss will all want to know what your diagnosis is. You can try to describe the condition but I found that you will be asked: "Yeah, but what's it called?" Cue the judgement.

The snag is: once the diagnosis has been made and gone on your record, especially in the case of ME/CFS then you will be judged accordingly. I can understand a doc being careful about the label they saddle a patient with. Even if they are just holding off until they are sure.

If a diagnosis is not forthcoming from this doc and all the tests have been done then I would suggest getting in touch with the local ME/CFS community and tracking down the nearest ME/CFS doc with a good reputation among patients. They may be able to provide a diagnosis and advice on management strategies that will help keep you as well as possible. Then this specialist diagnosis and advice can be fed back to your GP or primary care doc. If they don't have any real understanding of the condition itself then the specialist advice will hopefully help to protect you from being pushed towards treatments that are potentially harmful.

 

[TrixieStix]

I agree wholeheartedly with the advice to make sure other conditions/diseases are ruled out first before concretely settling on an ME/CFS diagnosis. I am a 3 years into this thing (also had subtle symptoms for years before that) and after seeing different specialists (neurologists, rheumatologists, gastroenterologists) and ruling out all sorts of other things that can cause similar symptoms I finally was able to see an ME/CFS specialist a few months ago, and they ordered a huge amount of blood testing that no other doctors had run on me before.

And lo and behold the results of these tests have just come back and they are showing a few abnormalitites NOT associated with ME/CFS but that are instead found in autoimmune/immune complex diseases so I am now headed back to the rheumatologist to look into it further.

While my ME/CFS specialist has put down a ME/CFS/SEID diagnosis in my chart, she like me is still not ready to exclude the possibility that something else is causing my symptoms even though I meet every criteria for ME.