Does anyone else not have an ME/CFS diagnosis from a doctor?

[VitaminK2]

I've essentially been trying to treat this on my own. I just feel this is not something most doctors would take seriously. I've never mentioned the terms ME/CFS directly but I've essentially been complaining about EXTREME fatigue. So far outside of my other treatment it's only led to me seeing an psychiatrist and being put on anti-depressants(which didn't work, no surprise there). However, my psychiatrist have commented on CFS not being clearly defined and probably not real when talking about my fatigue in passing.

With that said, I've been dealing with a chronic pain issue which fatigue/depression would be obvious co-morbidities. I've been able to manage my pain with cortisone/trigger point injections + pain meds. But the fatigue just got worse and worse. There's been times where I haven't left the house in 4-5days. Earlier on I was able to be somewhat productive with the use of coffee/diet soda + daily modafinil/armodafinil use. But now not even those work. They just end up compromising my ability to think clearly.

Right now I'm working on getting my inflammation way down through diet + supplements. I've also resorted to making my own injectables (i.e L-carnitine, L-carnosine, Alcar, etc). Pharmceutical meds just really messes up my mind. I took pramipexole + ambien before for insomnia+rls and I felt like I was starting to go crazy. And of course it didn't have a significant impact to warrant its continued use.

So I'm going to just keep trying to figure things out on my own until I can find a professional that's open-minded enough to help. Money, insurance, etc being barriers to finding and getting further professional treatment.

Edit: Intranasal insulin something I just started as well. I'm hoping this will help with the brain fog at least.

 

[Alvin2]

Love the user name
Finding doctors who understand ME/CFS is not easy. Perhaps you should play it this way, ask for a referral to a ME/CFS specialist instead of saying thats what you think you have. Hence your not threatening to their worldview or being an arrogant patient and once such a doctor diagnoses you your GP will accept it.
How to find someone to get that referral to is tricky, i don't know where you are located.

 

[purrsian]

Try looking for a GP who has any of the following listed as interests/specialities: holistic medicine/holistic health, chronic disease management, preventative medicine, disabilities. Basically something that indicates they are interested in looking at the whole picture rather than segments. It's not guaranteed to find someone ideal, but it is helpful. You can usually find this info on the "about our doctors" section of the clinic website.

Note that you'll probably encounter questions about mental health with any doctor, you just have to firmly say that you don't believe that it's the issue. I did suffer from depression/anxiety in my late teens, so I say that I have experienced it but what I experience now is very, very different and I don't believe it's caused by mental health. Also, depression and anxiety are very common co-morbidities in CFS, but also in ALL chronic illnesses. It's pretty normal to feel depressed when you literally can't keep up with normal life and all the expectations of those around you. Also add in that many of us have hormonal imbalances, which affects our stress responses.

You just need to be firm that you don't believe your issues are caused by mental health. In depression, you don't want to do anything and you suffer from anhedonia, the lack of interest in things. In fatigue caused by CFS rather than depression, you want to do things and often do them and then suffer a lot. You might feel angry that you can't do these things, or sad that you can't participate, or even cry often because honestly, it's a bit poop having this condition. But the main point is that you do want to do things and your depression is often related to being unable to do them rather than unwilling to.

It is a good idea to try and find a doctor to get a diagnosis. It's important to get all the tests done to rule out any other issues - things like thyroid problems, anaemia, infections, adrenal conditions, celiac disease. There are many conditions that cause fatigue, so if you had one (even if you also have CFS) it's important to identify and get treatment if possible. Finally, a diagnosis is beneficial for official things, such as if you have issues with your job (if you have one), university/college (if you're studying) or if you need to go for disability in the future.

Wish you lots of luck in finding a good doc. You might also search online for doctors who specialise in CFS in your area. Be prepared for lots of tests and for it to take a while before you get a diagnosis.

 

[Alvin2]

In depression, you don't want to do anything and you suffer from anhedonia, the lack of interest in things. In fatigue caused by CFS rather than depression, you want to do things and often do them and then suffer a lot.

Your correct but this won't usually work. Psychiatrists and other doctors think of depression as the default disease, anything remotely related will be explained away as depression.

You just need to be firm that you don't believe your issues are caused by mental health.

If you don't get anywhere with a doctor then no point pushing them or even expanded questioning, because once they have made up their minds they know everything and your wrong. Just move on to the next doctor.

 

[purrsian]

Your correct but this won't usually work. Psychiatrists and other doctors think of depression as the default disease, anything remotely related will be explained away as depression.

I've actually found this has changed a lot in recent years, perhaps the training is changing in my country. It has worked with several doctors I've seen now. By trying to find a doctor who looks at things as a whole, you're more likely to find someone who understands the interplay of various factors in the body and that even if depression is there, there can be other conditions causing it.

If you don't get anywhere with a doctor then no point pushing them or even expanded questioning, because once they have made up their minds they know everything and your wrong. Just move on to the next doctor.

I didn't mean that all you need to do is be firm and all will be fine, just that it's a starting point. Of course, if the doctor has made up their mind you can't change it, but any doubt they perceive will indicate to them that it is mental health. I found doctor's treated me better once I had to confidence to firmly say that I did not think it was mental health related. They'll always want to talk about it anyway, but I just stay firm that the symptoms are different and that any depression/stress is due to the illness. You can usually gauge their attitude and whether they are worth seeing again. My current doctor treats my condition as physical with some mental health symptoms as a result.

I have had many poor experiences of doctors treating me horribly, I think it's inevitable, but I try to be as confident and positive as I can be so they will be more likely to respond positively. But if you don't try, you'll never find someone to help. Finding a doctor who is willing to see that you researching your condition is a good thing is also helpful. My current doc admits she's not highly experienced in CFS but also notes that I enjoy studying biology and health in general, so she knows I get my research from good sources. I don't think a "I'm the doctor and I know everything and everything you say is wrong" type doctors could ever be helpful for CFS.

 

[Alvin2]

I've actually found this has changed a lot in recent years, perhaps the training is changing in my country. It has worked with several doctors I've seen now.

Count yourself lucky

Of course, if the doctor has made up their mind you can't change it

Those are the words i was looking for. This seems to happen and its always depression because ME/CFS is psychosomatic

But if you don't try, you'll never find someone to help

Absolutely, i just have learned form experience doctor does not get it, thank them for their time and move on, don't try to convince them of anything they don't accept.

 

[Wishful]

I've only accepted that I have CFS a few days ago. I've suffered from the symptoms since 2001, but whenever I wondered if it was CFS, google showed me the diagnostic criteria (4 of 8 symptoms from the list) and I only had two. Only recently I found that the American criteria isn't the world-standard. By the Canadian concensus, I do have CFS. My guess is that America's private health care system encouraged business interests and health insurers to 'influence' the criteria to minimize the number of people who might qualify for $.

Now that I know that I fit into the category of CFS, I still don't have any desire to go to a doctor about it. I checked the Alberta Health Care page for CFS, and don't see any point in bothering. I'd have to go through considerable effort (driving to Edmonton is an all-day activity and results in one or more days of symptoms) and at the end of that I'd probably get some vague diagnosis along the lines of: 'If the patient is telling the truth about the symptoms, it's possible that he has CFS.' All that would do is give me the treatments listed on the page (aspirin, antidepressants) which aren't really of any use.

Of course, the above doesn't take into account the negative effects, such as getting a doctor who doesn't believe in CFS, causing psychological stress for the patient. I've had enough experiences of that type, so I'm not enthusiastic about doctor visits. I'll go if I need a prescription to test whether it would help and think that I have a chance to convince the doctor to do so.

I did have one doctor dare me to commit suicide. I didn't record it, so I didn't see any point in bothering with a formal complaint.

So, I'm not going to bother trying to get an official CFS diagnosis unless maybe a real treatment becomes available.

 

[purrsian]

I did have one doctor dare me to commit suicide. I didn't record it, so I didn't see any point in bothering with a formal complaint.

Wow, that's just slightly negligent!

The main reason I would encourage attempting to get a diagnosis is to check for other conditions that might have treatment available. It would be pretty crushing to learn 5+ years in that you had a thyroid problem all along and had been suffering without treatment. Like you, I don't fit into every criteria available, but the Canadian one I do. Some criteria don't consider that not everyone gets muscle pain or sore throat. It's so frustrating to have to try and convince the world how you physically feel, I've always wished for a machine that you connect yourself to and the doctor connects to and then the doctor feels what you feel.

 

[Alvin2]

Now that I know that I fit into the category of CFS, I still don't have any desire to go to a doctor about it. I checked the Alberta Health Care page for CFS, and don't see any point in bothering

I understand but it is worth getting confirmation, if you need benefits you need a diagnosis and as mentioned you want to rule out other possibilities. It may be best to look for a ME/CFS expert to evaluate you (even though you likely know it already). I don't know if there are any in your area and finding such a person is harder but its a better way to go, don't deal with the doubting doctors you have, seek out the doctor you want (thats what i mean by look for a ME/CFS specialist specifically). This way they will send a report to your GP confirming the diagnosis then you get taken seriously.

I did have one doctor dare me to commit suicide. I didn't record it, so I didn't see any point in bothering with a formal complaint

This boils my blood, i would consider putting in the complaint anyways.

 

[grapes]

FYI: This article needs to be studied by more people who have CF, CFS, ME or whatever you want to call it: http://phoenixrising.me/research-2/...etion-theory-of-mecfs-by-rich-von-konynenburg

I myself fit what it says. I have low glutathione, B12 problems, and methylation blockages which I am working on and found the article insightful and brilliant.

 

[Wishful]

I don't think I'd get any financial benefits from a formal CFS diagnosis, unless it somehow provides lower drug costs. As for other possibilities, I've had extensive tests for those. I am surprised that with all those doctors that I've explained my symptoms to, none suggested that it might be CFS. I have read that CFS isn't included in medical education, but don't they read medical articles about CFS at all?

As for the complaint about that one doctor, the problem is that the complaints process in Alberta seems to be for the protection of doctors and hospitals, not patients. I avoided making a complaint because I felt there was little chance of benefit, and a much larger chance of being blacklisted and then being unable to find a doctor anywhere. I eventually did file a complaint against another doctor at the recommendation of the Patient Advocate. Part of the complaint was that the doctor was unwilling to order tests that might show something. The result was that the complaint was rejected because I didn't have any clinical evidence that I was ill. Catch-22? I did later file another complaint when a doctor failed to make the referral that he said he would, _and_ the clinic had no records of me visiting that doctor (which I had done many times). That complaint was verified, and the doctor had to take a course in handling paperwork properly. Following that, one other doctor at that clinic refused to see me. I consider the complaints process more likely to cause me harm than help.

 

[purrsian]

I don't think I'd get any financial benefits from a formal CFS diagnosis, unless it somehow provides lower drug costs. As for other possibilities, I've had extensive tests for those. I am surprised that with all those doctors that I've explained my symptoms to, none suggested that it might be CFS. I have read that CFS isn't included in medical education, but don't they read medical articles about CFS at all?

As for the complaint about that one doctor, the problem is that the complaints process in Alberta seems to be for the protection of doctors and hospitals, not patients. I avoided making a complaint because I felt there was little chance of benefit, and a much larger chance of being blacklisted and then being unable to find a doctor anywhere. I eventually did file a complaint against another doctor at the recommendation of the Patient Advocate. Part of the complaint was that the doctor was unwilling to order tests that might show something. The result was that the complaint was rejected because I didn't have any clinical evidence that I was ill. Catch-22? I did later file another complaint when a doctor failed to make the referral that he said he would, _and_ the clinic had no records of me visiting that doctor (which I had done many times). That complaint was verified, and the doctor had to take a course in handling paperwork properly. Following that, one other doctor at that clinic refused to see me. I consider the complaints process more likely to cause me harm than help.

Wow that's horrible that lacking clinical evidence that you are ill prevents you from making a complain against a doctor who refuses to provide tests that would provide clinical evidence that you are ill. I'm sorry you've had such a bad experience with complaints, it's pretty bad that it seems to doctor-focused when the whole point of medicine is "to do no harm". The protection should be for patients.

I'm probably very spoiled due to Australia's good healthcare system - because I'm seeing my doctor so regularly, she bulk bills me (so I don't pay anything, the government pays the clinic and I pay no gap), the only issue I ever have the meds for CFS are always "off-label" use and thus aren't discounted through our government pharmaceutical benefits system. I feel for American spoonies so much, it seems so complicated and stressful dealing with insurance and paying for things up front!

I'm glad to hear you have had tests for other possibilities. You should check out lists of things to exclude for a CFS diagnosis and ensure you get checked for anything that could've been missed (since the doctor's you've seen obviously don't have much of an idea!). Usually though, doctors do cover the basics. If tests have excluded everything and you meet the Canadian criteria, then that does probably mean it's CFS. It took me a few doctors, but I found one who listened when I said I thought I had POTS and presented the reasons why. Some doctors didn't know what it was, even though it's surprisingly common in chronically ill patients. It's frustrating that we have to learn to be our own doctor's when we have so little mental energy!

Also a quick note: you might not think you'll need to go for disability one day, but ensure that you keep any test results or things like that for future use, just in case. I know it can sometimes be hard to gather that information when it's years later, so I always try to ask for a copy of my test results "for my own records". Hopefully, you'll never be sick enough to need it! But always good to keep records regardless. Also beneficial if your illness lasts years, as we're all so zonked out most of our lives that it's easy to forgot what/when things happened

 

[Valentijn]

I don't think I'd get any financial benefits from a formal CFS diagnosis, unless it somehow provides lower drug costs.

ME/CFS often progresses, resulting in inability to work. Then it's necessary to have a diagnosis, and it can be extremely helpful if you already have found a good doctor to work with you.

And for a diagnosis of ME/CFS, you really should get a doctor to run some blood tests to exclude other causes of your symptoms.