Who diagnosed you?

[Jemima37]

The reason I'm asking is my GP in the U.K. Is saying he can't diagnose me and wanted to refer me to a general medical doctor in the hospital to get same bloods he's already done, done again and then a diagnosis.

For almost 2 years I've had chronic fatigue. But last year it hit worse in the form of daily fatigue and crashes that vary in intensity. I have crashes after any stress emotionally or over doing things. Crashes can either be what I call a weak leg crash where legs are weak and bp feels low. Or a crash where head and eyes feel so fatigued and brain fog is bad or a bad one like I have today which is head and eyes fatigued, dizzy, weak but heavy body and I feel I'm dragging my body around all day. Everything's a huge effort in those crashes.

Day to day I'm fatigued and life is limited but crashes even tougher. Gp found underactive thyroid last year and eventually reluctantly gave me thyroxine. I've been on it 12 months now and it's within range yet my symptoms are persisting.

Bloods run about 6 times in he last 2 years. Nothing picked up other than thyroid. Until the last 2 months my fbc both times showed slightly lower neutrophils at 1.6 then up to 1.79, and slightly raised lymphocytes at 3.98 and then 4.45. I had sodium at 134 so 0.1 under range and gp was worried as it ran low once before. Other than that all the tests he's done for glandular fever, nuclear antibodies, liver, kidney, diabetes etc all normal.

He's suggested cfs a few times but never diagnosed it saying he can't. This last 18 months has led to me having severe anxiety and agoraphobia purely due to how fatigued and ill I feel most days and the fear as my gp just goes from test to test, repeating the same ones over and over but never telling me why I'm so unwell with fatigue and crashes. Last year he blamed anxiety and mood on my crashes but since January he's been taking it more serious but he worries it's diabetes one week, electrolytes the next. I'm exhausted.

Due to my agoraphobia I know I couldn't walk into a hospital right now to see a general medical doctor. I'd panic but I'm also scared daily why I crash and feel so ill at 37 years of age. My health anxiety runs wild.

I'm a mum to 3 children, hubby is great but works long hours. I've no extended family to support me either. It's tough. I've had PTSD since 2012 as my brother attacked me which led to anxiety but things improved dramatically until my health started suffering and the anxiety flooded back. My gp thinks stress could have led to my ill health.

I'm crashing a lot at the moment, I wake feeling I've not slept and today walking around my house triggers my anxiety feeling so heavy and weak. I make myself shower daily but today I've not even washed my hair. I know I need to learn to pace myself and stop feeling down on my appearance because I don't feel up to make up and doing my hair nice. I am over doing things at home with the kids and house and then pushing myself to always look ok and some days even getting out of bed is tough. Then I have better weeks where I've a 5/10 level of fatigue and I love those weeks as I can function despite it still being there. Today is a 10 and I feel too tired to even talk lol!

Sorry this got long or if it made no sense. I just feel so alone I this and my anxiety has run wild over the last year as my gp just brushed me aside last year blaming my fatigue on anxiety and now he's worried and it's made my anxiety run rife since my latest blood results being a bit out of range.

Has anyone been diagnosed by their gp? Why is mine saying he can't diagnose it, only a hospital doctor can?

Julie

 

[wastwater]

I think it is a specialist diagnosis that cfs centres can make,maybe only cfs centres.
Maybe try get a referral to one of those.
I find doctors don't like it because its not accurate.
Keep looking for better explanations also

 

[Jemima37]

I think it is a specialist diagnosis that cfs centres can make,maybe only cfs centres.
Maybe try get a referral to one of those.
I find doctors don't like it because its not accurate.
Keep looking for better explanations also

I asked him to refer me to a cfs clinic but he suggested this general medical doctor.

Thank you.

 

[ryan31337]

Hi @Jemima37,

Unfortunately it's unlikely that you'll find any answers or be much better off with a CFS diagnosis here in the UK - I'd argue that you're often in a worse position for it as other avenues of investigation tend to close off as a result. Many of us here have had the experience that its a dead-end in terms of understanding/treatment and a black mark on our records in the eyes of many doctors.

I've spoken to others that have gone to the CFS clinic in my local area and have been turned away because of concurrent mental health issues, so that may be a reason why your GP is reluctant to send you to one. In my opinion he is actually doing better than most GPs by continuing investigations and sending you to consultants - especially in light of the acknowledged mental health concerns.

You mention a few symptoms that could be related to orthostatic intolerance, commonly POTS or NMH that go alongside CFS frequently. If that is something you suffer from and you cherry pick a cardiologist with a special interest in this area, it can lead to some helpful treatments and improvement

Ryan

 

[me/cfs 27931]

I was diagnosed using the Institute of Medicine (now National Academy of Medicine) "Proposed Diagnostic Criteria for ME/CFS".

Proposed Diagnostic Criteria for ME/CFS

Diagnosis requires that the patient have the following three symptoms:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
2. Post-exertional malaise, * and
3. Unrefreshing sleep*

At least one of the two following manifestations is also required:

1. Cognitive impairment* or
2. Orthostatic intolerance

_____________
* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

 

[jpcv]

I diagnosed myself, the majority of doctors don't know about this disease, myself included.
I diagnosed myself because I got sick and started to study what was happening to me.

 

[me/cfs 27931]

I diagnosed myself, the majority of doctors don't know about this disease, myself included.
I diagnosed myself because I got sick and started to study what was happening to me.

I too diagnosed myself, and then brought it to my doctor, who agreed. Then two more doctors (including an ME/CFS specialist) agreed.

While I had researched ME/CFS before the IOM report, the disease description I was looking at included significant pain, which I don't have (apart from headaches). The IOM diagnostic criteria don't focus on pain, except as part of PEM.

I was convinced I must have some rare little known neuroimmune disorder. Why else would dozens of doctors be unable to diagnose me?

When I figured out I had an incredibly common disease affecting over a million in the US, I was dumbfounded.

ETA: The two diseases I came across that were also remarkably similar to my symptom cluster were 1) Multiple Sclerosis and 2) Neuro-Behcet's Disease.

 

[TigerLilea]

I was diagnosed by two GPs who were fairly new to practicing medicine. The diagnosis was confirmed by a rheumatologist who specialized in CFS/ME and FM.

 

[Wishful]

Add me to the list of "diagnosed myself because the doctors weren't coming up with a diagnosis". As with Webdog, I assumed it was a rare form of chronic neuroinflammation. Every few years I'd wonder about CFS, but I only had 2 of the 8 symptoms listed as criteria. Only a couple of months ago did I realize I was looking at the _American_ criteria: criteria probably influenced by private health insurers who didn't want people to qualify. By the Canaian criteria, and the new international criteria, yes I do qualify as having CFS.

I'd been to several dozen doctors, and not one even mentioned CFS (or ME).

I haven't bothered to try to get an official diagnosis of CFS, because it's not easy and there doesn't seem to be any real benefit.

 

[me/cfs 27931]

I should add that 23 years prior to my diagnosis, a doctor suggested I might have Chronic Fatigue Syndrome. However, he said there was no treatment and therefore no point in making the diagnosis.

So I was referred back to psychiatry, who had a multitude of (ineffective) treatments. I was depressed at the time because, due to being ill, I had to leave a dream job I very much loved.

 

[ladycatlover]

My GP at the time provisionally diagnosed me, then sent me to Infectious Diseases consultant for confirmation. He preferred to call it Post Viral Fatigue Syndrome. Later my GP wrote on my sick notes that I had "a post viral fatigue syndrome that looks more and more like ME." Remember, this was 25 years ago!

Compared to many (most?) in UK I have always been treated very kindly by my GPs, whose attitude all along has been "Just because you have ME doesn't mean that you can't get other things wrong too."

One of my friends was diagnosed by Prof Richard Edwards (you could look into some of his papers, but what I most remember about him is in the 1993 Novartis Foundation Symposium tome on CFS where he quoted the Bible about "pick up your bed and walk") years ago. She later went on to be re-diagnosed with MS following brain scan that she paid for privately. She has since died. I think she was in her early 70s, so not a great age.

I have also heard of re-diagnoses of Behcet's and Haemochromatosis.

 

[Jemima37]

Hi @Jemima37,

Unfortunately it's unlikely that you'll find any answers or be much better off with a CFS diagnosis here in the UK - I'd argue that you're often in a worse position for it as other avenues of investigation tend to close off as a result. Many of us here have had the experience that its a dead-end in terms of understanding/treatment and a black mark on our records in the eyes of many doctors.

I've spoken to others that have gone to the CFS clinic in my local area and have been turned away because of concurrent mental health issues, so that may be a reason why your GP is reluctant to send you to one. In my opinion he is actually doing better than most GPs by continuing investigations and sending you to consultants - especially in light of the acknowledged mental health concerns.

You mention a few symptoms that could be related to orthostatic intolerance, commonly POTS or NMH that go alongside CFS frequently. If that is something you suffer from and you cherry pick a cardiologist with a special interest in this area, it can lead to some helpful treatments and improvement

Ryan

Thank you for your reply.

Oh really? Why does mental health stop a doctor or clinic seeing you or taking you seriously about cfs?

Oh I have wondered if I have POTS. Which symptoms sound like it please? I can't stand for long periods, I always feel faint and like I am sinking into the floor and feet feel cold. Strange sinking feeling and I have to sit a lot when we go out. Even at home I can't stand cooking for long or talking, I feel I'm sinking and dizzy. Horrible. That's even on a good fatigue day.

Thank you

Julie

 

[ryan31337]

Hi Julie,

Currently CFS is a diagnosis of exclusion, given when all else has failed. Treating other conditions should come first as they might be the root problem.

The guidelines that the NHS follow do not allow for treatment of any worth in CFS. In a CFS clinic at best you'll get a knowledgeable practitioner who bends the guidelines somewhat to offer advice on pacing to minimise your symptoms, as well as a sympathetic report to GP/employer. Its extremely unlikely that you'll be offered further investigation or medication.

Many of us have also had the misfortune of being seen by those that follow the guidelines strictly, whereby you're offered counselling and exercise therapy that is delivered with the intention of making you believe that you are not actually sick.... thankfully this nonsense is on the way out but some still believe it appropriate. If you do actually have CFS this approach will likely make you worse. If you have some other condition that is just causing chronic fatigue you may fare differently.

POTS or another form of orthostatic intolerance does sound likely. Personally I have had far, far more success & attention from doctors since focusing on a POTS diagnosis. My CFS label is largely ignored in favour of POTS, as that is something the doctors are allowed to investigate and treat. Have a quick read of this site: http://www.potsuk.org/symptoms

POTSuk have excellent documents with more detail for patients and GPs. They also have a list of recommended consultants to be referred to (don't expect your local cardiologist to help much!).

Ryan

 

[ryan31337]

Oh and anxiety can be a major, major issue for many patients with POTS due to the mechanism at play!

 

[Jemima37]

My GP at the time provisionally diagnosed me, then sent me to Infectious Diseases consultant for confirmation. He preferred to call it Post Viral Fatigue Syndrome. Later my GP wrote on my sick notes that I had "a post viral fatigue syndrome that looks more and more like ME." Remember, this was 25 years ago!

Compared to many (most?) in UK I have always been treated very kindly by my GPs, whose attitude all along has been "Just because you have ME doesn't mean that you can't get other things wrong too."

One of my friends was diagnosed by Prof Richard Edwards (you could look into some of his papers, but what I most remember about him is in the 1993 Novartis Foundation Symposium tome on CFS where he quoted the Bible about "pick up your bed and walk") years ago. She later went on to be re-diagnosed with MS following brain scan that she paid for privately. She has since died. I think she was in her early 70s, so not a great age.

I have also heard of re-diagnoses of Behcet's and Haemochromatosis.

Thank you for your reply.

Can I ask what the last part of your message meant? Who had the re diagnosises?

 

[ladycatlover]

Thank you for your reply.

Can I ask what the last part of your message meant? Who had the re diagnosises?

Two other people who had initial diagnosis of ME/CFS. One I knew in RL (now lost touch), the other from internet.

 

[Jemima37]

Two other people who had initial diagnosis of ME/CFS. One I knew in RL (now lost touch), the other from internet.

Oh I see. So they didn't have cfs?

 

[rosie26]

I diagnosed myself as well. At the time I was severely ill with ME and so frightened by the severity of the symptoms. My doctors were still trying to figure out what was wrong with me. I managed to get hold of a medical book of symptoms and looked up a lot of my symptoms and each time I would see CFS in the diagnosis but I kept pushing CFS aside because I thought I was far too ill to have CFS. But as the months wore on I realized that this must be what I have, ME. I was so shocked. I never imagined ME to be as severe as what I was experiencing.

I then asked my GP for a referral to a doctor who was involved in ME and it was through this doctor that I got a diagnosis of ME. I had many tests to rule out other illnesses by my own GP and the doctor who sees ME patients.

 

[Jemima37]

Hi Julie,

Currently CFS is a diagnosis of exclusion, given when all else has failed. Treating other conditions should come first as they might be the root problem.

The guidelines that the NHS follow do not allow for treatment of any worth in CFS. In a CFS clinic at best you'll get a knowledgeable practitioner who bends the guidelines somewhat to offer advice on pacing to minimise your symptoms, as well as a sympathetic report to GP/employer. Its extremely unlikely that you'll be offered further investigation or medication.

Many of us have also had the misfortune of being seen by those that follow the guidelines strictly, whereby you're offered counselling and exercise therapy that is delivered with the intention of making you believe that you are not actually sick.... thankfully this nonsense is on the way out but some still believe it appropriate. If you do actually have CFS this approach will likely make you worse. If you have some other condition that is just causing chronic fatigue you may fare differently.

POTS or another form of orthostatic intolerance does sound likely. Personally I have had far, far more success & attention from doctors since focusing on a POTS diagnosis. My CFS label is largely ignored in favour of POTS, as that is something the doctors are allowed to investigate and treat. Have a quick read of this site: http://www.potsuk.org/symptoms

POTSuk have excellent documents with more detail for patients and GPs. They also have a list of recommended consultants to be referred to (don't expect your local cardiologist to help much!).

Ryan

Thank you

I shall take a look. I'm not sure if pots causes fatigue issues but I do know sometimes I've wondered if it could be, but I only know a few symptoms but a friend of mine suggested I couldn't have it as I would have a racing heart standing after 10 minutes.

My gp doesn't know what he's doing, he's had me like this for 18 months and he just runs bloods. Then jumps on anything that's 0.1 out of range like the sodium and he worries it's that making me ill. The best time he will say it's diabetes despite never having a high hba1c result and I've had 3 tests in the last year! Last year he blamed anxiety, mood or a virus on why I was crashing often. Now he's throwing cortisol at me, diabetes, sodium... and he's now referred me to haematology due to my neutrophils being slightly low and lymphocytes slightly high. It's worrying he waiting to hear what they will say. My gp makes me very anxious this year because every time we talk it's a different test and after 18 months I'm an anxious exhausted mess lol! He's suggested cfs so many time she then doesn't do anything else. Even though my thyroid was out of range last year he still didn't suggest it could be causing my fatigue issues. Urgh it's been a long 18 months.

Thank you for your kind and helpful replies. I appreciate them.

Julie

 

[Jemima37]

Thank you for your reply.

I diagnosed myself as well. At the time I was severely ill with ME and so frightened by the severity of the symptoms. My doctors were still trying to figure out what was wrong with me. I managed to get hold of a medical book of symptoms and looked up a lot of my symptoms and each time I would see CFS in the diagnosis but I kept pushing CFS aside because I thought I was far too ill to have CFS. But as the months wore on I realized that this must be what I have, ME. I was so shocked. I never imagined ME to be as severe as what I was experiencing.

I then asked my GP for a referral to a doctor who was involved in ME and it was through this doctor that I got a diagnosis of ME. I had many tests to rule out other illnesses by my own GP and the doctor who sees ME patients.

Hi Rosie,

I'm glad you have had your diagnosis and were able to take over your care like that. As I just said above I've been like this for 18 months, I've had tests in the form of blood tests and physical exams many a time in hat 18 months. My gp has done 5 full blood counts, blood film, b12, folate, ferritin, liver, kidney function, glandular fever, nuclear antibodies, hba1c, cholesterol, creating kinase, crp, gout, full iron screen....

Last year he was blaming anxiety or mood on my severe crashes but this year after I'd been ill a year already he suddenly said he was worried. I've had a few results slightly out of range on recent FBC so he's referred me to haematology which makes me so anxious. Plus I have agoraphobia since being unwell so appointments are very hard for me.

I like you find it so hard to believe it's not something more sinister like cancer. Yesterday I crashed, I couldn't think why other than I had some emotional stress Sunday that upset me. I felt so fatigued the moment I opened my eyes, weak arms and legs, heavy lead arms and legs, nausea, breathless like chest is too tired to breath, a feeling of dropping as I walked, dizzy head and very fatigued eyes. I say it's like my body is rotting and I'm dragging it around all day. For me the physical symptoms are he worst, feeling weak and heavy scares me. I can cope with a tired head and eyes even though it's horrible. I just felt so ill all day and even walking to make a drink scared me. I couldn't even cook dinner and had to order take away for the children. I daily feel tired and heavy so have to rest a lot and standing up long periods I feel dizzy and like I'm sinking but crashes are awful and they come after too much housework or walking or any emotional stress. I can't help but worry I've not got cfs.

Thank you again and sorry this reply got long

Julie