Time to give up trying to get a diagnosis?

I have been struggling with chronic fatigue since summer 2015. My GP ran lots of tests and put it down anxiety/mood as I had been attacked a few years before by a family member and I had at the time seen my son go downhill with bullying. I had a lot of stress and by winter 2015 I was bed ridden with stress and fatigue. Since then the stress in my life has got better, my son is well but my health has continued to go downhill. I daily have chronic fatigue, body feels heavy, weak shaky thighs often, woozy head due to heavy fatigued eyes and head. I feel a loss in energy, lack of desire to keep fighting to get this sorted because after almost 2 years trying to get answers I am exhausted by it all.

In early 2016 I was diagnosed subclinical hypothyroid and put on thyroxine, I hoped that would make things better but no this year so far I feel even worse. In November last year I had a full run of blood tests which were all ok, sodium ran a little low at 129 so I had to repeat it and it came up to 138. I was told all the bloods he did were to rule out anything causing fatigue. I had FBC, blood film, B12, Folate, HBA1C, glucose, glandular fever, nuclear antibodies, liver and kidney function, creatine kinase.....He then just said everything was ok but by January my fatigue was worsening, I had just been through a stressful December as I seem to get winter depression which continues into January and February so I rang him and he told me it was likely the depression but then he told me he was worried as my level of fatigue wasn't normal and he wanted to run more tests. I had to have another full blood count, liver, kidneys etc... It showed my white cells were slightly out, the neutrophils were 1.6 (2-7) and Lymphocytes 3.98 (up to 3.65 is normal on the lab range) I repeated it 5 weeks later and neutrophils had increased to 1.8 and lymphocytes had raised to 4.45 so GP referred me to a haemotologist who wants me in 7 weeks to repeat the FBC and he will look at it himself under a microscope to check the white cells himself and then go from there. It has been worrying me is it blood cancer but my GP says it's nothing like that. I won't relax though until the haemotologist has taken a look.

My GP has announced he is leaving next month for family reasons which I fully understand after he explained to my husband why and he apologised leaving so sudden and leaving me without answers. I asked my husband if he would call him, I gave permission to my GP for him to talk to my husband about my health. I just feel overwhelmed and before he leaves I wanted him to speak to the GP i have chosen in the surgery to take over my care, explain to her I need home visits due to my agoraphobia and chronic fatigue and if bloods are needed to do them at my house (basically everything my current GP does) as a change in GP is very upsetting and it's embarrassing to me having to ask a new GP to do home visits. So my husband had a call with him today to discuss this and to see if I can get some kind of diagnosis after so long because my GP has played with the idea of CFS a few times and just left it. He always blames anxiety or mood and arghhh I am only anxious on bad fatigue days, my agoraphobia has only started due to how unwell I feel and I have home visits due to this.

My GP won't diagnosed CFS he just says I have chronic fatigue. My husband said my GP said he thinks it's more depression as that causes all my symptoms like constant fatigue, unrefreshed sleep feeling, feeling I am dragging around a heavy decaying body, brain fog, heavy eyes and head, woozy feeling and like the floor moves as I walk and my GP said yes depression causes all of those things. My husband then put to him that my crashes hit after exertion, so too much housework, a trip out that's over an hour, too much talking etc.... can cause me to crash. Depression surely cannot do that as it's more a post exertional malaise? He said 'CFS is just a diagnosis of exclusion'. Hubby also said I can't stand for long periods or I feel faint, weak, fast heart etc.. but nope all just due to the fatigue.

I have been left with this chronic fatigue that rules my life. Today for example I woke feeling a 10/10 crash day, so exhausted that even walking to the toilet made me anxious as I felt so weak, heavy, awful nausea all day and very woozy like the ground was moving. Awful. That is not depression but my GP seems to just blame everything on 'mood'. I am not a depressed type, anxious yes, I have always had anxiety but depression when I have experienced it is always situational since the attack. I admit I have depression but it's due to this situation because when my fatigue issues began I was doing so well mentally since the attack, I had overcome my agoraphobia and really happy then WHAM the fatigue began and worsened and worsened, that was back in summer 2015.

I just feel confused and now don't know what to think. My GP is leaving and signing me over to another GP which will hopefully lead to some more explanation.

Julie

 

Don't know what to say much. Just wishing good luck with the new GP. Since the old didn't really understood your disease, hopefully the new will be a new opportunity.

 

I'm sorry to hear people aren't taking you seriously. It is really a massive multiplier for feeling worse. You will find people here take you seriously though.

>my crashes hit after exertion, so too much housework, a trip out that's over an hour, too much talking etc

>crash day

Based on these comments I believe you could well have chronic fatigue syndrome. Post exertional malaise is the key differentiator. Meanwhile, exercise is supposed to be helpful for depression...

Sometimes you can have too much occam's razor. Not everything has to have one single cause. There is also no reason a person can't have both depression/anxiety and CFS. Both are quite common and they are not mutually exclusive. In fact, some people say depression can be related to inflammation and also to gut dysbiosis. so they are probably likely to co-occur.

 

Hi Julie- I'm sorry you are so sick. It also sounds to me like you have CFS. I was told for many years that it was my anxiety and depression that was making me so fatigued and unable to work.

Then I was in a very good place in life, had a part time job, girlfriend, etc. and was very happy. I still felt fatigued and exhausted (what I was told was depression!) almost all the time though. That's when I realized that I had cfs and it was the cfs, crashes and post exertional malaise, not depression or anxiety causing my symptoms!

As you pointed out very well, if you had only depression, exercise would make you feel better, not worse! I believe you are very, very ill and probably have cfs. You know you are sick and that It's not the anxiety or depression that is causing it- trust what you know. All the best, Jim

 

Thanks Jim

It's been an awful 2 years trying to get an answer as to why my fatigue is so bad and my gp just blames anxiety or depression just because of history of anxiety but this is nothing like it. I'm desperate to get better and I'm only anxious and low due to how fatigued I am. On days my fatigue lifts a bit I feel fine mentally.

Exactky, I crash after exercise is lots of emotional stress or socialising. Talking a lot on the phone causes my chest and back to ache.

My gp just wants to one minute suggest cfs, then worries is diabetes or some other disease, to them go back to mental health being a cause. It's been driving me mad the last 2 years.

Thank you for your reply

Julie

 

Thank you.

I definitely became depressed after a year of fatigue, plus feeling so physically unwell I became anxious as my gp never told me why I felt so bad. I crashed often too, still do. Who would become depressed living with chronic fatigue daily.

I have the daily symptoms I mentioned but I've no pain or sore throats I've seen mentioned.

Thank you

Julie

 

It's crazy with my GP too. I even would have a diagnosis of T2D, PAD, COPD and a couple of other latin words, but when it comes to my PEM it must be psychiatric in his opinion. Not that he ever suggested any treatment for any of them. Just referrals after referrals, which brought nothing to light than further diagnosis's. Just had an brain MRI where they found an old infarction of the cerebellum I haven't even mentioned.

Just stayed with him till now because he would at least semi-regularly would do not-so-common blood tests (which other GPs refused right away). On one of those occasions he truly well-meaning exclaimed: According to your blood test you're perfectly healthy again! - Must be the bliss of ignorance.

 

I've been in a similar position for a long time,what would a diagnosis of me/cfs change, you may even end up being subject to the treatment CBT and GET and that's not good.

 

Have you thought about printing out the diagnostic criteria, and then underneath each one, writing specific examples so you can have your doctor look it over?

 

Great advice.

He wants me to write a letter including all my daily symptoms so he can hand over to the new gp before he leaves so I will include a print out of the symptoms and diagnostic criteria too.

Thank you
Julie

 

I have thought this but am I safe to diagnose myself?

Julie

 

It's so frustrating isn't it. I've been tested for everything under the sun blood wise and he still won't diagnose. It's so frustrating.

I have had enough of it to be honest. I have stayed with him because at least he would do home visits if needed. Maybe changing gp will help. Who knows.

Julie

 

I would also suggest stressing the difference (if any) you have between things you want to do, and things you cannot do.

When i was/am depressed i was particularly ambivalent about food and socialising, whereas with with this illness i might be enthusiastic about something but not able to do it.

Please feel free to PM me if you would like some small tips about the agoraphobia, I was in a similar situation myself, along with the anxiety, and I'd be happy to go over strategies and ways of coping.

 

Thank you.

That's how I feel. I'm desperate to do Slimming World for example but too exhausted to stand cooking. I want to get out but so exhausted I just crash if I do. Depression I gather is more a lack of desire to do things where as I explain it as I've a well person trapped inside me who can't get out of this fatigued weak body.

I shall message you, thank you for that.
Julie

 

Yes, that's a good way of describing it. (At least in my personal experience)

 

Hi @Jemima37
I see you are in the Uk. To be honest I agree with what was written above- a diagnosis of ME is unlikely to get you better treatment. Not every case of ME fits neatly into the criteria anyway....and in some quarters the 'ME' diagnosis may actually get you treated worse.

is there a local support group for ME sufferers? They might know of a local GP you could sign up with who knows about ME.....as for tests etc. My experience is that the people on PR who have had lots of blood tests etc are either from a country other than Uk or have gone private.

I have a friend who doesn't completely fit the ME profile ( no sore throat etc) but who is now coming round to realising this is what she has. She is having monthly telephone consultations with DR Paul Worthley via the ME Trust http://www.metrust.org.uk/ and he has helped both with diagnosis and self management. She is finding it really helpful.

Wishing you and your family luck with finding answers on this.

 

Dear Julie,
I can well understand your frustration but it may be that your GP is just being honest. I retired in 2010 and never ever made a diagnosis of CFS or ME. To 'make a diagnosis' is more than just giving a name; it is assumed to mean 'I know what is wrong' and nobody knows what is wrong in the case of CFS/ME. The honest doctor should probably be up front about that. It is also diligent and honest to go on looking for other possibilities like type 2 diabetes or indeed depression. I think most PR members are agreed that we want doctors to go on looking for possible explanations.

But you might say surely we know there is a disease called CFS/ME? I think the answer is firstly that we do not know there is one disease. So if you are given the same diagnosis of CFS as someone else there is no guarantee that the outlook is the same or the treatment should be the same. But secondly I think we do now know that there is a pattern of illness we can call CFS/ME that is pretty specific and recognisable, just as there is for eczema or inflammatory arthritis, whether or not all cases have the same cause. But being confident that there is a pretty clear cut pattern is pretty new. I would say that it has only really been established with the epidemiological studies around 2010 that compared numbers with different criteria in different places and showed that there was some sort of consistency. (One could compare that with one study of fibromyalgia which showed that some doctors diagnose it 100 times more often than others!)

So I think we are just moving into an era when doctors should be expected to understand that CFS/ME is a meaningful category. On the other hand a good GP is right to be sceptical about new things in the journals because so much runs out to be hot air. And if nobody knows what to advise in terms of treatment then there is no harm waiting for a bit. It is better than sending everyone off to therapists who think they know everything but know nothing.

It sounds as if what you need is someone who can guide you along a sensible plan of how to optimise your situation - and forget about a diagnosis. Hopefully you will find a GP who can do that despite the impossible pressures on their time these days.

 

Hello

Yes I'm near Cheshire UK.

I think for me having anxiety since all my ill health began I need a diagnosis because every time I crash and feel so poorly I panic there is something very wrong with me. I get terrified it's something awful and hats because noones ever told me point blank what it is in this whole 2 years. I've just had my energy crashes that land me in bed and daily fatigue put down to mood which is so wrong as I wasn't depressed at all when my fatigue began.

Julie

 

I understand so well. When I was diagnosed with a PAD with a 80% blockage at the abdominal aorta I was told by the diagnosing internist, that whatever I do - even eating all the greens beside all their pharmaceutical interventions - my 5-year mortality would nevertheless remain at 30%. I was sooo scared. Even more so after 4 month of following their recommended lifestyle interventions (smoking cessation and walking excercise), and it indeed only got worse.

But with a deathly diagnosis one also gets a place to start all over. After all, what more is there to loose? First of all, in the known of the nocebo effect, I had to protect myself from the poor outcome-believe of all my MDs, and simply give it the benefit of doubt. Then look for alternative methods with sufficient anecdotal evidence for my taste. And followed it through.

Now 8 years later, having overcome a 60% Government certified walking-disabilty due to that PAD, am still alive after half a dozen other diagnosis later, some of which just as severe. And I must agree that that the reminder of my own immanent death made it through a long process easier, to end up without any anxiety or depression. I only suffer anger due to the state of affairs in the medical profession, though.


PS: Needless to say, nothing I write should ever be construed as medical advise..

 

i kind of see the point here about avoiding being pressed into CBT/GET except that surely with a diagnosis of chronic fatigue the same applies