GP thinks I have chronic fatigue...Im not convinced...any sufferers out there who can add their thoughts??

[Athyriumm]

I hope I'm not simply in denial, but I'm not quite convinced by the GPs diagnosis. Having read around, many things do fit - horrible fatigue, brain fog, aches and pains...but equally, many don't...I don't have any flu like symptoms, no sore throat etc, Im sleeping ok, I am still just about coping with life. I still walk my dog for instance, albeit slowly and with a rest half way; I can still mow the lawn, altho would need a lie down after. I have a part time admin job that would be easier if I could concentrate, but I am coping. Does this sound like CFS?? Originally GP thought fibromyalgia since I have had long term issues with pain...but because the fatigue has got worse lately I am doing a lot less (Im normally very active - gardening, hiking, house renovations..) and so the aches have eased off. I've had so many blood tests done it's not true, but everything has come back normal I dont know what to think or do next. Can anyone add any insight?? Thanks.

have you had blood tests to see if your thyroid is working well or you have deficiencies (iron, d3, b13)?

arg, just seen that you had blood tests. do you know the results? or have you just been told 'normal'

Has your vitamin D level been checked?

I have fibromyalgia. The two conditions are very similar and often mistaken for the other. I will say that symptoms vary from person to person and it's entirely possible for someone to have CFS but not have all of the listed symptoms. Also many symptoms come and go so things might be connected even if they seem not to be.

They also seem to be spectrum conditions so it's possible and have them but not be at the extreme end of the spectrum all the time. There are also a variety of conditions considered as 'co-morbidities' so that may explain why CFS doesn't feel like the full story. Additionally, it's common for sufferers to have 'flare-ups' and periods of feeling better.

It's hard, but hang in there. If you have a niggling feeling that the diagnosis isn't right, or something is missed, keep on fighting your case. You know your body best.

I do have the results...a few were low normal but GP adamant that everything is fine. Of course, the low normal ones are all potentially fatigue related just to confuse me!
ferritin 40 (range 30 - 470)
heamocrit and haemoglobin were both just under (cant recall exactly)
I have been supplementing rwith iron eligiously for a month and no improvement.

thanks whatwould...just don't know what else to consider given all tests clear

Have you had your calcium and vitamin D tested? If yes, what were the numbers?

I am similar, but am resigned to a working hypothesis of CFS/ME until anything else can be found. All my blood levels are damn near perfect, but I'm working at about 20% of my previous energy.
I only get the flu-like symptoms when I overdo things, so when I am managing my energy levels I "just" have a sore throat, muscle aches and fatigue.
Have you been tested for Lyme Disease and Lupus? Those were two of the more obscure tests I had.

Not calcium I dont think MrsMozart, but vitamin D was low normal, and so I am supplementing that too now.

InMy..funnily enough I have sent off for a private lymes test today! How do they test for lupus?

I know how hard and frustrating it is!

I was lucky in that my GP was on the ball and referred me to a rheumy quickly. I was diagnosed within 9 months of a really bad virus that they suspect brought it all on.
OTOH, last year I was diagnosed with a congenital connective tissue disorder at 24yo. It was dismissed as joint hypermobility and growing pains all through my youth. Swings and roundabouts!

Either way, it sounds like you have some sort of chronic illness. So whatever the outcome, you have a lot of folk out there just waiting to help and support you!

We live in Wales our gps say the NHS is broken here. Two days ago OH was at surgery, his shoulder tendon snapped in January, he broke his ankle a few weeks ago. They will not scan his shoulder just offer physio. which leaves him in agony. GP agrees he needs an op. He cannot get physio for his ankle which used to be automatic.

I have needed two ops in the last few years, both occasions I could not get past GP so paid for private consultant after googling who and what I needed. That put me on the surgical list.

If you have £200 to spare, find yourself a consultant and pay.

I was tested privately for Lyme serology and ANA/ENA/dsDNA (whatever they are, they seem to be autoimmune rheumatic markers).

justasking...yes I would throw money at it, just not sure what path to go down. I guess Im lucky that I do have some spare cash at the mo.

thanks whatwould...sorry you're suffering too. Thats another thing for me tho - no nasty virus in the last year to blame.

I have had a really horribly stressful couple of years tho - multiple deaths of close family and friends. Life has settled a bit lately and part of me wonders if my body has kind of collapsed now it can.

I think I’d do a private Endocrinologist
and look what nhs hospital they work at.

You could do private consultation and then go on there nhs list

Get the calcium checked and note the result.

When you say Vit D was 'low normal' what was the number? What Vit D are you taking (and quantity)?

I’ve had chronic fatigue for 30 years but never had any sore throats.

Vit D was 60 ( 50-100 range)
Im taking 4000 iu a day

Ill ask for a calcium test too. And Im going to look up endocrinonologists. Thanks for comments everyone.

What were your TSH, T3 and T4 levels like?

Have you had b12 levels checked and if so, what were they?

Could be iron and vitamin D deficiency. That combination will leave you wiped out. Have some blood tests done.

Another asking for your B12 results. Sounds like B12 deficiency and some of the lab ranges (which vary from region to region) can be a bit iffy. I have terrible symptoms unless I'm at the top of the range. I have to have injections as I can't absorb it properly via the stomach, it transpires. Also I think I read that "optimal" ferritin is 80+ so definitely take some decent supplements for that. And if you end up needing B12 then you'll most likely also need folic acid/folate (B9) to support it.

Ask for copies of the blood reports
Friend of mine was very ill and a a TSH reading had been missed

Also wondering re B12 and pernicious anemia.

I had very similar and after 6 months of the doctors sending me away because there was nothing they could do, I tried the baking soda test. Turns out I had candida in my stomach, and low stomach acid meaning I couldn’t absorb anything. I still suffer from the low stomach acid but it’s well managed now and my CFS symptoms are no more. I also had near end of range normal everything (ferritin and B12 low, thyroid high), except vitamin D which was out of range low.

‘I have had a really horribly stressful couple of years tho - multiple deaths of close family and friends. Life has settled a bit lately and part of me wonders if my body has kind of collapsed now it can.’

I’m sorry to hear you’ve had such a tough time. I wouldn’t underestimate how this could be impacting your physical health. I was diagnosed with chronic fatigue syndrome over 30 years ago and have had it at varying levels of awfulness ever since. Something which undoubtedly makes a huge difference to how well I am is my stress levels. That’s not to say the physical ailments are in my head, more that my body seems to overreact to stress and this causes exhaustion and a multitude of aches, pains and other symptoms.

In addition to the helpful suggestions about possible tests you may have missed, I would look at ways to help you deal with what you’ve been through, such as counselling, relaxation exercises and just generally trying to give yourself a break and give up stresses wherever possible (I know that’s easier said than done).