Chronic Fatigue - am I imagining it ?

[TinHatPaperShoes]

In my late teens I contracted glandular fever . It was quite severe and I was diagnosed with chronic fatigue shortly after .

It took me almost a year to recover fully .

I had 4 years of normality before I had my baby . Ever since then I've been feeling worse and worse . Particularly the last year after I had a major abdominal surgery .

I'm constantly in a state of exhaustion , I get headaches , constant bad shoulder and neck pain , my neck is tender to touch and my joints ache .

I feel so low and run down .

I had to take time off of work before Christmas as I feel like I had "crashed" - I was so tired I could barely think or remember simple things , my mood was low and I just could not face it .

I told my boss I had a vomiting bug because I'm too embarrassed to say I'm tired ! Or they will think it's all in my head because I look "normal".

My doctor has ruled out lost of things with blood tests and I've now been referred to an immunology clinic for CFS investigations.

I've read some research on the link between CFS and glandular fever and it makes a lot of sense .

Is it possible I have an actual condition or could I be imagining it ?

Can anyone tell me what to expect at my first appointment?

Has anyone found anything to help with this?

Has anyone told their employer ? I'm worried I'll be laughed at for being "tired" ....

[PeterLovesHisKids]

Oops, I killed the thread! Sorry.

[PeterLovesHisKids]

Hi, your post really resonated with me. I too developed CFS after glandular fever, went into remission then developed fibromyalgia after having a tricky pregnancy and birth. Fibro is like CFS but with more emphasis on the pain side than the exhaustion side (though that's a kicker too). Little one is now a not so little 5 and my life has totally changed, but weirdly for the better in some ways. I had to leave my job (was a nurse and couldn't physically do the job any more, and the brain fog was meaning I made mistakes). Though it's been hard financially, I've gained so much in terms of time with my DD, and being able to slow down more in life, which I'm aware sounds a bit Pollyanna-ish. Getting a diagnosis helped because I no longer felt I was being a hypochondriac, and meant I got referrals to occupational therapy and physio, to help adjust life and learn to pace and manage the pain.

Sorry, just realised this post is epic but your OP really hit home to me. PM me if you like

[HeyMacWey]

Lots of us are also taking a range of supplements - Dr myhill has a website which is very informative.

[HeyMacWey]

You are absolutely not imagining it.
It does sound like you have had a relapse.
I was signed off work before diagnosis. They don't generally refer to cos clinic until symptoms have been present for 6 mths. I could barely function as pushed myself to try and work/carry on as normal but realised I was being harmful to myself and the doc signed me off 18 mths ago.

Cfs is diagnosed by exclusion of everything else so it's likely that the clinic will just either retest your bloods for the same and then make diagnosis on basis of symptoms. I have fibro and post viral cfs. Your op could have triggered your relapse.

The clinic will offer advice on fatigue management, cbt and graded exercise therapy (which I wouldn't touch).

Has your gp given you any painkillers to help with neck pain/fatigue?

I'm on nortryptaline which is great and helps me sleep well at night so I'm getting more deep sleep which is what your body needs to help recover.

Get a copy of your results to see what your levels are. They'll probably have tested for b12 too as low levels have similar symptoms to cfs. I'm taking additional as my levels were low but just in range.

Pacing is the only thing that allows me to have some quality of life.

Sympathies as you'll already know it's a horrible illness but lots of us about on here who have it - there's a support thread on here somewhere.

[TinHatPaperShoes]

Thank you for your replies

Thyroid , vitamin d etc have been tested at least twice .

What kind of extra tests might they do?

Has anyone been signed off work before diagnosis? I feel utterly rubbish

[Clarella]

Sympathy for the brain crashes too. I had them; it was appalling.

Pacing is going to be a big part of your strategy.

Was vitamin d tested? I'd definitely try a high dose one - very good spray from Holland and Barrett. The guy who's life's work is vit d (dr m holick) (proper doctor- though American) has said that a percentage of CFS patients are actually low vit d. There was an excellent thread on here recently too.

[Clarella]

CFS is taken pretty seriously now. They do think it's linked to an immune system thing.

I have had very similar symptoms this last year though not dx CFS as I certainly had the wrong dose of thyroxine, low ferritin and low vit d.

I did find I seemed to get into a downward spiral which was really hard to surface from. I found pacing very helpful. Cbt can help a lot. A friend is finding yoga (forest yoga) helpful too.

Another very helpful thing is a strong Epsom salt bath. The magnesium relaxes the stiff muscles well, and helps you sleep. You can get sprays too.

I would actually ask for the blood test results as sometimes it can help to improve something. My ferritin was 50 and I was struggling. 70-200is 'normal' and a low level might more usually be 10-20. Though many people are left at 20-50. But for me, due to thyroid issues, I needed a better level.

And are you certain that thyroid levels were OK?

I found a lot of the ideas in the pain toolkit helpful (website) but it's not for everyone.

[newestbridearound]

I felt exactly like you currently do when I first developed CFS. I wondered constantly if I was going insane as every other day I was getting a new odd symptom and feeling more and more exhausted. Not just tired but bone crushingly knackered and basically on my knees! If you have had all the tests and nothing else has come up then it is very possible that you didn't recover completely years ago- you can get periods of remission and then it will come back out of nowhere. The fact that you have had surgery and have young DC mean that this may also have triggered a relapse.

Obviously if it is chronic fatigue then there is no quick fix, it's about trying to look after yourself as much as possible and managing the symptoms as well as possible. Make sure you rest when needed (biggest chance of recovering comes from adequate resting), eat a good diet, don't push yourself and where possible delegate things you are struggling with. I know that these tips aren't the easiest things to apply to a busy life but they generally work OK for me if I can follow them. After several years of being bedbound and various crashes since I tend to recognise now when I need to 'stop'.

At the CFS clinic they may do a few more tests and then if you are diagnosed for definite they may offer you support in dealing with the condition.

It's been 6 years for me so far and it is totally shit so I hope you start feeling better again soon.