Is this cfs?

Edited , 5 users are following.

Hi,

I've been reading lots about cfs & am rather confused as to whether my symptoms are due to it or not.

For the past month I have had fatigue, migraine like headaches, weak feeling limbs, dizzy episodes, mainly when standing but occasionally whilst seated. fuzzy feeling in my head, intermittent sore throat & a very tender, slightly enlarged node in my neck.

For 2 months prior to this I had been trying to increase my fitness level by doing a lot of hill walking at quite a fast pace & the day before the start of the symptoms I had walked for miles along the Anglesey coastal path, up & down hills & steps!

The first 2 weeks I had symptoms every day but was able to potter around at home but latterly have had minimal headaches & less frequent episodes of dizziness & can do more & go out for short walks.

The NICE guidelines for ME state that.....

" a diagnosis of M.E. should be reconsidered if none of the following key features are present:

post-exertional fatigue or malaise

cognitive difficulties

sleep disturbance

chronic pain. "

Yes I have the first two but don't really have any sleep problems & I have some pain, due to arthritis but I wouldn't call it chronic in that sense.

Generally I wake up feeling ok & symptoms usually start within 15 mins of being up although can take up to a couple of hours to develop. Some days I have no symptoms at all.

I had a nasty virus in January, with a cough & similar symptoms to above, which required me to take 2 weeks off work.

Since then I've had 3 or 4 episodes of mild symptoms lasting only a day or 2 each.

This year I have been under a lot of stress with change of job, 2 bereavements of close family members & my mum has been very ill & hospitalised for 4 months.

When I think back I have had similar symptoms for 2-3 days at a time, every couple of months or so, for about 7 years. I'm a nurse & worked nights at that time so attributed the symptoms to that & disruption to my body clock.

2 years ago I had a general anaesthetic & for 3 weeks following that I had exactly the same symptoms I've described in the 1st paragraph. I'm aware that GA's can cause relapses of cfs.

I have had every blood test under the sun, 2 weekly covid swabs at work, & covid antibody test....all have come back ok.

So far my GP has said "lets just see how it goes for a few weeks"

Apologies for such a drawn out post but feel like I'm going round in circles with the information on the internet so am interested to know if anyone has had a similar experience & also does cfs present itself like this ie. getting worse over a long period of time?

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  • Posted

    Hi Kathryn

    I am sorry to read you are going through all this.

    Have you had your Cortisol levels checked... GP would have to ask specifically for this. A early morning cortisol blood test before 9am is the best time.

    Long term stress 24/7.....emotional, physical, work related, shift patterns etc, etc can lead to Adrenal Insufficiency which can take years to diagnose as it can take years for the Adrenals to start to malfunction.

    The adrenals struggle to produce Cortisol in sufficient amounts to get you through the day.

    When you have these dizzy spells...have you checked your blood pressure?...it could be low another symptom of low Cortisol.

    It's a bit of a vicious cycle the more frequent the episodes of illness needs more Cortisol and the adrenals can't keep up so you start getting sicker more frequently.

    The more serious form of Adrenal Insufficiency is Addisons disease...and usually people present with all over suntan and extreme weight loss but in some cases people do not have either of those symptoms...so it's not one size fits all situation.

    I was diagnosed with CFS but the actual cause of the CFS is Hypopituitarism for severe head injury so I have Secondary Adrenal Insufficiency and need to take Hydrocortisone)only a very small dose...but it took many years to get a diagnosis because I ended with severe CFS

    Also because it can take years for the adrenals to start malfunctioning you may just have the few symptoms of muscle weakness(especially after a lot of exertion), fatigue, headaches, dizziness.

    Do you crave/feel better if you eat salt/sugar/loads of carbs?

    You could ask for a referral to Endo Dept to have all your hormones checked out.

    Anyway I hope you find some answers to what is causing your extreme fatigue symptoms...there is always a causation of CFS it's just a nightmare trying to find what that is and a process of elimination really.

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    • Posted

      Thank you Maureen, that's all very useful & interesting advice & much appreciated.

      Cortisol is the one blood test I haven't had so definitely worth suggesting to my GP.

      I do crave salty foods at times but have always been a fan of savoury foods!

      Thanks so much.

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  • Edited

    im getting the the same symtoms aswell feeling tired all the time although i slept i would wake up my head feels tight and light headed and my neck and sholders feeling tight .i had all the blood test and everything is nomal apart from low vtamin d and high blood pressure i dont know if its the weather causing me feel fatigue .

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    • Posted

      yes i have high blood pressure on meds a my doctor prescribe with vitamin d higher dosage .but i still feel fatigue like no energy its been like this the whole summer i dont know if the weather is making me feel like this

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