Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Chronic Fatigue Syndrome - anyone out there who can help or advise me?

18 replies

alwaysthepessimist · 05/07/2017 10:07

Apologies for what is probably going to end up being a long post but basically I now believe I have CFS. This all started about 2 years ago, at first I put symptoms down to my mum being diagnosed with lung cancer and me looking after her & dad & also my own family, plus working full time - tiring yes I know - doc said I was depressed and put me on citalopram, I ballooned weight wise and started really struggling with low mood and pure exhaustion, doc then said I had a severe vit d deficiency so I now take daily supplements, came off the citalopram and was sterlised last year (my choice I am 46). I have asked the gp about this & fibromyalgia before and basically had the brush off but my symptoms are as follows:

Exhausted, beyond belief, can't even describe how it feels really, today I feel like I am wading through deep water (that's the best way I can describe today)
I sleep, not all night, always have disturbed sleep, am awake by 5.30am, could happily then go back to bed within 2 hours of being awake
keep having weird heart beats - palpitations? Feels like my heart is beating out of my chest
No periods since December - onset of menopause maybe?
I ache, everywhere, my feet especially, it hurts to walk when I get out of bed
Regular sore throats for no apparent reason
headaches, nothing major just a what seems to be a constant background headache
Mood swing - yesterday I spent best part of the day in tears and I can't explain why
rib pain
awful skin, feel like I am a teenager again
IBS symptoms
Trying to lose weight, following SW - have managed to lose just over 2 stone but now can't seem to shift anymore and I still have 4 stone to go!

This week seems to be worse but I did a 5k (stupidly) at the weekend so I am really suffering for that

I am waiting for the nurse to call me back about getting in to see the gp today, have printed out some CFS information, just don't know how to get them to take me seriously, everytime I go they just say it is because I am 46, have a young child and am overweight then offer me antidepressants - tbh I feel totally failed by the GP surgery but I really really need someone to believe me and help me get help. I can't give up work, we can't afford it no matter what so I still have to go to work but there must be some help available surely?

OP posts:
alwaysthepessimist · 05/07/2017 10:07

gosh that is long, sorry & if you get to the end of it thank you for reading

OP posts:
UserPlusLongNumber · 05/07/2017 10:12

I have CFS and yes, this sounds similar. I couldn't run a 5k though, I can't run!

CFS is a diagnosis of exclusion really. Have you had your thyroid checked? Also iron, ferritin, folate, b12 etc. Things that aren't routinely tested for. VitaminD deficiency can cause the symptoms you describe, are you being treated for that? Have you had a coeliac test?

My feet hurt sometimes, I have hashimotos thyroid disease, ferritin, folate and vit D deficiency. Try cutting out gluten and dairy, it helps to reduce inflammation in the body and should ease your symptoms a little.

alwaysthepessimist · 05/07/2017 10:21

userpluslongnumber thanks for your reply - just to clarify I didn't run a 5k I walked and it was awful by the time I got to the end I wanted to curl up and cry. I have had full bloods done a few months back (the last time I went about all this) and they all came back fine apparently, the vit d supplement must be working as they said my levels were ok. I have had a coeliac test and that was clear. I can try cutting gluten & dairy and see if it helps but tbh apart from a couple of coffees a day I don't have any dairy and I rarely eat bread but I can take a closer look at it.

The docs can't see me today, I just don't know what to do, I can't carry on. I am sat at my desk crying, it is ridiculous but I just can't seem to get a grip today

OP posts:
danTDM · 05/07/2017 10:27

I have all this.
It's menopause.Flowers
It's unbelievable what it does.

danTDM · 05/07/2017 10:29

Am 45 btw.
Having shower or walking to the shops seems an ordeal Sad

UserPlusLongNumber · 05/07/2017 10:42

Is menopause supposed to be that brutal??

alwaysthepessimist · 05/07/2017 10:50

if this is the menopause I don't think I can cope. I really hope it isn't

OP posts:
alwaysthepessimist · 05/07/2017 12:27

Thank you CFSKate reading that was an eye opener.

The GP's have now called me back and I have an appointment for tomorrow - it is with a go I have seen before who last time was very dismissive but he is the only one available so I am going armed with facts & (hopefully) determination

OP posts:
Babyroobs · 05/07/2017 13:42

I don't think you could walk 5k if you have cfs although I suppose it can fluctuate.

Babyroobs · 05/07/2017 13:43

I am 49 and going through the menopause and a lot of your symptoms are similar to mine. Exhaustion, palpitations, poor sleep etc.

Wildthoughts · 05/07/2017 13:48

I have a close relative with cfs/fibromyalgia and they are too exhausted to walk from one room to another and haven't been outside for a year.

I don't know how you would do 5k even walking with cfs. I know there are degrees of it and there are good and bad days but even so.

Can you ask for further tests? Could it be an auto immune condition/arthritis for example? I have had very similar symptoms to yours since menopause including the painful feet.

tich31 · 05/07/2017 22:52

Hi,
My experience is slightly different as it was my young son who had CFS/ME which is slightly different to adult CFS/ME.

Someone in the thread is right it is about excluding all other options and getting a good dr and consultant - vital.

We had a terrible time initially with the wrong paediatrician but then things went right after changing. One of the first things was a full in depth analysis of bloods...right down to mineral defficiency - a huge list. Everything was ruled out and so at that point CFS/ME was a strong contender.

It destroyed my son,s life for a long while but he is now a strong strapping healthy teenager. Such a terrible illness.

I hope you get a diagnosis of some sorts.

alwaysthepessimist · 06/07/2017 12:26

Thank you everyone, I have been today and the gp has said he believes it either CFS, Fibromyalgia or a combination plus the menopause, he initially just basically said he wanted me back on antidepressants but I refused instead insisting that rather than just doing that there must be other stuff, cbt etc etc, in the end he got me to agree to a very small dosage of amytriptiline (or something like that) for the month, I need to go back within 4 weeks for another checkup, in the meantime he also is speaking to someone else about hrt therapy, I am also going to start looking at natural things I can do and I am going to look to speak to a therapist to see what they can offer. So I don't have a diagnosis but this time I don't feel like I have had the dismissal I have had previously

OP posts:
Dani1000 · 07/09/2017 12:43

Hey, how are you feeling?

I'm not a Dr but your symptoms to do sound like 'CFS'. I've been told by 2 different specialists that I have 'CFS' (endocrinologist & immunologist), I'm not convinced as it's not an actual diagnose based on anything other than excluding anything else and seems to be a heading when the Drs cannot find anything else.

For about 5 minutes I was relived that I finally had a diagnosis, but that relieve quickly faded when I realised that no one can actually help me and you are left feeling nothing but frustration. For me, I just can't really accept that I am being told I have something, based on absolutely no actual evidence. My Dr said that I need to accept the diagnoses and that 'denial' was normal, however without actual evidence, I'm not convinced. I'm not saying that the symptoms don't exist, they do for sure and everyday has been a battle, however they are symptoms..we don't know what actually causes them.

I was offered antidepressants by my GP, I think they are given out too easily, I don't have depression but Dr's assume if you have fatigue than it must be depression. If you are depressed then perhaps anti-depressants will help but otherwise I would suggest not taking medication.

Like some of the other contributors have mentioned, I would definitely make sure nothing else is causing your symptoms. This would include tests for; Vitamin D deficiency, Vitamin B deficiency, hormonal imbalance, thyroid issues, food allergies, celiac, cortisol levels, iron deficiency and candida overgrowth. I've had all of these checked and are all fine.

From lots of research, my understanding is that your body and/or mind has been affected by either, an infection/illness, stress/trauma of an accident, or perhaps ongoing stress (mental or physical fatigue) and your body and/or mind literally makes you slow down or stop, by forcing these symptoms onto you - symptoms that cause inflammation of the body.

There is some recent research by the leading Dr in CFS/ME Jose Montoya (Stanford), suggesting CFS is linked to several proteins of inflammation in the body. Another school of thought is a link to the microbiology of the gut.

My personal view is that mental and/or physical stress, particularly over a sustained period of time, compromises the immune system and the body and/or mind spends a lot of time trying to deal with the stress and can no longer cope and as a result produces inflammations such as chronic sore throats, chronic fatigue, brain fog & all the other symptoms etc.

For me, when I look back at my life, I worked long hours in the city, not eating very much, exercising at the gym a lot, spent a lot of time moving from one job to the next (as I didn't like what I was doing but never had a chance to breath to consider 'what next'), moving house quite a few times and some family stuff that went on for a few years which required me to be the main support to my parents. I had bad bouts of viruses here and there over the years and I think that all of these factors contributed to my mind and body shouting "things need to change"!!.

I would highly recommend a book 'CFS Call for Soulwork' by Gretchen Brooks Nassar. It refers to 'The CFS Tree' which lists lots of things that may have contributed to a suppressed immune system (including physical and mental factors) which then lead to all of the CFS type of symptoms. The book refers to CFS as a teacher in how 'to be' and to have an honest look at what the 'roots' to your CFS may be and how this is an opportunity for spiritual growth. That may sound airy fairy but if you read the book you'll see the connections and I do believe the mind and body both contribute to the symptoms that are 'CFS' and how you can heal yourself (a good diet (limited sugar, lots of veg etc, a good probiotic for the gut), exercise, self love (putting yourself first, doing nice things for you), creating meaning in your life etc. You also need time to heal and rest both mentally and physically.

I hope this helps and be hopeful that you will feel better.

L

startravels · 07/09/2017 16:37

Have you had any blood tests?

It sounds similar to an underactive thyroid problem.

I'd also get your iron levels checked.

Looksprettybad · 07/09/2017 19:18

Sounds like my symptoms b4 underactive thyroid was finally diagnosed after years of so-called being borderline/menopausal!

New posts on this thread. Refresh page