Hi
Just joined I have been diagnosed with both chronic fatigue syndrome and fibromyalgia in the last 4 years but not sure I have both or either.Also struggling to accept my diagnosis with the absence of any concrete evidence and the fact that both are classed as Syndromes with no definitive cause and of causes no cure.It just seems like a temporary label until a cure can be found.Whatever my illness is I refuse to give up and let it ruin my life 😩
healthunlocked.com/fibromya..., hello there and welcome, I too have fibro and cfs along side treated sleep apnea so can totally relate to how you feel, I do take each day , some not so good but others I can look back and say made life all worth while. It will be good to have a chat here as we are in a very big club nobody wants to be in. If you would like to lock your posts there is a link above for you. Think we all try ways of trying to cope and still get some kind of quality out of our days, not a good combo to have and it’s normally the cfs that will lay me up in bed sometimes just a day but you can quarantee I would have something nice planned even if it’s a couple of hours but yes we will not give up x
It really is tough but keep fighting some things will work better for each individual 👍
Hi and welcome to the forum 😊I found there were many stages of acceptance, you will work through them in your own time. Fibromyalgia is complicated, frustrating and life changing.
Thank you 🙏 waiting for a magic cure 😀
Kev,
I understand your thinking,, I don't think anyone has or is trying and harder than myself as I just don't want to think I will be like this for the rest of my life.
May I suggest you have a look for Professor Arnold Ehret,, you can download his books for free.
It's certaitly not for everyone as it takes a modicum of dedication and changing the eating habits of a lifetime,, but I suspect you'll find it intresting!
Welcome along, Ray
Thanks Ray I will have a look 🙏
Thanks 🙏 it will not beat me but I am realistic and realise I won’t beat it.But I want to be in a place where I can have a good quality of life 🙏
I totally agree keep fighting and see what works best for the individual 🙏
I totally agree let’s kick it’s arse 😂
Sorry to hear you’ve been diagnosed. It’s a bit of a no-mans-land diagnosis isn’t it? Doctors don’t know enough about it yet. One day they will though, hopefully sooner than later!
The only way they will find a cure is by the nhs investing the money to do it.I have done a lot of research over the last couple of years and I am convinced that it is a mitochondrial problem caused by a virus that lays dormant afterwards.This then causes the flare ups for both conditions ☹️ This fits my story and probably many others
I agree that could be a cause. ( i had an unpleasant illness aged nine or ten , streptococci and bronchitis off and on since a baby ) Also i think stress plays a big part , i've had plenty in my life .
It took me at least two years to accept it. I didnt want to say i had it even though it had been diagnosed . I felt if i said so that would make it true. ! Silly but human. Joining this forum has helped me to understand it and learn to pace myself. I've learnt a lot, about other conditions that can go with it , like digestive issues . Also i think the natural pain things i use must help , as I'm often exhausted , but not in pain as many others are . I do have painful days but not very often. Pacing myself enables me to do the things i want to do. Blessings Derby. KT
I agree you have to pace yourself or you will know it
I don’t mind lol 😂
Yes calling it a syndrome means it’s just a collection of symptoms with no proven cause or cure.
No I know sadly it’s true but I am working hard to deal with it in the best way possible.Fight on brother 👍
Welcome to a great site and lovely people ...
Wishing you well Derby.. I take one day at a time and really trying to fight this but get so tired too. I was so active 18 months ago, dancing class, yoga ... I’m going to try Yoga again soon 😊
Very very hard to receive and then accept a diagnosis of "what" lol ..completely relate to what your saying here derby.
Hi,well you've certainly got the right attitude. Hope is my way of dealing with it. I've had it for many years along with CPS, Arthritis and some spine splintering thing I can never remember or spell. So whatever turns up I get the Hope involved.ie..Hope it's not a big flare up.. Hope i don't hurt myself so much today if I fall.. Hope that cake tastes as good as it looks when friend comes here today!!!!. And always i hope that all of you fellow sufferers are coping as best you can .😻 x Maz
Lovely positive outlook, Fibromyalgia is very real but as you say we must not let it define us x
Hi kev
Just read your post try push for GP to rule out Lupus and buy the medical medium books but you need an open mind they will explain everything you need to know and hopefully you can use some of the Information and change your diet and amend your lifestyle 
good luck
Thanks already had a lupus blood test which was clear.I have bought and started to read liver rescue by Anthony William which I’m finding fascinating 👍
Ah right which test did you have as I have been researching and they aren't all 100% accurate ? Yeah liver rescue is good the first book is also good
My sister in law has had fibro for years and tried very high dose of turmeric/curcumin she swears it’s helped her loads she takes capsules not powder or paste maybe try it I can’t tolerate it myself have too many other problems as well but anything worth a try xx
Thank you I will 🙏
I agree had really bad day sat just gone I’m not letting it dictate my life
No it can’t win keep going
Hi, I was told by my GP that I had CF, some years ago, tho this was not noted on my record as far as I can see, it just says TATT (Tired all the time) I was so tired I would get my kids out to school, usually a neighbour taking them, and collapse on the sofa, the mind was willing the body not. I was also struggling with Fibro symptoms and Migraine, amongst other things.
I have hypothyroidism. I reckon I have had it all my life, I saw a specialist back in 1981/2 -who couldn’t make up his mind. I struggled for another 10 years to get a diagnosis and treatment. I got the standard T4 treatment. Over the next 20 years I struggled more and more, the tiredness grew worse and worse, until the GP said it was CF, as mentioned. Migraine started with occasional blind spots, developed over the years to become debilitating. The Fibro the same. Cutting a long story short, when I stopped talking T4 these three main symptoms eased off and within days went away. I sometimes get tiredness and such again, but that is usually down to stress and the impact this now has on my struggling adrenals (due to long term rubbish hypo treatment. But as least I know now what I’m dealing with and can manage it better)
I know thyroid is not responsible for all problems, but low t3 levels will affect so much, as T3 is needed by every cell. If there seems to be no other answer, look at the hormones, not just T3 but all, vitamins and minerals too.
Fibro drove me mad, I was back and forth to the osteopath, who actually suggested Fibro - tho again, never got a diagnosis for it. I spoke to the osteopath re my records the other day, I stopped seeing her in 2012, which fits in with the time I balanced on T3 medication. (as opposed to the rubbish T4) I do suspect that the T4 had a lot to answer for, building up in my system, not being processed properly. T4 toxic. Knock on effect on adrenals. No one should have to live with these symptoms.
Sadly we have gone through decades of ’symptom treating medical ethos’ with no consideration for cause. I suspect that suits the BP - hence they are buying into the DNA companies too, so they can produce more medications to treat symptoms. (not to look for causes) I wish you luck. I wish you well.
I have had every test available on the NHS.ultrasound x rays MRI CT scans and umpteen blood tests.Also seen a neurologist now been referred to a mental health counsellor CBT because I refuse to accept my diagnosis.I have had to push them all the way to get so many tests etc but I will keep going because something causes my symptoms and I refuse to believe that there is no reason and therefore no cure
Hi - firstly, sorry to hear about your diagnosis. Appreciate how grim it can be. I take a pile of pain meds (for fibro and other conditions). And have been to pain mgmt clinics/groups - you may find cbt useful if you approach it with an open mind. It’s offered for all sorts of pain conditions so take what you can out of it (they will often teach mindfulness techniques which I personally find effective).
I always find the notion of acceptance difficult though. I would push for more tests if you think the diagnosis doesn’t fit. And if you think the your symptoms do fit but are dissatisfied with a diagnosis that often leaves the medical profession shrugging with a “we can’t cure you, we don’t really know how to treat all your symptoms, but you won’t die, so off you go” response, then so you should be. We all need to keep pushing for better answers and accepting that we won’t get them as inevitable is certainly not for me, and I suspect not for you.
But in the meantime accept that you do have disabling conditions, be kind to yourself and find treatments that help you - plenty of suggestions on here.
Big thank you to Scrumbler for sharing info about Dr Oaklander - made my day listening to one of her lectures. Reassuring to know their are some medics out there working to improve our knowledge. And one more thing to mag my GP about...
That's interesting as I think I have signs of them both so how do I get the doctor to refer for further testing ask to refer to a neurologist who specialises in neuropathies as anyone you know had positive results with a consultant and a consultant been good with them?
Dear Derby , Good for you , thats a good attitude and will help you. I find i do have to pace myself but i can make the most of good days and really enjoy them. I have a bad day today but have had my home help and shes got a lot done. I hope to go out tommorrow for most of the day and shall enjoy it. I use gingko biloba ( now in liquid form and that helps me to have more energy for an outing . It also helps with brain fog. On a bad day it helps me through.
I use several natural painkillers which i can tell you about ( if you wish ) and paracetamol which is not too strong . I have enough heavy duty meds for heart and restless legs syndrome not to want to use strong painkillers. God bless you and keep your chin up ! Gentle hugs KT
Thank you I will push it all the way don’t worry
See this, Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis, 2nd Ed.: It's Mitochondria, Not
Yes I agree I’ve given my self a kick up the rear and carried on doing what I like best at the mo being in my kitchen. Gentle hugs to you
I give up!!
im giving up the fight
I give up!!
Giving up work 
Update on giving up work.
