Trying not to self diagnose myself, but I feel exhausted even after a nights sleep (well, when I say a 'night' I mean a few hours) and seems like I'm ticking quite a few of the symptoms according tothe NHS website.
Got a docs appointment in a couple of weeks to discuss my problems but just wondering of anyone has had any experience of CFS/ME? Mainly around processes to get a diagnosis etc. and any useful info.
Have you looked into Lyme disease?
Would it not be best to wait to see the GP to get the diagnosis? Going to the doctor to get him/her to confirm what you have already decided you've got is not going to be particularly helpful.
has had any experience of CFS/ME? Mainly around processes to get a diagnosis etc.
From close family experience, you don't seem to get a diagnosis of CFS - it's what's left when they've ruled everything else out.
but I feel exhausted even after a nights sleep (well, when I say a ‘night’ I mean a few hours)
Sort that out before looking for anything else. If you're regularly only getting a few hours sleep a night it shouldn't be a surprise that you're permanently exhausted.
bad sleep and tiredness could be all sorts of things - iron deficiency for instance.
Describe the symptoms to your GP as you experience them, not as a series of prompts to lead them to the diagnosis you expect
From close family experience, you don’t seem to get a diagnosis of CFS – it’s what’s left when they’ve ruled everything else out.
This - its a diagnosis of exclusion. Its also very questionable medically. Myself I believe chronic fatigues is not one syndrome but a load of different ones with a large psychological content. Undoubtedly there is something to it.
for me vit D supplementation made a huge difference
I have similar and have been for banks of tests, i often wake up feeling like i am hungover and feel groggy as hell, like i've had no sleep at all, i then go through my day half awake, before wanting to curl up in a ball on sofa in the evening, i get out on my bike but increasingly, my legs feel like they are made out of lead.
I am now off to see an ENT expert as i cannot breathe easily through my nose after breaking it a number of times and snore like a rhino sometimes, so current thinking is sleep apnoea for me, so may another thing to look at, there are "sleep hygiene" experts, so you may feel like you're sleeping well, but are not.
Me! Hi.
From close family experience, you don’t seem to get a diagnosis of CFS – it’s what’s left when they’ve ruled everything else out.
Exactly, although in my case any GP or specialist I've seen hasn't even said "you have this", they've said "well, all that's left is CFS", and as TJ says, it's far more likely that there are myriad different conditions which all manifest in the body simply not working very well.
I'm sorry to say that, on the NHS route at least, you're unlikely to get much support. I've found that once they rule out everything in the Big Book Of Diseases You Can Have, they pretty much give up on you.
Myself I believe chronic fatigues is not one syndrome but a load of different ones with a large psychological content. Undoubtedly there is something to it.
Very much agree with this. A member of my family has pretty much decided this is the issue, completely withdrawn and a monumental amount of other related issues that none of us know how to approach.. They don't trust doctors as they don't tend to immediately go along with their self-diagnosis.
Impossible situation for us remaining siblings. 😐
As said above, i had it that they sent me for blood tests, urine tests etc, and if they come back clear that's it they seem to give up on you, i even paid for private blood tests that looked at more things, but to no avail. i had to keep at them and kept reading up on possible things that it could be and going to them asking them to eliminate them
Trying not to self diagnose myself, but I feel exhausted even after a nights sleep (well, when I say a ‘night’ I mean a few hours) and seems like I’m ticking quite a few of the symptoms according tothe NHS website.
I'm not a Dr but I reckon if you're only sleeping a few hours a night then that's why you're tired.
Me! And spent some time visiting the specialist clinic at Leeds once I finally got a referral.
Brain fog, couldn't read, think straight or make the simplest decision, fibromialgia and joint pain, total exhaustion.
Prior to a referral I had blood tests for all sorts of things which turned up nothing as well as testing for sleep apnea.
I was a teacher at the time and at right away my GP put it down to stress and depression despite me having episodes of post-viral fatigue previously. I was sent for CBT for depression despite saying I wasn't and it was the 'therapist' who said this isn't depression or stress and first mentioned CFS/ME.
Later I was actually diagnosed with a sleep disorder , periodic limb movement disorder, via a sleep clinic.
Lost my job, was on incapacity for a few years before finally getting back to part time work and then full-time work, but I still struggle both with brain fog and general exhaustion especially at times when I get poor sleep like camping.
Its a very umbrella diagnosis that varies between individuals how it affects you and so what strategies can help manage and recover from it vary too.
There are some great resources on the web and YouTube, but I think without doubt the first step is to address sleep, stress and over-stimulation (both physical and mental).
I tried all sorts of nutrition and supplements and elimination diets which did nothing. Lightening Process did really help me (family paid the cost). The biggest help was Leeds CFS centre who help assess what was going on and worked to create a recovery plan based on what helped or hindered and how much of what I could manage with periods of relaxation and meditation and how to build up my activities with pacing.
The various meds (antidepressants and pain killers) they tried did nothing but make me worse.
I'm still my own worst enemy at times over doing it physically cycling and walking and will crash for a period of days or a couple of weeks after a trip away. But I know what I'm doing wrong now and what to do to get back on an even keel.
Have you looked into Lyme disease?
Loling at that being the first response.
Definitely Lyme disease and not one of the several dozen other more likely causes....like stress.
I see for longdog an elimenation diet did nothing but a simple food allergy or intolerance could be a factor. I know someone who becomes lethargic and can barely stay awake in the day if they eat chocolate, or drink even a small bit of alcohol.
If you squeeze your calf muscle quite hard does it really hurt or just feel like pressure. If painfull could be magnesium defiecient.
Loling at that being the first response.
Definitely Lyme disease and not one of the several dozen other more likely causes….like stress.
To be fair cgs responses were limited between "check for Lyme's" and "vinegar"
From my understanding of CFS it doesn’t sound like it to me - you’d be sleeping 14+ hrs several days in a row and still feeling exhausted rather than not sleeping properly and unsurprisingly still being tired.
I hope you don’t have CFS, because even medical professionals will come out with stuff like this:
Myself I believe chronic fatigues is not one syndrome but a load of different ones with a large psychological content. Undoubtedly there is something to it.
He’s probably right with the first (well at least that not everyone diagnosed with CFS has the same underlying cause), but it’s hugely unhelpful to label CFS as a psychological problem. There’s enough stigma in society without professionals suggesting that the problem is the mind not the physiology. Ultimately it can lead to depression but that is a different condition caused in part by the first. If it were psychological it would probably be far easier treated!
Silverneedle, for clarity I did various and some dubious intolerance/allegry testing like applied kinesiology, which seemed to throw up nearly everything!
I tried veggie, vegan even raw food, wheat grass and all sorts of other stuff.
I am wheat intolerant (brother is ceoliac, but not me) but cutting out wheat didn't seem to affect the CFS/ME.
However, going No Grain No Sugar/Low carb/keto without doubt makes me feel so much better generally. I was doing great with it last year before an knee replacement and other health issues left me down and eating crap again. Been trying to get back to it for ages now, but keep falling off the wagon :/
Combo of things with me sleep disorder is major, but on reflection reading the above maybe the wheat and sugar had more of a role to play than I realised! All those diets I tried back then (10-12 years ago) I see were very high carb and I'd have had plenty of wheat too. Doh!
Sleep and diet issues will definitely lead to tiredness, exercise intolerance and poor recovery.
From experience..
Sleep deprivation / sleep debt will make you utterly exhausted. If you are only getting a few hours of sleep then my money is on this.
Loling at that being the first response.
Definitely Lyme disease and not one of the several dozen other more likely causes….like stress.
I didn't read definitely there, just an option to check with unexplained tiredness and (I assume given a bike forum) an outdoor lifestyle. Going to GP with a bunch of symptoms that could be anything and take ages to diagnose, if you mention you are often in tick country then they might check for Lyme. If you don't mention it they won't.
But indeed, it's probably not. Though there's still a lack of awareness with some GPS and dismissal that we don't get it in this county which is very wrong.
That said, not getting much sleep is first on the list and does really explain the tiredness. Have to then to explain why not getting sleep.
For what its worth, I've been having quite a bit of trouble sleeping this spring, Ive found a term called spring lethargy which just about covers it. I've also tried to keep my room as dark as possible so that I don't get woken by the early morning sun.
I have black out blinds, curtains and silicone ear plugs. Ear plugs took a bit of getting used to, but it makes a massive difference to me as I'm such a light sleeper.
He’s probably right with the first (well at least that not everyone diagnosed with CFS has the same underlying cause), but it’s hugely unhelpful to label CFS as a psychological problem. There’s enough stigma in society without professionals suggesting that the problem is the mind not the physiology. Ultimately it can lead to depression but that is a different condition caused in part by the first. If it were psychological it would probably be far easier treated!
The trouble is, if there's absolutely nothing physiological that you can test for then that leaves either:
a) some unknown physiological reason.
b) psychological.
The trouble with A, is that you would expect someone to have found something by now. There would have to be some marker somewhere, deficiencies, metabolites, proteins, anything.
From the outside looking in the stigma looks the other way around, the stigma looks the other way around, people don't want to be told they might be mentally unwell.
https://www.reuters.com/investigates/special-report/science-socialmedia/
Loling at that being the first response.
Definitely Lyme disease and not one of the several dozen other more likely causes….like stress.
Hi Tom. Just thought I'd put that out there cos it's unlikely to be on the NHS radar. I agree that there may well be other causes and these may all be pieces of the jigsaw.
Love c_g
xxxxx
OP - it would be really helpful if before your appointment you obtain a copy of your medical records, you're legally entitled to this. Draw up a timeline and include any major life events such as birth, death, major illness etc. Also include any cycling injuries no matter how minor, see if there's any link with blood tests that have been carried out. Do you know when your insomnia began, detail any changes you've made to your diet, bedtime routine etc.
Going to GP with a bunch of symptoms that could be anything and take ages to diagnose, if you mention you are often in tick country then they might check for Lyme. If you don’t mention it they won’t.
But indeed, it’s probably not. Though there’s still a lack of awareness with some GPS and dismissal that we don’t get it in this county which is very wrong.
Well said deadkenny.
FWIW two friends of mine were diagnosed (eventually) with ME many years ago. One still suffers, though there are a lot of other issues that exacerbate the impact on her. The other fell pregnant and underwent a full recovery from ME by the time the baby arrived.
It's maybe an option to consider 😁
If it were psychological it would probably be far easier treated!
That's a massive generalisation right there.
NOt "psychological illness" But a physical illness with a "large psychological component"
And I will stick to that because of the different manifestations and the differing ways folk cope with chronic fatigue. I have lived with a mild chronic fatigue all my adult life.
Many illnesses that are physical also have a psychological component. different people with the same illnesses react differently mentally. Thats the psychological component.
Holistic medicine recognises that the brain is a part of the body and that how you approach it mentally affects how the illness affects you physically.
All chronic illnesses have a psychological component to them. With Chronic fatigue this psychological component is IN MY OPINION a significant part of it. People with different psychological makeup react to physical illnesses differently
thisisnotaspoon
Member
The trouble is, if there’s absolutely nothing physiological that you can test for then that leaves either:
a) some unknown physiological reason.
b) psychological.The trouble with A, is that you would expect someone to have found something by now. There would have to be some marker somewhere, deficiencies, metabolites, proteins, anything.
NOpe - not necessarily so at all. Medicine has not solved everything. What is unknown is much greater than what is known especially when you get down to complex biochemical reactions on a micro scale. Just because nothing can be found with our current medical tests does not mean a lack of physical illness. Lack of evidence proves nothing.
As above - personally I believe its not a single illness but a load of differing subtle disorders caused by a range of things from Lyme to Vitamin and trace elements deficiencies to subtle flaws in metabolic pathways or faults in nerve conduction and sensory processing.
TJ don’t bring medical expertise into this discussion you’ve got to make wide of mark guesses.
🙂
Its only sort of informed opinion! After all I am a dementia specialist!
I have been thinking about this in relation to myself. I never get the fatigue when out in the mountains even after 2 weeks of daily hard walking. I can now feel the edges of it occurring - I have been off my proper job for a couple of months with and injury and the last few weeks doing a soul destroying paperwork role. So clearly there is a psychological effect on my physical body But its not just psychological - when I tip into the fatigue my lymph nodes become painful. Now that could be nerve and sensory processing issue, infection or auto immune.
Not getting it when doing a lot of walking in the mountains? I believe thats all the serotonin and endorphins that are released. Now doing something much less physical but I am fed up and bored - the symptoms are coming.
In my case it looks like Vit D metabolism plays a significant part as Vit D supplementation has improved things greatly - even stopping the night sweats I get when in the CFS state
I am not saying Vit D would work for all.
Some thought-provoking posts from tj, this especially:
As above – personally I believe its not a single illness but a load of differing subtle disorders caused by a range of things from Lyme to Vitamin and trace elements deficiencies to subtle flaws in metabolic pathways or faults in nerve conduction and sensory processing.
TJ - have you actually been diagnosed as having CFS or are you attributing your general fatigue and assuming you have a medical condition, like someone who suffers from a bit of bloating when they eat wheat declaring themselves coeliac? I'm not sure that is particularly helpful for people who genuinely have the condition either - and it only adds to the difficulties for researching the condition! Are you then also extrapolating your personal experience on n=1 to all the patients who have been diagnosed with the condition? Because generally one of the factors that is associated with CFS is exertion exacerbating the condition whereas you are saying a big day in the hills actually makes you feel better.
For decades people with CFS (or ME as it was more commonly referred to at the time) were told, "we can't find anything wrong with you, it must be in your head". It may well manifest itself as symptoms that then lead to psychological effects, as you say like any other chronic condition (and possibly even more so as having no cause, no reliable treatment and poor understanding even in the professional medical community can only exacerbate the issues). The generally accepted theories seem to be that CFS is immunological/inflammatory rather than a mental health condition. And Notaspoon is correct there is an extra stigma with mental health, but perhaps more upsetting if people suggest your condition is MH or largely in how your brain is dealing with it rather than actually physiological (FWIW, many MH conditions are physiological too - if we referred to bipolar disorder as Lithium deficiency etc, there would probably be far less stigma). I may be mis-interpretting what TJ meant - but when I (and therefore probably a lot of people) infer from "largely psychological" is that with some therapy/counselling/coaching they could probably train themselves to get over most of the symptoms!
Notaspoon - do you mean like elevated levels of cytokines which have been reported fairly convincingly a couple of years ago in patients with CFS (correlation not causation, although I haven't read the full paper).
Poly
You are missing my point. Holistic
I can do it full reply later
In my opinion what you are experiencing is the symptoms of stress. You are now conscious of them and see them as a threat, which is creating more stress, and a viscous circle.
I would imagine that originally something in your life was stressing you, job, relationship, too much coffee, work or whatever. Now that stressor may have passed and what you were left with was the symptoms of that original stressor. If you would have relaxed and let the symptoms go they would have disappeared by themselves over time (if the original stressor was removed), but you became aware of them and are now battling them, which is now creating more stress for you.
Try leaving everything just be as it is. Leave the symptoms be there and just get on with non stressful life things. See how you feel in a month or two?
Poly TJ is doing quite the opposite he’s pointing out that physiological can lead to psychological problems too and vice verse. That you can’t treat one one and ignore the other. CFS is as others have mentioned an umbrella name for a number of conditions that lead to fatigue causes can be from viral symptoms, psychological and a variety of others.
See your GP and blood tests.
Had the same and under active thyroid diagnosed. Having more tests before deciding whether I take thyroxine substitute.
Trying exercise/ride harder and iodine.
Had the same and under active thyroid diagnosed. Having more tests before deciding whether I take thyroxine substitute.
FT3 is worth testing although unlikely to get it done on the NHS. There are (better) alternatives to thyroxine but you'd need to source them yourself.
Poly
I am not saying its all in the mind. I am saying you cannot separate psychological and physical in this sort of chronic illness. they are too closely entwined and that IMO CFS has a large psychological component in how the physical illness affects your life over all
Holistic approach. the body and the brain do not act in isolation from each other. diseases such as CFS the mind has a huge part to play. this is why CBT seems to help some folk. SSRI antidepressants also help some folk with CFS even if they are not depressed.
WE are only scratching the surface of the complex interactions between mental and physical illnesses and the role of neurotransmitters. Exercise makes you feel good by and large ( by releasing some neurotransmitters and hormones and by mopping up others). Thus if you cannot exercise you will not feel as good. The physical and the psychological feed each other IMO
. An illness such as this with vague symptoms and no good medical understanding, psychological factors are bound to play a large part in how the individual reacts. You must have seen people managing chronic pain well and others with similar levels of pain who find it disabling. Its the same sort of thing I refer to here
As for me personally. I have some mild and slight chronic fatigue symptoms. I have been investigated medically several times over the years. If I get tired beyond a certain point especially if stressed as well I collapse into a full blown fatigue state whereby I have had to take significant time off work - not something I do lightly. When I am in the fatigue state my lymph nodes hurt, I get vague muscle pains and horrible lethargy
Do I have a label of CFS on my medical notes - no. do I fit the criteria - probably. could I get that label if I wanted? Certainly. Once everything that could be investigated was and nothing bar low vit D was found then I stopped going down the medical road. I take Vit D and I feel better. How much of the fatigue is psychological and how much physical with me its very hard to tell - as is whether the Vit D is really helping or is it placebo I cannot tell. There is certainly both a physical and psychological part with me. At times I have been mildly disabled by this - unable to do anything bar sleep and work and sometimes not even able to work. At other times is away in the background and hardly noticable. I am fortunate the symptoms generally are slight to non existent
I have read up on this a lot and had a number of long chats with my GP about it.
there is also a huge amount of mumbo jumbo and pseudo medicine around this topic as well. sorting out the good from the bad data is very difficult. there is no medical consensus
To reiterate - I am not saying its not a physical illness. I am saying that psychological factors play a large part in how disabling this is for people and how they react to it.
again IMO there is not one CFS illness. I believe it to be a range of different things with similar symptoms
Yet another thing to consider is environmental factors. Do you sleep with a window open so you are getting enough fresh air at night? Have you had new carpets fitted recently? CFS and MCS are related conditions and some people cant handle the gassing off of chemicals from carpets / new car ineriors perfumes and sprays etc and can get wiped out by that.
Gut flora and health is another avenue to look at. Getting a variety from different sources of fibre, fermented foods etc
Everything @TJagain has said in this thread makes sense, and is worth taking on board. So much so, that I have nothing really to add… but I do have close experience of all this, fitting very closely to his experience and description of the issues surrounding it, except worse (and not with myself). Wise words. Don't dismiss them.
I'll third (fourd, fived?) TJ as well. There is an absolutely huge psychological component to my issues. When my body doesn't work, my brain doesn't either. My body not working means my muscles hurt. My brain not working means I can't think, and my mood is destroyed. That is a physiological issue having a direct psychological impact.
And that is quite aside from the other source of psychological harm, which is that the conscious awareness of my symptoms, causes further mood issues because I'm stressed and upset about the fact that I'm stressed and upset, and so on and so on.
I often get asked by people "How's your health?" and then almost immediately after "And how's your state of mind?" and I have to try to keep hammering the point home that they are the same thing. I view them all - mental and physical, leg pain and depression - as symptoms of the exact same condition.
Interesting video here from Anna Glowinski. Remember her? She kinda dropped off the radar due to fibromyalgia. Her video explains her recovery and points to a physical reaction to psychological stresses in her life. Sample size of one I know but interesting that the mind can initiate such dramatic symptoms on the body.
There is 100% correlation between your automatic thinking, belief in your thinking, fear of your thinking, physical manifestations of your fears and fear of your physical symptoms = Feedback Loop easily stuck in.
Constant anxiety will make you fatigued.
I personally wouldn’t research it, you’ll just go round in circles. Let the Dr diagnose you, stop fighting your symptoms and do relaxing things. Easier said i know!
