Chronic fatigue

[Hickry]

I need to push and try and get my gp to take me seriously. I've been going to the GP with how tired I am for years now and I'm always fobbed off.

Who diagnoses chronic fatigue?
Does a gp diagnose? Do I need to be referred somewhere?

It took 5 years of me complaining of being TTAT, and an appointment with a lovely newly qualified GP, before she finally said she thinks I have CFS and referred me to the chronic fatigue team.
There was a round a 4 month wait to see their person who said it was likely I had it, and that was it. Discharged back to the GP.

Have you seen this page?

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/myalgic-encephalomyelitis-me-or-chronic-fatigue-syndrome-cfs/

It recommends tracking your symptoms in a diary to take to your doctor.
Good luck with it.

Thank you both.

Tracking it is a good idea. I could definitely do that.

Even just the act of getting a gp appointment and getting to it is a challenge in itself but I need to oomph myself up and sort it out.

I'm so down. I used to have this whole life and it's all gone. I feel like Im just existing. 😔

It's a cruel illness. And just to forewarn you that since Covid, all the 'fatigue' clinics are completely overwhelmed so a lot of them have stopped taking referrals.

There's no treatment but they do need to rule out other illnesses first as it's a diagnosis of exclusion.

Are you pacing at the moment? Because that is sadly the best way to manage it

As a psychologist who specialists in chronic illness I would recommend you also find a psychologist (very likely to have to pay privately because nhs doesn’t often have the number of psychologists it needs in CFS so waiting lists are huge) who will help you adapt cope and manage with your symptoms and will help you work toward a life you want despite your illness.
good luck

I have chronic fatigue, so I can sympathise.
In my case it's the worse ongoing side effect from chemotherapy five years ago, along with insomnia.
I've never been able to manage it properly, and it has such an affect on day to day activities.
Pacing works to a degree, but I know if I have a busy day I will be completely wiped out the next.

I have cfs

Paying 250 gbp 4 a private rheumatologist speeded up my diagnosis

You can go private 4 the rheumatologist consultation ( much faster )
& then transfer back to nhs

Longer term // after diagnosis - - its good to get a referal to fatigue services
They often give u an OT

@Hickry Im really sorry. You should probably know that there’s no treatment or cure that any doctor or consultant can offer for chronic fatigue. There will be lots of blood tests to exclude other factors and once there are no other possible causes you may receive a diagnosis. At best this will include referral to a chronic fatigue management clinic (you can find full details of what this would include online), but no medication or other treatment (as there currently isn’t any).
The most useful thing I guess is if you need a diagnosis for time off work or benefits.

If you think the condition is very mild and you just need a kick start to get you going there’s the free Nuffield Covid recovery program. But if you actually have chronic fatigue or long covid this would do more harm than good as pushing your physical abilities makes things worse.

I don't think it's COVID related though I guess the after effects are the same whether it is caused by that or not?

Yes I do try to pace myself. My life has got smaller and slower. I find it massively frustrating.

For me I just am very black and white and I feel like if I am diagnosed officially I can then stop being so hard on myself. I think it will help me mentally to know and be able to accept etc.

Id not considered the long waiting lists but not surprising, they're long for everything aren't they. 🫤

First things first is I guess to try and get in at the GP again. And hope I get one that's willing to listen to me. Fingers crossed.

I know this is an old thread but I am wondering if anyone has had any success by going private for chronic fatigue. dh has been battling with this for over ten years and I am totally fed up with the NHS fobbing him off and telling him he just has to put up with it. If, and this is a big if given he dislikes spending money, I persuade him to go private will they take it anymore seriously and actually look for causes. Would love to know anybodys experiences positive (preferably) but negative as well.

@OneInEight Im very sorry but there is nothing that private health care can offer, there’s nothing at all.
You will find various “alternative” paid for “solutions”, but frankly if these were actual cures for this terrible condition they would have been rolled out on the nhs by now.
The only thing that has given me a little relief (increasing PEM threshold slightly, a little more resilience) is quality CBD and the Zoe diet (look it up, you don’t need to pay, essentially a Mediterranean diet but cutting out as much processed food, carbohydrate, alcohol and meat as possible)

Not what I wanted to hear but thankyou. I think the thing I find most frustrating in dh's case is that three years ago he was given some pills to reduce stroke risk and they, as an unexpected side effect, actually did relieve partially the tiredness for a couple of years despite being told for years there was nothing the medical profession could do. Clearly there was. Now he is sadly going backwards again - not quite reached his lowest point but well on the way. So basically I feel that the NHS does not do enough in eliminating other causes of chronic tiredness before dolling out the "chronic fatigue" diagnosis.

P.S. I am sorry that you too are suffering from chronic fatigue. It is a really horrible thing to have to endure.

Has he looked into Low Dose Naltrexone? (LDN)? There are also various stimulants that get prescribed in the US but I'm not sure who would prescribe them here

www.harpalclinic.co.uk/functional-medicine/ldn-low-dose-naltrexone/

As with everything for CFS/ME, no treatment is proven for it and it seems to work for some and not for others

I do know people who have actually flown to the US to get some treatment even if it's experimental

It's worth joining the Reddit forum on CFS as there's a lot of info on there

Ahh then that’s a different question OP.
As for treating actual CFS, no the private sector can’t help.
As for more thoroughly investigating any other possible causes, then yes they can. But it would be a how longs a piece of string situation, it could require many investigations before they reach a conclusion, or even ultimately agree the cfs diagnosis.

I forgot yes there is a pharmacy in Scotland and I think one in London that can prescribe low dose naltrexone remotely

What tests have you already had? There's no test for CFS so Dr's diagnose via exclusion so you need to have had extensive testing done first as many many conditions cause fatigue. I went private eventually after many years of being fobbed off and they did an absolute barrage of tests and they found what was wrong. If I hadn't had a diagnosis then the preferred treatment for CFS (CBT) would have been little use as I'd still have had the underlying disease

My son (26) has been diagnosed with CFS or PVF or long covid - the doctors couldn't agree what it was - and basically told to live with it. He's got much worse recently so we are exploring acupuncture and chinese herbs. He has his first appointment next Thursday with a man who trained as a doctor then diversified into acupuncture and herbs. Its £82 plus £58 for follow up appts. Plus, I suppose the cost of the herbs. But tbh I would remortgage my house to pay for this if it works as it's so upsetting seeing him unable to do anything that a 26 year old should be doing as he feels so ill. In his case it's definitely related to his digestive system which is, according to the doctors very sluggish so their solution is for him to take Movicol 5 days a week but none of us consider that a suitable long term solution.

@OneInEight There is a private doctor in Scotland who knows as much as anyone about ME/CFS: Dr Claire Taylor https://www.drclairetaylor.com. She absolutely takes it seriously and can tease out some of the components (eg POTS and MCAS) and prescribe to help with the symptoms. I know several people who have seen her and have improved quite a bit with her help. She has quite a long waiting list though.

Another thing worth looking at is the Visible heart rate monitor and app www.makevisible.com. You have to pay a monthly fee, but the data it gives you is invaluable and can be eye opening for understanding where your energy is going. He could start that straight away and see if that helps him to manage it a bit better.

@XiCi ME/CFS is no longer a diagnosis of exclusion. The new NICE guideline which came out in 2021 says ME/CFS should be suspected if the patient has:

• Fatigue
• Post-exertional malaise (a worsening of symptoms after activity which is often delayed by days and is disproportionate to the activity)
• Unrefreshing sleep
• Cognitive difficulties.

See https://www.nice.org.uk/guidance/ng206/chapter/recommendations

The hallmark symptom is post-exertional malaise, which those of us with ME/CFS know as crashing after an activity and feeling rough for days.

If any doctors aren’t aware of the new diagnosis criteria (many aren’t) it’s quite reasonable to show them the NICE guideline.

If I hadn't had a diagnosis then the preferred treatment for CFS (CBT) would have been little use as I'd still have had the underlying disease

CBT doesn’t treat the underlying disease for us either so it’s just as useless as it would have been for you with whatever else you were diagnosed with. It is no longer recommended as a treatment in the new ME/CFS NICE guideline, though it can be helpful for coming to terms with your life being completely upended.

Thank you for all the posts. I think what we suffer from now is lack of hope he will get better so it does help to have some new avenues to explore.

There's no test and no cure for CFS though is there. Whereas, once I had a diagnosis I was treated and my condition is now manageable. I think a lot of people(especially women) get fobbed off by GPs and are told they have CFS or Fibro a d theyll just have to get on with it when they actually have something else that is treatable. It's just GPs for whatever reason, probably funding, don't do adequate investigation.

That's not to say that the OP doesn't have CFS, just that she should push to ensure that other causes have been looked into because those symptoms also apply to thousands of other illnesses