Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

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

75 replies

Hickry · 06/12/2023 11:35

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?

OP posts:
Priggishsausagebore · 27/07/2024 11:47

MysteryofNils · 27/07/2024 10:47

@OneInEight to quote Maeve Boothby O'Neill 'I only wish I could have been a more treatable patient'

Killed by ME, the terrible illness that divides doctors

www.thetimes.com/article/5c99aef7-7c9b-4076-894e-f492d9ede4dc?shareToken=b6db2fb44bf5ce211384044052b9ffd6

Has he tried a fatigue coach? I have a recommendation if you'd like it. I found it a bit frustrating but I know a lot of people found it very useful.

@MysteryofNils could I have that recommendation please?

MysteryofNils · 27/07/2024 12:00

Actually I'll put it on here. I did a few sessions with her and it did make me re think my day/ my week and I now do forward planning for my energy which I think is starting to pay off. I was in a massive crash in May but I'm slowly coming out of it now. She gave no false promises etc but it was useful hearing about how others have recovered or at least got a bit better because earlier this year, I thought I might never leave the house again!

www.pamelarose.co.uk

TeaAndStrumpets · 27/07/2024 12:03

MysteryofNils · 27/07/2024 10:47

@OneInEight to quote Maeve Boothby O'Neill 'I only wish I could have been a more treatable patient'

Killed by ME, the terrible illness that divides doctors

www.thetimes.com/article/5c99aef7-7c9b-4076-894e-f492d9ede4dc?shareToken=b6db2fb44bf5ce211384044052b9ffd6

Has he tried a fatigue coach? I have a recommendation if you'd like it. I found it a bit frustrating but I know a lot of people found it very useful.

@MysteryofNils I have been following that case with horror. Poor girl.

EmilyGilmoreCardiganEnergy · 27/07/2024 12:04

@Skybyrd Thankyou that is very helpful, I'm currently going through diagnosis but am struggling to find where I fit.
I suppose it's process of illumination.

MysteryofNils · 27/07/2024 12:05

I'm not doing it anymore tbh (I am watching the pennies etc) but I did read a lot of the material on her site. A big step for me was acceptance I think. For a long time I was convinced I was just going to recover. Now I have accepted I probably won't but I do want to make my life as bearable as possible.

I've also just finished contributing to a study to see whether people with ME have HHV6 plus I'm in decode ME. I have hope that the research into Long Covid that's going on finds some new treatments. Fingers crossed!

Swanhilde · 27/07/2024 12:08

@AgnesR good luck.

Like I said, they have made a huge difference to me. My arms and legs were so painful before but I've now been able to significantly cut down on the amount of painkillers that I take. The 'soreness', weakness and heavy feeling continues, so I know that it isn't 'curing' anything, but it helps and at this point, I'll take anything that does that.

AgnesR · 27/07/2024 12:11

@Swanhilde thank you! And actually that sounds amazing as the pains are really debilitating at the moment. I was too worried about worsening fatigue and weight gain to start mine…will definitely try that unless the fluoxetine works well!

Swanhilde · 27/07/2024 12:19

@AgnesR I figured nothing was going to make my fatigue any worse! I do take them at night though and they haven't impacted my sleep, which (touch wood) is okay. The only side effect I had was feeling sick for the first two weeks, but that has thankfully now passed.

Hope it provides you with some relief too.

BurnerName1 · 27/07/2024 12:50

One of the reasons antidepressants can help are because some (if not all) have an antiinflammatory effect on the brain.

Inflammation is the root of many evils throughout the body including the nervous system. ANYTHING you can do to reduce inflammation will help you. Water, clean diet, gentle exercise, meditation and general stress reduction. Therapy to heal trauma can help.

You NEED to believe in your capacity to recover. With ME / CFS it is within your gift to improve your symptoms substantially. People with CFS often fight this knowledge because they are exhausted from trying and feel like nothing will work. It will but it takes patience, perseverance and time.

One more thing: reduce saturated fat. Eliminating meat and dairy help a lot here.

FlowerBarrow · 27/07/2024 13:06

🙄🙄 what a crock - I certainly don’t need to hear victim blaming on here as well as in the wider world

OneInEight · 27/07/2024 13:12

Why would you not just give an anti-inflammatory then rather than an anti-depressant if that is the key factor?

MysteryofNils · 27/07/2024 13:24

Ignore them

There's always one who thinks we can think ourselves better! If only!

BurnerName1 · 27/07/2024 13:27

OneInEight · 27/07/2024 13:12

Why would you not just give an anti-inflammatory then rather than an anti-depressant if that is the key factor?

Honestly? Excellent question. I think the balance of risks are weighed up. Many people feel boosted by steroids but the risks outweigh the benefits. I read recently that antidepressants can specifically reduce inflammation in the brain. It's probably why they can be beneficial even when a person doesn't feel depressed - because reducing inflammation in the brain is beneficial for other symptoms.

Diet (especially high fibre) is really important for reducing inflammation. Ditto reducing any inflammatory foods. Stress is inflammatory. So many things cause inflammation including smoking and high BMI. It's a multi-pronged approach.

This is categorically NOT about victim blaming it is about self-empowerment. It is about believing that YOU can make a difference to your symptoms. That belief isn't about magical thinking it's about having the faith to make choices that will heal you not harm you over time. Marginal gains add up.

BurnerName1 · 27/07/2024 13:37

Many people recover considerably from CFS but the problem is they get on with their lives rather than sitting about online. When they do go online to try and offer encouragement they get so much pushback they usually back away. As I probably will. But to anyone who wants to reach out to me in pm I invite you to.

The casual way some of you dismiss what I'm saying makes me eyeroll. Do you think you're the only ones with lived experience? Don't underestimate neuroplasticity. Your brain is literally designed to find new pathways to do things.

Skybyrd · 27/07/2024 14:46

BurnerName1 · 27/07/2024 13:37

Many people recover considerably from CFS but the problem is they get on with their lives rather than sitting about online. When they do go online to try and offer encouragement they get so much pushback they usually back away. As I probably will. But to anyone who wants to reach out to me in pm I invite you to.

The casual way some of you dismiss what I'm saying makes me eyeroll. Do you think you're the only ones with lived experience? Don't underestimate neuroplasticity. Your brain is literally designed to find new pathways to do things.

I believe in my ability to recover. I'm an optimistic, cheerful and was (before CFS,) extremely energetic and active person. However my positive approach hasn't made a blind bit of difference to my symptoms. In fact it's made things more difficult due to constant frustration at my failure to make myself recover. For me, the ONLY thing that has helped is learning to accept that this is how I am today and that tomorrow will be better if I am rigorous about pacing myself today. From what I've read that's a common experience. Even NICE now recommends that CBT is only used to help patients to come to terms with the condition, rather than to help them recover from it. Because the latter has been shown to be ineffective and unhelpful.

There is some evidence that SSRIs help some people with CFS, but no-one knows for sure why that is. We also don't really know what causes CFS. There is a lot of speculation and some research has shown correlation between, for example, brain inflammation, mitochondrial dysfunction, various other conditions and CFS, but correlation is not the same as causation.

Neuroplasticity is indeed amazing and is particularly helpful with conditions that are purely neurological in origin, such as brain damage from injuries or illnesses, but it has it's limits. Otherwise all illnesses and and mental disabilities would be wiped out by the brain building new pathways with which to heal the body.

It's really unkind to tell people that recovery is possible of they only do x, y or z. That simply isn't true and it's rather difficult to 'get on with your life' when you don't even have the energy to sit up or (as that poor girl above), chew and swallow simple food.

ETA, maybe I missed them and I'd be delighted to be proven wrong, but I haven't seen any large scale, peer reviewed studies or reviews that have shown a clear cause of CFS, only many smaller ones that use 'suggest', 'indicate' or similar terms in their study conclusions.

MynameisML · 27/07/2024 14:50

Go to the ME Association for advice on this. There is also a book you can buy from them I think for about £10 - very useful.

ArseInTheCoOpWindow · 27/07/2024 15:07

BurnerName1 · 27/07/2024 13:27

Honestly? Excellent question. I think the balance of risks are weighed up. Many people feel boosted by steroids but the risks outweigh the benefits. I read recently that antidepressants can specifically reduce inflammation in the brain. It's probably why they can be beneficial even when a person doesn't feel depressed - because reducing inflammation in the brain is beneficial for other symptoms.

Diet (especially high fibre) is really important for reducing inflammation. Ditto reducing any inflammatory foods. Stress is inflammatory. So many things cause inflammation including smoking and high BMI. It's a multi-pronged approach.

This is categorically NOT about victim blaming it is about self-empowerment. It is about believing that YOU can make a difference to your symptoms. That belief isn't about magical thinking it's about having the faith to make choices that will heal you not harm you over time. Marginal gains add up.

I was in a high dose anti depressant when l became ill. It has made no difference to any brain inflammation.

Ive been trying to believe my symptoms away for 3 years. It hasn’t worked.

BurnerName1 · 27/07/2024 16:14

I don't understand why people think I'm saying 'believe your symptoms away'. I'm saying believe you have some agency. Change the things you can change.

We are learning more every day about chronic illness and inflammation. Everything from gut health to lifestyle changes can nudge things in the right direction. The nudges add up. Some of it is likely genetics and hyper-reactive immune systems. Inflammation is the enemy whatever the causes. Eliminate inflammation as much as you can.

@Skybyrd I think CBT can be really helpful but don't rule out deeper therapy, especially trauma therapy or specialist neurodiversity therapy if they are relevant.

I will respectfully step away from this thread now. I wish every one of you improved health and vitality. Believe in your own capacity to make changes a percent at a time. It is hard. I understand much more than you realise how hard it is.

FlowerBarrow · 27/07/2024 17:16

@BurnerName1 your posts are insulting, do you even believe them I wonder?
If your suggestions were in any way a solution don’t you think the NHS and all the research institutions would have cottoned on by now?

AgnesR · 27/07/2024 20:33

I constantly live in hope! Everytime I feel normalish (few hours a month) I am over the moon and think I am better. Then it's back with a vengeance. It's 4 years in now that I am starting to lose my optimism. Reading online has made me feel reasssured in a way that real life hasn't, when I realise I am not the only one, and it's an illness rather tham becoming me more and more incapable.

AgnesR · 27/07/2024 20:35

@Skybyrd I feel similar to you. I had no issues functioning in any way and was always a high achieving and optimistic person prior!

ArseInTheCoOpWindow · 27/07/2024 22:03

I’ve tried loads of stuff to help including accupuncture and TCM, it all made me worse.

When it came to the point that l was to unwell to attend hospital appointments because l didn’t have the energy required. I became pretty desperate.

l decided to try Reiki which l had absolutely no faith in after the previous alternative medicine disasters.

Unbelievably its doing something! I’m still very ill but definitely have had an improvement every week. Not massive, but massive enough to make a difference.

FlowerBarrow · 28/07/2024 05:59

@ArseInTheCoOpWindow that's interesting, had you previously tried and therapies designed to be intensely relaxing?

ArseInTheCoOpWindow · 28/07/2024 09:28

FlowerBarrow · 28/07/2024 05:59

@ArseInTheCoOpWindow that's interesting, had you previously tried and therapies designed to be intensely relaxing?

No.

I mean l’d tried meditation and stuff but that was just like 30 minutes of screaming boredom no matter what l did.

I don’t find it relaxing after the first day of the session. It initially ramps up a lot of the symptoms, but they calm down as the week goes on.

I’d say l’m 15% better after 5 sessions. Prior to that the improvement was just non existent. I still can’t do much, but can do more than l cpuld

PEM after hospital appointments has disappeared, although l still get intense an hour or so after any mild activity it has reduced a bit. I’m a bit stronger and can walk round the house instead of being confined to bed.

The most noticeable difference has been brain fog. It was so severe l felt detached from everything and couldn’t cope with questions or decisions. It was terrible. After 3 weeks of Reiki, l was able to confront the bastards at the council over DD’s EHCP on a zoom. 2 weeks earlier l wouldn’t have had the energy or clarity to do this. The brain fog has continued to clear and now l feel much brighter and clearer. Some strength is returning also.

I think l have LC though.

ArseInTheCoOpWindow · 28/07/2024 09:36

Intense aching

Its been less successful with pain symptoms. I get a lot of headaches and stomach pain. But l can sort of semi function in a very small way instead of being helpless in bed.

New posts on this thread. Refresh page