Page 2 | AIBU to be terrified about starting an ME/CFS diagnosis pathway?

ClairDeLaLune · 25/03/2026 20:49

ToffeePennie · 25/03/2026 20:23

Thank you all, everyone has given me things to think about.
My current symptoms are (issues with my periods and I’m in perimenopause aside) I’m constantly tired - I can nap, wake from the nap, have a shower and need to sleep again. I’m just exhausted all the time. It’s effecting my ability to work properly because I’ve almost fallen asleep just blinking.
I’m not absorbing vitamins and nutrients from my food, anything I do manage to metabolise is gone straight away. Lack of good quality sleep: when I sleep I have an “active brain” and don’t fall into a proper deep sleep or rem cycle. I’m constantly cold and am permanently shivering because of how cold I am - I am currently under 4 blankets and still shaking with cold.
Joint pains in my hands/fingers/shoulders/knees and ankles.
I have serious, debilitating mental fogginess, which is wild because I was doing ameteur dramatics and could remember scores, lines and all sorts - I can’t remember one scene currently. I make mistakes with work, I actually sold an appointment 3 times over without actually writing it down. So that’s really scary.
I guess I just wanted to know if this was a life long sentence or not, but thanks to the replies I can now see that it depends on the actual diagnosis and how well I can adapt my lifestyle (which isn’t well suited to rest right now).
thanks to everyone for the signposting to ME charities too!!

Have you considered HRT? And maybe a Mirena coil? Those could help with the period, peri and brain fog issues. Also what are your iron, calcium and vitamin D levels like?

User79853257976 · 25/03/2026 20:49

ToffeePennie · 25/03/2026 09:56

Well, given that the Doctor I saw yesterday said specifically “we are looking at auto immune disorders. The two we are looking at are CFS and ME” and then told me I could google how people cope with a pathway, gave me access to talking therapies and several blood tests, I’m only able to go off what was said.
The beginning of the end of my life as I know it.

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But if you’ve already got the symptoms you are already dealing with it.

Octavia64 · 25/03/2026 20:49

It may be worth trying to get two thyroid panels six months or so apart.

my dd has hashimoto’s and it goes in flares so her thyroid panel will be normal and then go wildly out of sync and then go back to normal.

her thyroid is pretty much burnt out now but the process of burning out wasn’t linear and it took comparison of two panels taken a year apart to spot it.

a single panel if taken during a period of relative inactivity shows normal-ish hormones.

worth thinking about (esp as your symptoms are classic thyroid)

Flowerfairy13 · 25/03/2026 20:47

ToffeePennie · 25/03/2026 20:44

So I’ve had a full pannel for thyroid and a full iron/anaemia work up. Both came back low but nothing “too” low. Which is so weird because I feel so crap.
I get a lot of my stuff isn’t specific to ME/CFS but I am under the gynae for my period issues and I think a lot of hormone related stuff kind of crosses over too.
I think it’s the tiredness - I can work but once I’ve seen 1 client, I need to decompress and just sit for an hour or so after. So today I’ve seen 5 clients, and spent the entire evening sat on the sofa, so drained I can hardly move. I managed to read to my littlest, but then couldn’t serve up tea. It’s so frustrating.

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Make sure you get a copy of your test results (they should be on the NHS app if you are in England).

TheBlueKoala · 25/03/2026 20:47

@ToffeePennie Can you go part time? And plan your work so that you have sufficient time to reset/recover?

Hazelmaybe · 25/03/2026 20:46

If you are not absorbing vitamins and micronutrients can they find out why? I know someone who had this and had gastroenterology referral and tests and found out they had some issues which were sorted out with antibiotics and motility meds plus some injections

Original poster

ToffeePennie · 25/03/2026 20:45

FeelingSadToday1 · 25/03/2026 20:39

What have they tested for so far OP. Have they done coeliac screening?

Yep. I thought of that as soon as the GP mentioned auto immune disorders as my aunty (by marriage) has coeliacs. But the screen came back negative.

OP posts:

Original poster

ToffeePennie · 25/03/2026 20:44

Flowerfairy13 · 25/03/2026 20:33

This absolutely sounds like it could be a thyroid issue and many Thyroid patients get misdiagnosed with things like CFS and Fibro.
If i were you, if get a full thyroid panel tested privately (medichecks or similar) and see the outcome. You can find lots of help on the Thyroid UK site. Beware many GPs do not know much about thyroid conditions and will only test TSH, then declare you are 'fine'

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So I’ve had a full pannel for thyroid and a full iron/anaemia work up. Both came back low but nothing “too” low. Which is so weird because I feel so crap.
I get a lot of my stuff isn’t specific to ME/CFS but I am under the gynae for my period issues and I think a lot of hormone related stuff kind of crosses over too.
I think it’s the tiredness - I can work but once I’ve seen 1 client, I need to decompress and just sit for an hour or so after. So today I’ve seen 5 clients, and spent the entire evening sat on the sofa, so drained I can hardly move. I managed to read to my littlest, but then couldn’t serve up tea. It’s so frustrating.

OP posts:

Flowerfairy13 · 25/03/2026 20:40

Yes could be for sure, or both! Many thyroid patients have low levels.of essential nutrients as we dont absorb them well from food. So Iron, b12, Vitamin D are often low

FeelingSadToday1 · 25/03/2026 20:39

What have they tested for so far OP. Have they done coeliac screening?

TheBlueKoala · 25/03/2026 20:37

Flowerfairy13 · 25/03/2026 20:33

This absolutely sounds like it could be a thyroid issue and many Thyroid patients get misdiagnosed with things like CFS and Fibro.
If i were you, if get a full thyroid panel tested privately (medichecks or similar) and see the outcome. You can find lots of help on the Thyroid UK site. Beware many GPs do not know much about thyroid conditions and will only test TSH, then declare you are 'fine'

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Could be. Or iron deficiency. Thyroid and iron was the first tests my GP prescribed. Still am exhausted with brainfog as the OP. Luckily I don't work (1 dc autistic) because I don't know how that would be possible when I have to nap in the afternoon in order to even speak. @ToffeePennie You are not alone.

HealthyChoicesHard · 25/03/2026 20:35

Flowerfairy13 · 25/03/2026 20:33

This absolutely sounds like it could be a thyroid issue and many Thyroid patients get misdiagnosed with things like CFS and Fibro.
If i were you, if get a full thyroid panel tested privately (medichecks or similar) and see the outcome. You can find lots of help on the Thyroid UK site. Beware many GPs do not know much about thyroid conditions and will only test TSH, then declare you are 'fine'

Show quote history

This is a really good point, it’s so important to make sure other things have been ruled out

Flowerfairy13 · 25/03/2026 20:33

ToffeePennie · 25/03/2026 20:23

Thank you all, everyone has given me things to think about.
My current symptoms are (issues with my periods and I’m in perimenopause aside) I’m constantly tired - I can nap, wake from the nap, have a shower and need to sleep again. I’m just exhausted all the time. It’s effecting my ability to work properly because I’ve almost fallen asleep just blinking.
I’m not absorbing vitamins and nutrients from my food, anything I do manage to metabolise is gone straight away. Lack of good quality sleep: when I sleep I have an “active brain” and don’t fall into a proper deep sleep or rem cycle. I’m constantly cold and am permanently shivering because of how cold I am - I am currently under 4 blankets and still shaking with cold.
Joint pains in my hands/fingers/shoulders/knees and ankles.
I have serious, debilitating mental fogginess, which is wild because I was doing ameteur dramatics and could remember scores, lines and all sorts - I can’t remember one scene currently. I make mistakes with work, I actually sold an appointment 3 times over without actually writing it down. So that’s really scary.
I guess I just wanted to know if this was a life long sentence or not, but thanks to the replies I can now see that it depends on the actual diagnosis and how well I can adapt my lifestyle (which isn’t well suited to rest right now).
thanks to everyone for the signposting to ME charities too!!

This absolutely sounds like it could be a thyroid issue and many Thyroid patients get misdiagnosed with things like CFS and Fibro.
If i were you, if get a full thyroid panel tested privately (medichecks or similar) and see the outcome. You can find lots of help on the Thyroid UK site. Beware many GPs do not know much about thyroid conditions and will only test TSH, then declare you are 'fine'

HealthyChoicesHard · 25/03/2026 20:33

ToffeePennie · 25/03/2026 20:23

Thank you all, everyone has given me things to think about.
My current symptoms are (issues with my periods and I’m in perimenopause aside) I’m constantly tired - I can nap, wake from the nap, have a shower and need to sleep again. I’m just exhausted all the time. It’s effecting my ability to work properly because I’ve almost fallen asleep just blinking.
I’m not absorbing vitamins and nutrients from my food, anything I do manage to metabolise is gone straight away. Lack of good quality sleep: when I sleep I have an “active brain” and don’t fall into a proper deep sleep or rem cycle. I’m constantly cold and am permanently shivering because of how cold I am - I am currently under 4 blankets and still shaking with cold.
Joint pains in my hands/fingers/shoulders/knees and ankles.
I have serious, debilitating mental fogginess, which is wild because I was doing ameteur dramatics and could remember scores, lines and all sorts - I can’t remember one scene currently. I make mistakes with work, I actually sold an appointment 3 times over without actually writing it down. So that’s really scary.
I guess I just wanted to know if this was a life long sentence or not, but thanks to the replies I can now see that it depends on the actual diagnosis and how well I can adapt my lifestyle (which isn’t well suited to rest right now).
thanks to everyone for the signposting to ME charities too!!

Really sorry to hear this. Just a thought, has dysautonomia or POTs been mentioned to you? It causes fatigue, mental fogginess and problems with temperature control. It might be something to ask about/consider as it’s often co-morbid with ME/CFS and there are some medications that can help some people. POTs UK website is useful. Unfortunately, so far as I’m aware (and if I’ve got this wrong others please jump in) a big plank of managing ME/CFS is reducing energy expenditure (physical/mental/emotional) with the hope of gradually increasing this again. You might be aware already, but if not you can look up “pacing”. It’s very very hard to manage that with a full-on job plus family responsibilities. Others might be able to share advice on how they managed this.

HealthyChoicesHard · 25/03/2026 20:27

Redbushteaforme · 25/03/2026 20:17

I had it for more than ten years during my 20s and still managed to work full-time though needed to rest at weekends. I think I am still prone to fatigue after flu etc but learned a long time ago about pacing myself. I also researched nutrition in my 20s and eat a healthy diet which I think helps a lot. (Avoiding gluten and coffee and limiting alcohol also helps me.)

People have it to differing degrees but it is now accepted as a condition by the NHS and there are NICE guidelines for managing it. Make sure you access specialist NHS support as many GPs and general consultants may not be aware of current thinking.

It will not necessarily get worse and may improve. We can't tell from your post how badly you are affected but, as with most health conditions, doing your own research and taking proactive steps can help.

Try not to panic. You have been given a label for what you are experiencing which should help you access support. The term 'pathway' is perhaps alarming you more than it needs to. It is very different from getting eg a cancer diagnosis and more a situation where you should now have access to help for your current symptoms and managing your condition.

Edited

I broadly agree with you and especially that looking into pacing, diet etc. can be really helpful. I would say the comparison to cancer diagnosis is not very helpful as it’s a totally different situation and could be read as minimising the OP’s situation. Also, following on with my point above about realistic optimism, it is often incredibly difficult to access specialist care or help for ME/CFS and related conditions and individuals often have to navigate their own health journey with minimal support. That’s not to say a diagnosis might not be useful to access care, but it’s often not.

Original poster

ToffeePennie · 25/03/2026 20:23

Thank you all, everyone has given me things to think about.
My current symptoms are (issues with my periods and I’m in perimenopause aside) I’m constantly tired - I can nap, wake from the nap, have a shower and need to sleep again. I’m just exhausted all the time. It’s effecting my ability to work properly because I’ve almost fallen asleep just blinking.
I’m not absorbing vitamins and nutrients from my food, anything I do manage to metabolise is gone straight away. Lack of good quality sleep: when I sleep I have an “active brain” and don’t fall into a proper deep sleep or rem cycle. I’m constantly cold and am permanently shivering because of how cold I am - I am currently under 4 blankets and still shaking with cold.
Joint pains in my hands/fingers/shoulders/knees and ankles.
I have serious, debilitating mental fogginess, which is wild because I was doing ameteur dramatics and could remember scores, lines and all sorts - I can’t remember one scene currently. I make mistakes with work, I actually sold an appointment 3 times over without actually writing it down. So that’s really scary.
I guess I just wanted to know if this was a life long sentence or not, but thanks to the replies I can now see that it depends on the actual diagnosis and how well I can adapt my lifestyle (which isn’t well suited to rest right now).
thanks to everyone for the signposting to ME charities too!!

OP posts:

Redbushteaforme · 25/03/2026 20:17

I had it for more than ten years during my 20s and still managed to work full-time though needed to rest at weekends. I think I am still prone to fatigue after flu etc but learned a long time ago about pacing myself. I also researched nutrition in my 20s and eat a healthy diet which I think helps a lot. (Avoiding gluten and coffee and limiting alcohol also helps me.)

People have it to differing degrees but it is now accepted as a condition by the NHS and there are NICE guidelines for managing it. Make sure you access specialist NHS support as many GPs and general consultants may not be aware of current thinking.

It will not necessarily get worse and may improve. We can't tell from your post how badly you are affected but, as with most health conditions, doing your own research and taking proactive steps can help.

Try not to panic. You have been given a label for what you are experiencing which should help you access support. The term 'pathway' is perhaps alarming you more than it needs to. It is very different from getting eg a cancer diagnosis and more a situation where you should now have access to help for your current symptoms and managing your condition.

HealthyChoicesHard · 25/03/2026 20:06

Kingfisherfan65 · 25/03/2026 20:00

Having a diagnosis won't affect the course of it though.

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I agree with you, although no one wants to be diagnosed with any illness, let alone ME/CFS where there is such little research and lack of a clear treatment path. So I can understand that the OP is scared, and that’s a rational reaction.

Kingfisherfan65 · 25/03/2026 20:00

HealthyChoicesHard · 25/03/2026 19:09

I think it depends on how severely you have it? As apps have said, it’s on a scale where some people are able to live a fairly normal life and others are extremely debilitated, it varies by person and over time. None of us knows how the OP is affected

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Having a diagnosis won't affect the course of it though.

HealthyChoicesHard · 25/03/2026 19:09

Kingfisherfan65 · 25/03/2026 19:07

Honestly, there is nothing to be scared of. Getting a diagnosis doesn't mean you will get worse. I was diagnosed with it in my mid 20s and I was relieved to know what was wrong with me. I am now 60 and have lived a more or less normal life, I have just had to adjust and learn when I need to take it easy.

I think it depends on how severely you have it? As apps have said, it’s on a scale where some people are able to live a fairly normal life and others are extremely debilitated, it varies by person and over time. None of us knows how the OP is affected

Kingfisherfan65 · 25/03/2026 19:07

Honestly, there is nothing to be scared of. Getting a diagnosis doesn't mean you will get worse. I was diagnosed with it in my mid 20s and I was relieved to know what was wrong with me. I am now 60 and have lived a more or less normal life, I have just had to adjust and learn when I need to take it easy.

HealthyChoicesHard · 25/03/2026 18:58

Just to add on realistic optimism, you can google “stockdale paradox” to find out more. I’m really hoping for a good outcome for you x

HealthyChoicesHard · 25/03/2026 18:52

FalulahTalulah · 25/03/2026 10:02

You’ve got to reframe those negative thoughts! If you think it’s ’the beginning of the end’ then it will be. You are what you think. https://www.self.com/story/neuroscientist-science-behind-manifestation

This is interesting. May I ask do you have a chronic fatiguing illness like ME/CFS? I think the trick to surviving and doing well mentally is, yes, having goals and dreams but also having radical acceptance of the here and now. So having to accept (over and over) when a goal isn’t possible right now. I think ACT is more helpful

HealthyChoicesHard · 25/03/2026 18:47

@ToffeePennie I’m really sorry you’re going through this, and you’re totally valid to feel scared. As PPs have said, ME and CFS are different names for the same set of symptoms (it’s not a diagnosis of a disease because the underlying cause isn’t known yet.) There are some very insensitive comments on here. Yes it’s not considered to be a life-threatening condition, but you are rightly concerned about quality of life. Some PPs have other conditions which have much better researched treatments and outcomes too, so their experience will be very different. As PPs have said, and as has been my own experience, it is possible to recover and/or improve your symptoms if you get the diagnosis of ME/CFS. Lessons I have learned in case this is helpful-1. You will probably have to fight very hard to get medical/financial or other support (that seems to be a common issue across many conditions), 2. you’re likely going to have to think outside of the box and try new things-e.g. other PPs have mentioned dietary changes can help 3. Try to educate yourself (PPs have mentioned the ME website) reach out for help and support as much as you can whether that’s from friends and family or online support groups 4. Positivity-I think this is over-sold. I think perseverance and realistic optimism are what’s needed. I think people who are too positive and want to think about the reality of things bring shit, can’t really cope well especially if it’s going to take time. I really wish you all the best xx

Locutus2000 · 25/03/2026 18:46

ToffeePennie · 25/03/2026 09:50

I’ve been told I’m now on the diagnosis pathway for auto immune disorders, specifically ME and CFS. Possibly a few other things, but those two specifically. The doctors do not think it could be anything else, this is their last chance at a diagnosis.
I am terrified. My immune system is crap anyway, due to me being 1/10 born with my specific heart condition and the only female with the condition ever.
Im really worried this could be the beginning of the end but im only in my 30s and I have children and a DH and a life I love.
Any sensible advice welcomed!

The doctors do not think it could be anything else, this is their last chance at a diagnosis.

ME/CFS is a 'diagnosis of exclusion' - as another said it will only be given once an actual autoimmune issue has been ruled out, along with anything else which could explain your reported symptoms. There is no test for it.