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

[ToffeePennie]

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!

ME/CFS is not a life threatening condition and it isn't an autoimmune disorder. Can you say a bit more what you mean about "beginning of the end".

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.

I had CFS/ME for three years and recovered. It was really, really shit and scary but this was pre-Covid, and I think there is much more support out there now - not just medical but in terms of the way people are treated by medical professionals and wider society.

I was diagnosed with moderate postviral ME after EBV and thought I would never recover, and had some HORRIBLE experiences with doctors (but also some really nice ones) but then I went into remission with the click of a finger after becoming pregnant with DC1. The doctor I saw said this was a common pattern with ME as well as many autoimmune illnesses. Thankfully it never returned.

I am thinking of you, and urging you to have hope through this process <3

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

I have ME/CFS. Doctors have very little understanding of it. It is currently considered to be a neurological illness but it wouldn’t surprise me if somebody discovers it is an autoimmune illness. I think there is some suspicion that it could be.

It is not life threatening but it is very debilitating and has several comorbidities (definite and suspected). I also have POTS, autism and ADHD.

I am too unwell to work and that is the case with most ME patients so YANBU to be very worried.

For lots of fantastic info (in particular in the ‘free literature’ section):

https://meassociation.org.uk/

The ME Association also has a fantastic helpline.

In my experience, most GPs are not overly familiar with ME/CFS so I would wait till your assessment with a specialist clinic.
You may find this website useful The ME Association - The ME Association

I think you may have misunderstand the doctor on several counts, because ME and CFS are not separate things. They are different names for the same thing (ME/CFS). It is not an autoimmune disease, but it may have an autoimmune component. Did your doctor perhaps say they were looking at autoimmune issues and IF that’s negative, then they’ll be diagnosing it as ME/CFS? I can’t say how closely your symptoms align with ME/CFS, but there should be symptom checklists online. Google “ME/CFS symptom checklist.” It also depends what country you’re in. In the UK, they treat it like a real illness and try to help you recover. In the US, everyone they cant figure out gets either a chronic fatigue or fibromyalgia diagnosis, or both 🤷‍♀️

And as many others have said, if you are getting diagnosed then it would be based on symptoms you already had. So if anything, instead of the end of your life, it would be the beginning of getting better. ♥️

Your life won’t change due to you having a new diagnosis. You will remain exactly as you are but your summons can fluctuate. You just have a name then for your symptoms and can access treatment.

Auto immune issues are not the end of the world, I’ve got sjogrens and rheumatoid arthritis. My life is better since diagnosis and I’m on regular medication etc that really reduces my symptoms.

There are things that help. For me it’s a healthy diet, free from processed carbohydrates. I eat plenty of vegetables and fruit, egg, chicken, seafood, nuts and pulses. A typical day is full fat Greek yoghurt with fruit and 7 types of chopped nuts and chia seeds. Prawn/chicken/cheese salad for lunch with various home made sauerkraut/fermented veg. Then a hearty soup from the freezer. Pea and ham/leek and’s potato/lentil and veg/scouse/french onion ( everything has beans or lentils added for protein). For snacks I eat boiled eggs/nuts/cheese/fruit/veg sticks and cottage cheese. Proper black coffee and herbal tea. By eating clean and taking plenty of vitamin c,d3 with k2 and a full vitamin supplement I stay really healthy with my regular self administered injections etc.

it’s scary getting a diagnosis but honestly then you know what you are dealing with. I’m 16 years post diagnosis and never been healthier

There is no test for ME/CFS as such, it’s more a diagnosis made when other issues have been ruled out, based on your symptoms. I’m not sure a GP would necessarily have the specific knowledge to guide you. My sister was diagnosed many years ago when it was quite dismissed by many . She put in a lot of work on her diet, her mental health etc and is now well. It’s not something you are diagnosed with and cured as such, but if you look into it there’s a lot of things you can do to help, and indeed recover from.

You are young and may be able to make bs good recovery from it yet if it is CFS/ME. Have you generally been fatigued or have you experienced a major collapse - eg being bedbound, unable to work etc? I'm assuming not as you mention loving your life and not wanting to change.

I notice you seem to be talking about it like it's a progressive condition that will get worse but that's not how it works. If it is CFS/ME you may find you have to pace yourself and sometimes and it will fluctuate but it actually can get better over time.

My friend had ME/CFS and she recovered - it is not necessarily a life sentence.

People have died from ME

People have died from complications such as malnourishment, secondary infections etc. Me/CFS has various stages of severity and there is a vast number of people with ME live relatively normal lives.
Perhaps, it is unwise to scare the OP with deaths which, wile tragic, are vanishingly rare and are usually due to other co-morbidities.

Hey could you give me a link for it? I can’t find a single case of death “from” ME/CFS that was not related to: suicide, cardiovascular issues, malnutrition. And even in the case where someone died of malnutrition, they had refused hospital treatment and because she had capacity, she was allowed to make that choice. But unfortunately yes, it cost her her life.
https://www.bbc.co.uk/news/articles/cnvyj2vezgqo

ME/CFS may cause serious symptoms (malnutrition) that you need to treat seriously but completely by itself, it does not kill people.

They are not auto immune disorders and it’s not life threatening. Yes its shit but your not going to die which is the way your making it out.

I’m sorry, that’s just the kind of scaremongering OP doesn’t need. People don’t die from ME. They may die from other conditions they develop whilst they have ME , a “ Co morbidity “ , but ME itself isn’t life threatening.

ME/CFS is generally diagnosed only when other alternatives have been ruled out.

my dd had a dual diagnosis of hashimoto’s thyroiditis and CFS/ME but this was to enable her to access the NHS CFS/ME support pathway as she was out of school at 16 due to illness when diagnosed.

CFS/ME is more of a description of symptoms than anything else and some people are able to recover totally while others need to pace and work within their limits.

my dd is now ten years on and has a degree and is getting her first job. She will not be able to work full time but she is able to have a life and enjoy it.

Why would it be the beginning of the end and the end of life as you know it? Having a diagnosis won't suddenly make you any worse that you currently are. my advice would be stop being so dramatic.

Actually I think I’ve misunderstood the term co morbidity, however, my point still stands. If you have Vertigo and you walk along a cliff top any fall off and die, it isn’t the Vertigo that’s killed you, it’s the fall !

I’ve got MS and I totally agree with this. Although I’ve not changed my diet at all. But positive attitude is absolutely everything.

You’re correct that ME/CFS is not considered to be a progressive illness but mine has got worse. It varies a lot.

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.

@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

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

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