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!

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

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

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.

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.

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!!

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.

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.

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'

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

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.

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

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

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.

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.

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

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

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

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)

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

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?

I can do - I work for myself, but it will hurt my pocket and a lot of my clients if I were to close up more than I already have.
When it became obvious I was struggling with sleep, I started taking Mondays and either Wednesday or Thursdays off work totally so I would have time to feel better, but even doing that seems to not be enough, which I think is because I have to take 6-8 clients a day to remind in business/profitable.

I am on HRT, and I cannot have another coil, given that when I first had one it didn’t work and made my periods much heavier, they’ve said my cervix is too tilted for another insertion to be successful, not to mention remaining fibroids. . I’ve been dealing with the period things for over 4 years now and am mostly there to getting a hysterectomy. I take HRT, POP and have a Prostap injection every 3 months, plus a load of northisterone to try and stop my periods totally.

I was diagnosed (by senior NHS consultant and specialist) with ME/CFS and recovered to full health. This is not unusual.

What approaches did you use to get back to health?