Struggling despite no formal diagnosis

[WytchHazel74]

Hello all. I do feel a bit of a fraud because I am still waiting for a formal diagnosis for what’s wrong with me, but some months ago my GP referred me for an ME/CFS assessment and, looking into it, my symptoms unfortunately fit this better than any of the other suggestions over the past 8 years.

I am coming out of a massive flare up which started in October (so 8 months and counting) but I’m struggling mentally more than physically right now. Pain meds help but can’t ease the exhaustion and brain fog. In fact I think I’m some ways they encourage me to physically overdo things which has a knock on effect.

I don’t really know why I’m posting all this - I think I did have a point but I can’t remember what it was, lol - but I guess part of it is feeling so alone, particularly since I’m in limbo without a diagnosis, and I just wanted to reach out into the void and say hi.

So… hello everyone!

[ButterflyPrincess1]

Hello,

You'll find that this page can be pretty quiet, due to the nature and impact of ME/CFS (we're all either directly or indirectly affected by it and nobody here is medically qualified- we can only speak from our own experience).

ME/CFS (as I'm sure you'll know) is a diagnosis which should only be given when all of the other possible causes of your symptoms have been ruled out.

I'm sure you'll have had lots of tests (mainly blood tests) and are probably fed up with hearing the words 'normal', 'negative' or 'within range' (because how can that be, when you feel so rotten?!)

Sadly, there are no proven treatments (though pacing can be helpful- easy to understand but very difficult to master) and, in my experience, once you've been given the diagnosis, you're pretty much told to go away and learn to live with it.

I'm not trying to scare you, by any means, so apologies if I've come across that way.

Feel free to ask any questions you might have (I'm happy to try and help) or have a good rant, if need be

[WytchHazel74 in reply to ButterflyPrincess1]

Thank you, I feel like I’ve been abandoned by my gp anyway, so it’s reassuring in a way that what I’m going through physically is pretty standard.

[Fificakes2]

It's really difficult not having a diagnosis, because you feel like an imposter, but you're still having serious symptoms that affect your life. So you've got empathy and not a fraud, it sounds a horrible 8 months for you. I got Covid at Christmas and I'm suffering quite badly with fatigue and muscle pain.

I hope you get the help that you need.

[WytchHazel74 in reply to Fificakes2]

Thank you, I hope you’re feeling better now.

[stravinsky1]

Hi, butterfly princess, it took 5 years before I was actually diagnosed with CFS which was made when I was referred by a consultant who was treating for something completely unrelated to CFS.I know you haven't got the energy to keep pushing for a diagnosis but chase the GP and contact your local CFS service direct, it won't get you any further up the waiting list but at least you'll know if GP has put referral through. It will come under Mental Health Services not because it's all in your head but because they have therapists that can work with you and help you. My therapist is absolutely amazing.

You may have a local CFS support group in your area, so ask about that.

Pacing is one of the biggest things you can do to help yourself, along with letting those people near to you know how you are impacted by this condition and accept their help. Not an easy thing to do I know but it does help.

Ask at your local library for books as they will certainly have some.

Good luck and please do contact me if you want to. I am not a professional so can only tell you about my own experience

Paci

[strongmouse]

Hello, I don't often come onto this page, but I have ME and can remember how difficult it is when you don't know what is wrong with you. Many GPs have limited knowledge about ME. The wide range of symptoms can be hard to deal with and understand.

There are some good charities around and various information on the web. I find the ME Assocation very helpful. Although there is no specific treatment there are ways of helping to manage better.

meassociation.org.uk/#

They have a helpline and you can speak to them even if you haven't had an official diagnosis.

Pacing helps you to not overdo things which can increase pain, cognitive difficulties and level of energy available etc. It takes time to learn how to live with this illness. I hope that the people you see at the ME / CFS clinic are helpful and knowledgeable. All the best. x

[WytchHazel74 in reply to strongmouse]

Thank you, I appreciate that and will look up the ME Association.

[MayGodBlessYou]

my GP had written 'post viral fatigue' on one of my lab requests, though not a diagnosis

also she referred me to a rheumatologist who diagnosed fibromyalgia, i think

[WytchHazel74 in reply to MayGodBlessYou]

It’s all annoyingly vague, isn’t it? All my GP said initially was it sounded like a fibro-like condition.

[Fleur29]

My Dr has been very sympathetic about all my issues and pretty upfront about not knowing what to do next. I was diagnosed with CFS in Feb 2022 and referred to rheumatologist in April of this year. Still on the wait list 🙄