u/Queasy_Owl6241

Sorry this TLDR is not great I have bolded the main points - brain struggling to shorten as I’m a bit ranty

- late 2025 GP suggested FND, was later ruled out by a consultant

- since Jan I have learned you don’t grow out of CFS and that I probably never got fully better, but was also never formally diagnosed. 2 GPs have met with me and can see why I think MECFS, now waiting to see neurology.

- Last night attended a&e with one sided facial weakness. Assumed I might have Bell’s palsy but they needed to rule out a stroke.

- On shift DR made suggestion of FND again (even though he admitted is not neurology specialist, couldn’t even rule out stroke without speaking to neurology and is still sending me for emergency MRI)

- Tried to explain why I don’t think is FND, a bit about MECFS, but also I was pretty exhausted and overstimulated and struggling to get words out and was in room by myself. Also that I didn’t even think this was a stroke assumed it was Bell’s palsy lmao and that I wasn’t too worried but was instructed to come in rather as wait for GP to be open

- How can I feel more confident and equipped to shut this down if it happens again and also I guess feel better about getting help when I need it

- Because of so many times being fobbed off I avoid health care at all costs even when people around me are urging me to go lmao, is there like a little info card I can give professionals about my symptoms or something, I feel like I need some kind of medical card that says hi I struggle to process information and communicate effectively please give me extra time to answer and use direct questions and here’s a run down of my health

Okay here’s my long vent for anyone who has the energy - I will not be offended if nobody reads I’m currently on steroids + my amphetamine medication and I feel riled up.

A bit of background - I (27f live in Scotland) I’ve not got a diagnosis of mecfs but was told at 18 I have cfs after I had been having post viral fatigue for 5 years (though I feel my symptoms actually started before EBV and were labelled as mental health problems)
Currently I am waiting to see neurology as my GP knows nothing about mecfs and says she doesn’t know enough to do anything so just waiting but won’t be seen until next year.

My health had gotten a bit better over the years and I was no longer bed/house bound. Though there were times I can now reflect back on and think hmm maybe those were not explicitly mental health crisis - there was mental health symptoms but I reckon they were more caused by being stuck in massive push/crash cycles that ultimately would end in a crisis that would lead to me putting my life on hold and resting until I felt better both mentally and physically, as I have always said “my mental health has such a physical effect on me” I think it’s probably the other way round hun.

Anyway I have been deteriorating a lot this past year, a lot more neurological symptoms that were new + a lot of symptoms I have had consistently over the years. I didn’t clock it could be the CFS that had been mentioned many years prior as I was never informed about what that meant. A GP back in November mentioned the possibility of FND I could see why she would flag for that over the like of MS - but I also don’t think I actually fit an FND diagnosis. I saw a consultant, he too felt I did not meet the criteria and I was left with nothing yet again. I did mention to him I had been told CFS and he referred to it as a functional disorder also (I did not know he was incorrect at the time)

I got back in touch in January essentially demanding some kind of action as my life is slipping away right in front of me and nothing is helping - at this point I was referred to neurology even tho they had ruled out FND, it was around this point I considered CFS and read up more. This was because I had attempted 10 mins of yoga 2 days in a row to resolve back pain. Following on from those 2 days I became severely ill, this past year whenever I have tried to exercise I have always become very ill and my body has ached, I kept trying tho because they tell you to move more when fatigue is one of your main problems 🙃🙃 but that’s how I found the word PEM and I was like holy moly, why did nobody teach me about this so much earlier. I do fit all of the criteria for MECFS - it makes sense that you know my baseline is not great but it’s not severe (I think I would be categorised as mild but mild-moderate in a crash) but I was having such fluctuating symptoms (which is why the consultant did not think FND) I spoke to another GP about this and he seemed to agree with me and could understand why I did not want to be labelled with FND, he did not have enough knowledge and was just on cover that day not a regular at my health centre so he passed everything on.

The event that has triggered this post
Anyway, last night I start with some facial weakness on one side, with tingly tight sensation in that side. My immediate thought is Bell’s palsy just not a severe case as it’s mainly my cheek and mouth, not my forehead. Phone 111 they say go to a&e as need to rule out a stroke. Get seen and I explain I’ve been having XYZ waiting on appt with neurology and again he brings up FND.
I say I really don’t meet the criteria for that, he says it’s a diagnosis of exclusion (not correct) I’m also feeling very overstimulated and getting exhausted with the lights and noise and have not long come out of a week long crash. And look I am a bit believer FND is real, it is not a mental health condition, I have know people who have had it and been very profoundly effected, honestly even more than what I feel I currently am. But it is such a stigmatised diagnosis, it’s very misunderstood and I just do not want that on my record unless actually a specialist assesses me and can tell me why they think I have it ( because thus far after any more in depth assessment it has been agreed I do not have that ). With my history of mental health as a teen (but none as an adult) I am still asked at nearly every appointment if I have been having thoughts of self harm or suicide. I feel like most of my stress these days comes from speaking to health professionals and feeing misunderstood and unheard. I have awful introspection and also I have adhd and I’m meant to be getting assessed for autism too - part of this is I do not process very quickly especially in overstimulating environments. And I feel like I never communicate in a way that actually makes people understand me - but I come across as articulate so nobody thinks to question me, but I think I use certain words not the same way as other people do.

I don’t know just feeling very defeated and like 🙃🙃 this is why I hate going into medical settings. I’m glad to have had the positive experiences that I have had with some doctors the past couple of years they have given me hope, I just wish they were the majority. And you know what maybe I do have FND but that is not meant to cause PEM and I don’t think POTs either and I have had these for 15 years now so … idk man. Roll on this new research that has just received funding and I hope so much that there is more helpful information for diagnostics and treatment found. This is not even the worst my function has ever been but my god it is still so defeating.

If you did read this in full thank you for giving your time and energy 🩷 any solidarity or advice is welcome

I have a very dear friend coming to visit who is living in a pretty shit situation. We have been doing a lot of work to try and help her know her worth, and find herself again but she feels very stuck.

We have already worked through things like practical safety and done all of the non-magical things, but she is still not ready to make any big changes at this time which is okay, I just want to be there and be supportive and make sure I am there for when any changes happen.

In the meantime though, I wondered if anyone had any ideas around rituals or anything we could do together to amplify feelings of feminine empowerment, courage, self-worth, emotional strength? I myself am working through some past traumas at the moment and would also benefit from similar themes! I know when I have her come and visit she wants to do a ritual together but did not have anything in mind so would like to make some suggestions. Thank you in advance!