Feel so helpless and alone

[Buffyann]

I have ehlers danlos syndrome, which has caused a condition called cranio cervical instability. I found out a year ago I have the cci and still haven't got anywhere in terms of support and treatment. It is where the ligaments in your neck are too lax, so your neck joints partially dislocate when moving your head. My skull is putting pressure on my brain stem when I extend my head backwards.
I am in constant pain, which is bad enough, but I can't cope with the nervous system symptoms. I feel like I can't breathe and eating triggers horrible reactions.
I am 28 years old and rely on my mum for most things. I really want my own family and a job I enjoy, but don't see that happening now. All my time is spent at hospital appointment or chasing up hospital appointments. I don't enjoy anything anymore and my whole day is a struggle. I feel sick constantly and exhausted.
My family have already spent so much on private healthcare for me. My only option to stop deteriorating and not die/end up paralyzed is to have my skull and neck fused, metal rods and screws put in. It is a massive op and I'd never be able to move my head again after, not to mention it costs 60 thousand pounds in Barcelona as they don't do it in the UK.
Most of my friends and half of my family don't really talk to me anymore. I feel so alone and can't understand how the nhs can just leave me to suffer without any help.
I'm considering doing my bucket list and going to dignitas. I don't want to die but I can't keep on suffering like this. I look fine so people don't understand how I can be so ill.
I don't know what I'm wanting to gain from posting. Maybe someone has some advice or knows someone going through something similar

That sounds a heck of a lot to be dealing with. I have EDS but am not as severely affected as you are. Do you mind me asking which hospital you are treated at? I can really recommend the National Orthopaedic Hospital at Stanmore if you’ve not been seen there. They are one of the few hospitals that specialise in EDS and might be able to help you manage this. My GP referred me there even though I’m at the other end of the UK. I’m so sorry you feel so alone. It is extra hard when you look relatively ok but are in such horrible pain. I often think some people reckon I’m making my symptoms up. Please don’t give up on getting more help here. And you aren’t alone. There are others of us out there with dislocations and exhaustion and the 101 other things that EDS can cause.

Thank you for replying. Eds is an awful condition to have. I saw a neurosurgeon at Stanmore who said he didn't agree with operating and can't offer any help with my neck basically.
I'm due to see Dr Mittal for my eds next month as I'm still not under a specialist, but it won't be for my cranio cervical instability.
I am part of an ehlers danlos and cci Facebook group, so I know there are lots of people suffering, but nobody who I know personally has it. They don't seem to grasp how serious my condition is.

Buffyann my DD is one of Dr Mittals patients and it was her who diagnosed me too. They are anti pinning things I agree but I’ve no idea if they are right or wrong. My local hospital are all for pinning my shoulder but I know Stanmore are against it for EDS patients in the main. It’s very confusing and upsetting when you get such contrary views.

I agree there’s very little understanding of EDS amongst those who don’t have it (ie most people) and when anyone has heard of it they just think it means you are hypermobile and that’s it. It can be very isolating when you don’t know anyone with it In real life and friends, family and co-workers suspect it’s all in your mind.

If surgery isn’t seen as a good option for you does the neurologist have any other suggestions as how to manage the cci? It’s one thing to say surgery isn’t the best option but another to not offer any way to manage your symptoms or try to prevent it worsening. Dr Mittal seems very helpful so I’d tell her how your neck problems are impacting you and you feel desperate and that life is becoming unbearable due to the symptoms it’s causing. Don’t be afraid to tell it like it is right down to what you said upthread about Dignitas. I really feel for you and how low it is making you feel.