struggling: hi guys not been on in a while. I... - PBC Foundation

PBC Foundation

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hi guys not been on in a while. I have been feeling not so great last while.

My Lfts have been really high lately. My muscles in my legs and face are unbearable at times. I cannot yawn properly, in agony when I eat, struggle to get my legs motivated some days.

I saw surgeon regarding my face, and he asked if I was depressed through this nd I I felt suicidal????? in front of my children....

I think it stinks that I cannot get op on my face on the NHS, even although I am in agony. Yet it is wrong that if I said my lack of bust was making me depressed, I would get that done!!!!!!!! I now face the prospect of a huge bill to go down private route!!!

I am struggling to come to terms with it all.


4 Replies

Sorry to hear you are in such a mess and the NHS are being there normal unhelpful self. Can you push, exagerate anything to try and get what you need. Soemtimes I think we are too nice and we should burst into tear and be pushy!! Good luck :)

thank you Lisacj, well I went to GP on Friday, and told her exactly what I felt. It's bad enough having this disease some days.

My joints ache, and lack energy but I keep going, but it's hard some days.

My Lfts have been really high lately, last two times exceptionally, yet my consultant says disease not getting any worse...

just a bit fed up right now..... and it's not going to get any better :(((

Hi Posh you sound miserable if your pain is not being controlled by pain killers then ask dr to refer you to a pain clinic many hospitals have these now. I cannot imagine what the face pain must be like prob to do with trapped nerves maybe thankfully I don't suffer with that type of pain have some muscle pain but find that once I move more it actually helps so feel with me its case of muscle weakness causing the pain as its very bad first thing in am but once am up and about it passes. Hope you get sorted soon pain can bring you down big time.

posh in reply to littlemo

it's the muscles in my face have wasted away. the pteragoid muscles..... It is excruciating. I can't function properly. They keep plying me with drugs and they do nothing!!!!! I I can get op to put metal pin in but they won't do as too expensive.

yet if I needed a tummy tuck or book job, then no problem.

I am so struggling just now :(((

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