Hand hold please !!!

[Teagoanngoanngoann]

Sorry but want to moan !!!
Have a stupid illness. Un-named neurological due to not enough stuff showing up on tests.

Always starts the same..swollen glands in throat or under arms then gradually feel like i have the flu which turns into horrible chronic fatigue. Unable to get out of bed and sleep for excessive periods. Have pain in joints and muscles. Problems with balance and muscle control particularly in my eyes causing vision problems and a tremor. Also triggers thrush when it starts. (Nice)
I manage it by limiting what i do. Have stopped working and rest regularly etc. But at weekend i went out for a special occasion...it was wonderful and i had a ball and i dont regret it... but now im floored with every symptom and feeling sorry for myself and wishing i was like my friends and did not have whatever this is. Sorry for moaning !!!

You poor thing! Have you considered it might be giant cell arteritis...? It’s a type of vasculitis. The joint pain and fatigue would make me think it’s not something strictly neuro...have you seen an immunologist/rheumatologist as part of your investigations?

@LittleRedSocks no i havent. Ive only seen a neuro. Its been slowly creeping up for 16 years but we cant really seem to get to the bottom of it. If i deviate from my allocated amount of energy at all so to speak im floored for days. Its frustrating. I will mention that to my gp as im trying to avoid Dr Google haha. Thanks

Definitely do - vasculitis is still relatively rare and not something doctors think of straight off the bat as the symptoms can be so varied and mimic other things (I’m a vasculitis patient since 2005 which is why something struck me in your post!). I really hope you get answers either way xxx

Thankyou. Hope u keep well also