I rarely post a message but feel part of the community here, I have learnt lots and understand so much more than I did 6 years ago, that is due to all you wonderful people living with this difficult disease sharing yourselves - thank you
I am so frustrated right now, I have been seeing a rheumy consult in Salisbury for over 5 years, yesterday she said she doesn’t need to see me for a year.
I have no diagnosis yet and she has said I have symptoms that point to many things but no concrete evidence to lead her down a particular route.
So I am on hydroxy amitriptyline hyloforte eye drops salivix pastilles biotine mouthwash paracetamol vit d,c,and iron, omeprazole and tegretol (as needed)
I have trigeminal neuralgia on and off, teeth are crumbling and cracking and I am having to have work done often, dentist prescribed duraphat toothpaste.
I have had a scan on my parotid glands and every thing looks normal-but that doesn’t mean you do not have sjogrens symptoms said the consult, but we have no evidence from the scan but if the medication is helping that’s good just carry on using them if you feel benefits.
I have had bold tests done over and over but no concrete evidence found.
I had 2 really bad flares last year where I was in bed for 6-8 weeks each time, off work and really struggling to manage, had to go on steroids. Thank goodness for your knowledge as I was getting Blackfoot hydroxy and not zentiva which I had been having for 4 years prior - discussion with GP who said we can ask for a brand and this year has been good, this is the first time I have been off poorly from work all year.
I have a chest infection - I have had problems with a weak chest all my life. GP has me on steroids penicillin and inhalers since visit on Monday morning. Consult said yes you are very wheezy.. I dragged myself to this appointment as I live over an hour away from hospital, not sure what I expected but some thing more deffinately! I have a mouth full of ulcers and a massive one up my nose, I am sweating at night like I’m menopausal and I know that bit has long gone. I feel so let down. I have pain in my left ear but it’s not earache, I have a banging head ache at the back of my head that radiates down my neck, my left arm is numb painful and tingling all at the same time, I’m snotty wheezing sweating, my feet are burning, my eyes feel like they have sand in them, I need to drink water as my mouth is dry as the gobi dessert, my skin itches despite the oil slathered all over after my shower, I’m worn out just getting here and you want to not see me for a year, I just want to know what’s going on with my body
Consult said why do you need a label - this made me so cross - I don’t want a label I want something to help me understand what is going on with my body, so far we have had fibromyalgia polymyalgia crumbling discs in neck, trigeminal neuralgia, possible lupus possible sjogrens and connective tissue disorders, and the GP calls it limited lupus.. I have arthritis in feet knees legs hips shoulders and suffer with raynuards, I have had electro testing on hands and feet and they say there is evidence of neuropathy especially on left side. AND despite all this and god knows how many visits back and forth to Salisbury and the GP we have got no further forward.
I have also been under a dermatologist due to rashes which are now been labelled urticaria following 3 biopsys this year. At least that’s one thing sorted and easy to manage.
I am so p’d off I could cry, not sure if it’s because I’m poorly that I feel so lost and alone with this disease or just frustrated at the lack of evidence in all the test results. I just feel I’m letting my team down at work as I can’t give them a proper reason for me and my crappy body, my boss is incredibly understanding but HR would like hard evidence ie a title to stamp on my file.
To be on the meds I am on means something is wrong, to feel like I do everyday is not normal, I am so tired of it all, the daily grind, the wading up hill in Poorly fitting wellies through treacle every day all day, having to miss social events, or leaving do’s early to get decent sleep, being exhausted when you wake up, having to take all the pills, being in pain, not able to find peace or respite from it - and now I’m just left hanging again.
Sorry to moan but it’s done me good as I have it back in perspective once more - what ever IT is it’s mine to live with, i need to understand IT to be the best I can be despite this illness, so I will continue to research read and live with it and drag my sorry self into each day knowing that I will find a positive.
Thanks for the rant I feel better now🌻👍🙂
Sending warm hugs and wishes to all you lovely people kindest regards Anji x