I'm Dani and i'm new to this forum. I've been looking for something like this for some time now. Somewhere i can share my experiences and maybe get some advice.
I was diagnosed with psoriasis aged 14, my legs were covered in big, angry, red, raised patches which were also scaly and would flake. It never caused me much embarrassment, i'm a very open person and not much would bother me in that aspect. So i used my ointment i was prescribed and just got on with it.
At age 17 my back problems started, i would be in a lot of pain and my mom would rub my back and try to alleviate the pain. Still, i carried on as though nothing was wrong and didn't go to see my GP, i overlooked everything and tried to push on by simply ignoring any pains or symptoms i had. In the years following different things started to happen, i would walk up the street and my toes would stiffen and would feel as though they were on fire, my back continued and i became very tired. I had been very active my whole life, even if i wasn't walking, running or cycling i would be obsessed with cleaning my home and having everything in order at all times whilst caring for my two young sons and my husband. I had also worked four different jobs between the years of me being 15 up to 23/24. I felt i could handle it all then.
Then January 2019 came and that's when my life completely changed. I remember one particular morning shouting out in pain, crying so hard that everything hurt more and i was begging my husband not to ring his mother to come and help us because although all the previous years i had never felt embarrassed, suddenly i was ashamed, embarrassed and depressed. I didn't want anybody to know what i was going through at all, stupid i know but its just how i felt. I did finally see my GP, i knew i had let everything go on far too long and i was in so much pain, extremely fatigued and quite frankly finding it near impossible to look after my children and our home, the dog and my husband.
So my Gp was looking into referring me to a Rheumatologist because straight away he suspected some type arthritis, however, with being so poorly constantly i would miss my appointments, most days i couldn't get out of bed never mind driving up to the doctors.
That particular GP i was dealing with left the surgery and i was then passed from pillar to post and got absolutely nowhere.
January 2020 - twelve months passed again, but i had finally got to see a consultant who sent me for an MRI of my spine. She also prescribed me Naproxen and medication to help me sleep. The mri came back clear on my spine which is brilliant news of course but then i felt like i was on a mission to convince the doctors that i do in fact have some serious issues and i need help. I have now been referred to physiotherapy and take strong painkillers but everything else has came to a stop because of the corona-virus.
I had never heard of psoriatic arthritis before until my mom was diagnosed, shortly after my youngest sister came down extremely poorly and has been diagnosed too. We all have exactly the same symptoms, experiences and pain and we all have psoriasis but i just feel like i'm on a super long road to try to get diagnosed, i am so, so desperate for the diagnoses simply because i want help. Throughout this journey my children have lost their old mom and my husband has lost his old wife, i now use a wheelchair at the age of 28. i have lost friendships and even some family members have 'forgotten' about me. Some days i cant even brush my teeth or hair, i cant wash myself on the bad days or even climb out of bed, i can't pick my phone up with my bad hands or make my children their breakfast or cook a wonderful family dinner. Life has changed dramatically and its took its toll on my emotional well being, so much so that i have wished to die, i feel a burden on my family and i don't enjoy life anymore, don't get me wrong some days i can feel ok, OK being all that it ever is but it only ever lasts a few hours and me having a wash can put me back in bed.
So i have came on here to find other people to talk to, knowing we all suffer the same offers some sort of comfort and i would love to make others try to feel better too.
Thanks for reading, Dani x.