My Living Hell.

Posted Wed 17 Jun 2020 4.48pm by Dani (edited Wed 17 Jun 2020 5.13pm by Dani )

Hi,

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.

Posted Thu 18 Jun 2020 1.07pm by Clairebear

I’m new to this forum too.

I developed and was diagnosed with Psoriasis at 23 (45 now) and started with severe fatigue and joint pains/weakness at about 26 eventually being diagnosed with Fibromyalgia by the rheumatologist at 33 after years of struggling with ‘flare ups’. The last 12 months has seen me get significantly worse to the point where I can barely walk except to shuffle on bad days and my work have had to move me to a downstairs office as I can’t manage the stairs. Been in a flare since end of April now and had to come off work. I have had x4 telephone consultations with my GP, as can’t see any1 whilst this bloody coronavirus is rife, I have been in tears begging for help as been in so much pain only to be prescribed more codeine and told you can get like that with Fibromyalgia even tho I said Fibro is not meant to be progressive or get worse!

After ringing 111 at 4am this morning (in tears) they advise me to ring back my GP and push for investigation as agreed something didn’t sound right. My GP has agreed to refer me back to rheumatology but warned because of coronavirus was unsure how long I’d have to wait 😩

I came across this site and advice on PSA by accident and convinced that’s what it could be and can’t understand why I haven’t been checked before now as I have psoriasis you think that would have been the first thing they checked? I rang my GP back and was told by bloods had been checked for arthritis and have no markers but have since read (even on NHS website) that you don’t get arthritis markers but the rheumatologist checks history, MRI,s and scans to diagnose?

Sounds like you should also be referred to Rheumatology for testing. I really feel for you as it really affects your mental health as well as physical. My partner, family and my boss are all brilliant but I’m sick of hearing myself moan about my pain never mind them having to hear it so have started to just cry to myself and shut down 😢 So I’m definitely here as another sufferer if you need some1 to talk to.

Claire x

Posted Thu 18 Jun 2020 2.27pm by Dani

Hi Claire,

I am so sorry to hear that you're suffering, I can relate to you so much.

You won't have any markers because there are not any specific tests that show psoriatic arthritis, they would have checked for rheumatoid like they did with me, mine also had no markers. So I'm just on the long road of having tests and changing doctors etc. Etc.

My mental health is also like yours and I cry an awful lot, I too struggle to walk so I use a wheelchair to go a walk every now and then with my husband and the kids.

I don't know about you but the fatigue really gets to me. The pain is horrendous and is in every joint on my body but i feel I could be alot braver with the pain if all of my energy wasn't completely taken away from me.

I've tried everything to feel better but so far to no avail. Heat is nice and soothing, like hot water bottles, a hotub or my heated seats in my car and apart from that I take tramadol and cocodamol, I don't like the tramadol very much though.

It's pretty much ruined my life but I manage to be brave about it all until another massive flare up comes then I struggle not only physically but the impact on my mental health is astronomical. I too came across this forum on accident.

I am always here to talk to you Claire, I think it could help us tremendously xx

Take care, Dani xx

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