Enthesitis and PsA and the Strength to Carry On

I personally think that I have enthesitis after suffering from psoriasis since 1982 and PsA since 1985. Since the advent of the internet, I have researched the WEB and came to the conclusion in 2017 when I first heard about enthesitis, that this is the illness that has plagued me for years.

I have scalp psoriasis and the back of my head down to the neck is always red and looks inflamed. I have suffered from chronic neck and shoulder pain and stiffness for years and I think it’s linked to the psoriasis. I have had inverse psoriasis since 1982. My anus, coccyx, scrotum, and penis are inflamed. From the coccyx down is very sore and inflamed and bleeds on occasion. I also believe this is the reason for my lower back pain hip and sacroiliac join pain.

Looking for a diagnosis

In 2018, I was in a rheumatologist clinic and had a full skeleton scan which revealed no swollen joints. I told them what I thought and explained my symptoms in full. Over the years I have had quite a few blood tests and they always come back negative for any inflammation which is quite common for PsA sufferers. The head doctor told me that no swollen joint and negative bloods mean no arthritis. So, my uveitis, rotten fingernails, and psoriasis plus PsA were dismissed by a reputable clinic.

Since then I have had three MRI scans, the latest this week, and still without a diagnosis for the pain that I am in. I can hardly walk because of the hip and knee pain and I also have pain under my left foot. What does it take to get a doctor to believe that enthesitis exists?

I am at the end of my tether I have 39 years of experience of this damn illness and doctors still do not take any notice of the pain that I am experiencing. It’s beyond belief.

The importance of family support

I am now 58 years old, married for 35 years in March of this year. We have four terrific sons all grown up now, one grandchild she is a bundle of joy, Ciara Joy Jones. Even though PsA has plagued me for most of my life, I always carried on and have managed to work until our last son Regan finished university in 2018. Since then, it’s been a real struggle, but my wife and children are my reason for living. But working is now another matter. I am a long-distance heavy goods driver and don’t know how I really managed to keep it up for so many years. I always said to myself it must be done, but now things have changed drastically and working is now not an option for me.

It pains me to say this, but PsA has finally got the better of me and I thank my lucky stars that I have my family. I wish you all well and I hope that you are all coping with this relentless illness.
Take care and try to stay strong.

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