Hi Everyone. I’m hoping you might be help able to help with some advice.
In 2016, I started developing morning stiffness in my hand and legs and pain in my feet for about 30 minutes or so but also had thoracic spine pain that radiated along my ribs during certain activities like preparing food, ironing clothes and walking and also intermittent knee pain.
On my Mam’s side of the family there is a strong history of psoriasis, rheumatoid arthritis, Crohns and psoriatic arthritis and my Mam has psoriatic arthritis and ankylosing spondylitis.
I have also suffered with psoriasis throughout my life (covered from head to toe) but have only had scalp psoriasis since 2014, after I had a tonsillectomy for repeated infections of strep throat since childhood.
I went to my family doctor and given my family history he referred me to a rheumatologist. She gave me the once over and said there was nothing wrong with me and I should loose some weight (I was a little overweight but not obese) I asked what I should do about my ongoing pains and was told to see a physio.
I lost nearly 50lb and went to see a physio, I did the exercises they advised and my foot pain (plantar fasciitis) resolved but still had morning stiffness and the pain in my back and knee never left.
For the next two years or so I had become very active, going to the gym regularly but I always needed pain relief to get by day to day. In May 2019, I began to feel weakness in my arms and legs and felt that I didn’t really have the strength to work out like I had been, this progressively got worse over the summer and in September i returned to my doctor with morning stiffness, foot pain (Achilles pain) first thing in the morning and after rest, my fingers would become stiff and painful and feel like they were literally freezing and turn purple over the knuckles when I was out in cold weather and I also had constant pain in my elbow and knee and an overwhelming feeling of weakness in my limbs, my legs would feel like they would buckle from under me by just walking up two or three steps on the stairs, I also had developed a sciatic type pain radiating down both buttocks.
He sent me for xrays which revealed nothing and then an mri of my lumbosacral spine which showed a slipped disc at L5S1. He gave me a course of ibuprofen and codeine and I needed 3 weeks off work to recover. I explained to him that I didn’t feel my other symptoms were related to my slipped disc and asked for another referral to see a rheumatologist. He was reluctant as the previous one said there was nothing wrong with me but I insisted and he gave me one.
I returned to work but it wasn’t until December that I felt my strength was back to what it had been, again still requiring pain relief to get by day to day but the weakness has resolved, just had pain and morning stiffness.
I went to see the rheumatologist in January, explained all my symptoms, they ordered a bone scan and an ultrasound of my achelles and had a follow up appointment for this June. Around February, I started developing foot pain (like my lace were too tight) and hip pain when I was walking (in the groin and on the outer part near the buttock) which continued for a few months until May, when my other pains began to get worse again, elbow and knee pain was almost constant like a consistent gnawing pain, pain in my hands (my hand would cramp easily and quickly using a spoon or writing), my neck felt strained like it wasn’t strong enough to hold the weight of my head, I’d wake early in the morning and be in pain around my hips and lower back just turning in bed. After one night, where no matter what position I lay in I was in pain and couldn’t sleep, I rang my doctor the next day crying with the pain and they prescribed me ibuprofen and tramadol. I took these and it was almost like instant relief, I took another week off work and they advised to wait to see what the rheumatologist said as my appointment was coming up.
At the start of June, I had a phone consultation (outpatients were cancelled due to COVID) with a registrar and explained all my worsening symptoms, I explained that I think I also had dactylitis in one of my toes. She told me that my ultrasound and bone scan were normal but she would speak to the consultant and get back to me. That was three weeks ago and I still haven’t heard anything. The Saturday after I spoke with her I woke up with pain in my cervical spine that radiated down into my right shoulder, I couldn’t turn my head in any direction without it shooting pains in my neck and shoulder. Again rang my doctor and again more pain killers and another week off work.
As it turns out I’m a nurse and I work in the same hospital where I attend the rheumatologist, when I returned to work I checked my file to see what she had written. Her note detailed some of what I told her but her impression was : sounds mechanical, for physio therapy and to follow up in 1 year. I also looked at my bone scan which said it was negative but it appears that there is increased uptake of the tracer in my hand and feet but I can’t tell for sure.
Can anyone suggest where I can go from here? I feel like I’m banging my head against a brick wall. It feels like that because I have a slipped disc that they are ignoring everything else. Everything I read points me to psoriatic arthritis, I looked at the risk factors for PsA and in one article on healthline.com of the 5 risk factors, l have 4. I have almost the exact same symptoms as my Mam. Everything I read talks about the importance of treating PsA early to avoid irreversible damage but I’m afraid now that I’m going to be left with untreatable joint damage and pain. I don’t know what to do. Any advice would be greatly appreciated!