I’d love people to read this and share any similar experiences or thoughts on my condition. It would mean a lot.
Truth is, I am lost. Still chasing a diagnosis for my worst disorder, which is debilitating. Joints and tendons mainly. But before I get there, I think I have an auto immune picture to paint.
I’m a 40 year old male. When I was a teen, I had knee problems. They’d call it “water on the knee” back then, but it was chronic inflammation. Bugged me for years and got in the way of me enjoying rugby, football and taekwondo. We’ll come back to joints shortly, but bear this in mind.
In early 2000s, I started with vitiligo on my genitals. The pigment is completely gone now. I no longer look like a cow, rather one of those bald cats!!
I’m moley. So much so, I have check-ups every six months. I had an ugly duckling - a highly dysplastic mole / melanoma in situ - removed a few years back. Now, with vitiligo in mind, I’m getting halos on many of my moles (I have hundreds of moles). Halos are appearing on various parts of my trunk.
I’m aware that halo moles and vitiligo are often linked and are both auto immune.
Next up, I have nail disease… Quite bad in my toenails. I have salmon patches on one big toenail, but most others look white and chalky underneath. One foot has every toe affected (left side) and one just the small toe (right side). The small toe on the right side is subungal hyperkeratosis and only last night, the nail came right off. The nail bed looks scaly, a mixture of white and yellow. All toes, even the four that look pretty healthy on my right foot, have horizontal white lines (Beau’s lines, I believe) and those affected mostly have longitudinal ridges. My finger nails are okay. I’ve always been told it’s fungus, but tried orals, topicals, of all kinds, and even removed nails and filed the skin clean. It always returns on my toes.
Another point to note… I had suspected MRSA on my right foot in 2018. Why suspected? Because I had an outbreak of puss filled nodules on the top of my foot that itched, got worse and would not clear up with two different courses of antibiotics and antifungals topicals. Could this have been psoriasis?
Leaving skin behind for a second, let’s talk joints and connective tissue. I have had three knee surgeries, one hip surgery and elbow surgery, all due to ligament, cartilage or bone related problems. Truth is, it was probably all just inflammation. None of the joints operated on have got better. In fact, my elbow is awful.
I have a diagnosis of polyarticular arthritis from a rheumatologist but with no known cause. Joints affected are knees (patella), hips, elbows, lower spine, AC joint and hands. I have heberden’s nodes that glow red some days.
In addition to crepitus and joint pain, my tendons snap. This is my worst symptom. Joints lock, but I know it is tendon tightness. The snap is like a loud clap, not a thud. Both elbows, both hips, even my ACL insertions into my shins crack. I has costochondritis years ago, and it flares up now an again. My heels kill me; they are bright red and I have tight Achilles tendons. The locking and snapping is severe at times. I try to keep it in, but at times I yelp, and it’s a little embarrassing. I sleep badly because of it.
Some other relevant info. I have been flaring badly for about six months, funnily enough since I had CoViD. This has been an awful time. I’ve been fatigued, depressed and in a lot of pain. I was at the hospital on Christmas day with an eye closed over due to inflammation that was affecting both eyes. It cleared up and then moved to my feet. Right now, they are glowing and I have eczema-like lesions around the edges of my feet.
My dad has psoriasis. It’s pretty much only his left elbow and left knee, but it’s there and it’s plaque type.
I seem to have everything for a psoriatic arthritis diagnosis but obvious skin psoriasis. I’ve had apparent ringworm recurring, folliculitis, but never been told any of it is psoriasis.
To add to this… I got told I had cutaneous T-cell lymphoma in 2018 after a lump appeared in my groin and other lymph nodes were enlarged. Weeks of stress and preparing for battle, only for it to clear up and me be told they were wrong. Never found out what it was (I assumed a hernia) BUT… Coinciding with my flare in the last six months, I developed a tumour on my right proximal ulna with associated axilla discomfort (left elbow, left armpit). The tumour looks like lipoma on ultrasound but it appeared quickly and it hurts. It radiates pain. There’s a synovial lump below it on my olecranon. Doctors don’t seem worried. My armpit continues to rage and hurts, plus it sweats and smells now and again. For info, I don’t sweat much and never smell, and suddenly the armpit on the side of the lipoma starts to sweat and smell? Scans looked normal. Chest looks normal.
I’m so lost. I’m flattened and consumed by this. Maybe I have two issues. Maybe the mass and armpit is one, and it’s triggering a flare of an undiagnosed auto immune condition that debilitating my connective tissue.
I just feel that there is no appetite to push for a diagnosis. Nobody wants to seem me through - just point fixes for acute problems. I never let illness get me down and never take time off work. I’m not the type that wants to be ill. However, I fear doctors think this is either all in my mind or nothing of concern, yet my body is telling my that it’s under attack. I feel under attack.
Somewhat of a shameless cry for help, I know. Grateful of anyone to talk to. Not expecting a diagnosis on a forum, but I kindly ask for your support.
Thanks
Chris