I appreciate that most sufferers have moved over to Reddit, but I still find that this remains the best place to tell your story and provide the paper trail of what has happened to you.
Since my last update, things have continued to decline.
I’ve had further dental problems as my teeth and gums continue to deteriorate. My teeth are either yellow or grey, smaller, with crevices appearing throughout them, and there is very little enamel remaining. I’ve had more fillings and root canal treatment, with roots and nerves exposed across my mouth.
My colon remains inflamed, permeable and distended. When I am able to pass stool, it is often white or green and ribbon-like. I have constant pain on the left side, and my rectal wall remains prolapsed.
I have continued to lose muscle, collagen, lipids, soft tissue and bone mass. The loose skin is even more apparent its up there with the worst of the ehler danlos crowd. When I eat or go to the toilet, the changes to my face can become particularly noticeable — crevices deepen and the skin creases and collapses. I continue to wake to new damage beneath the increasingly paper-like skin.
The inflammation is now extremely severe and widespread. Bone and joint pain, along with other related problems, are particularly bad after eating and during peristalsis. I can no longer lift my arms or put a sock on. I have to rock myself to try to get out of bed, pushing through the pain. I drop onto the toilet and then sit there for a long time, hoping that some of the waste will come out. My urine remains very dark and foamy.
Tocilizumab appears to have lost much of its effect in dampening the inflammation. At times I cannot even gently touch some of the affected areas because of the pain. My rear ribs, upper and lower spine and shoulder blades are particularly painful. My legs and calves are tight and sore too. I sometimes need to be lifted out of a chair and cannot put any weight on my right foot.
The allergies remain extremely troubling. I react to almost everything — not just food, but household products, scents and even fumes from the cooker. It increasingly feels as though nothing is safe.
Neurologically, I continue to experience the full range of symptoms: constant fight-or-flight, dread, nervousness, irritability, insomnia and anhedonia. I wake from nightmares almost every night, with the onset of physical pain tremors sweats arythmia and pins and needles.
During the day I navigate the world trying to avoid danger, such as knocking into something, while shuffling around unable to do anything requiring much strength or dexterity. I have to rely heavily on my eyes to look around because my neck has become so stiff, painful and rigid, with significant shoulder weakness. More recently I have experienced severe back and rib pain that left me pinned to the bed, unable even to turn over. I have developed a heavily noduled trigger finger which is a sign of chronic inflammation and estrogen issues.
I’ve also developed further haemangiomas on my liver. One has been described as giant in size, and I have been told that a very substantial proportion of the liver surface is now affected. My gallbladder wall has also been confirmed as thinning, and I have pancreatic insufficiency. What is visible externally feels like a reflection of what is happening internally.
I saw the rheumatology professor in May. I could tell he was shocked by my appearance, particularly seeing the psoriasis covering my legs and the dermatitis on my face. I had low expectations, but he suggested pushing for Anakinra, something I had asked about several times previously. It blocks IL-1, a pathway that has been reported as elevated in some people with PFS.
He convinced the medical board to give me a trial. Following the first injection, I experienced an acute reaction which felt very typical of the responses I have experienced with PFS and which may have further worsened my already dire state. I won’t go into all the detail here. Paradoxically, though, it did appear to reduce some of the inflammation, giving me a brief window into what that might feel like. I remain grateful for the professor’s efforts to obtain the treatment and give me the opportunity to try it but I cannot risk trying another dose.
My sister came over from South Africa. She was in tears when she saw the state I was in. I was so pleased that I got to see her once more. She showed me the love, compassion, validation and genuine interest that I so rarely receive.
I haven’t covered half of what is happening to me; some of it is documented in previous posts. I just wanted to provide an overdue update.
I don’t know where I go from here. I simply enter another day in the hope that it will be the one where God intervenes. He will choose the how and the when.
Despite the extreme suffering, I continue to thank him for the blessings I still receive. Seeing my sister was one such example.
Matthew 5:3
“You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule. You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you.”
We are all close to God even though it might feel like the opposite.
Best wishes to you all
Laz
A pharma developed disease that holds you hostage and tortures around the clock progressively attacking and destroying the body both inside and out. With no recognition or help. Many believe the spun narrative to deflect and victim blame making this one of the most shameful scandals of modern times.
