Well this is just an update on my health:-
1: The Infectious Disease clinic said late last year that they doubt my symptoms are from Ross River Virus (so they wanted some other blood tests done).
2: The rheumatologist said he doubts its Ross River, which hasn’t been in Adelaide for decades, (he’d know he’s been around for about 10 decades) he said he’d once sent of some tests himself for a patient and they came back as positive for RRV but then the lab called him to say it was a false positive and his patient had parvo virus.
Both of these specialists telling me it wasn’t RRV, even though I’ve had 3 tests all come back positive, and I have many symptoms of RRV – I really was left confused.
My GP ran some tests for Lupus and Rheumatoid Arthritis recently and both are negative.
I’ve had very stiff fingers lately and one in particular has been super swollen where I couldn’t even move or bend it, and the pain was unbearable, I couldn’t even drive over the new year, it left me crippled and useless. After a course of prednisilone it was much better though the main finger affected still hasn’t returned to normal its sore and tender 24/7 and not as flexible as it was, this is called Dactylitis – Sausage Finger. Plus all the bones in my toes and top of foot feel broken upon waking and walking each morning, and other ailments that I won’t bore you with as I’ve mentioned them before.
So the update is …
From the Infectious Disease Clinic – my blood tests were sent to West Mead Hospital in Sydney, whilst still testing positive for RRV which they still believe is a false positive result, but I have tested positive to Parvo Virus B19.
Please note this is not the same Parvo that dogs get!!!!!! Yes okay I’m a bitch sometimes.. but its still not the same virus.
So the symptoms of lets just call it B19, if you super lucky are gone within a month or so, but 20 percent of affected women have persistent or recurring arthropathy for months and years.
It mimics Rheumatoid Arthritis, the pain is real for as long as it lasts, but it doesn’t inflict the same harm that RA does on a body.
It causes pain, stiffness, swelling, and disability in multiple joints.
And the main affected joints with B19 are hello hello what I do suffer continual pain and or stiffness in, the wrists, hands, feet and knees.
It is not a virus that your normal GP would even screen for, its just not even a thought, the specialist tells me that the GP would have, B19 not even being a thought the back of their GP brain, so I guess that is why specialists get paid the big bucks!
It affects more women than men, and can be fatal to unborn babies during pregnancy, so lucky that’s not a problem! It can though cause serious complications, such as chronic arthritis, myocarditis, and meningitis, or triggering the onset of autoimmune diseases. They aren’t sure if the auto – immune conditions are triggered by parvo, or if parvo is the first sign of an already initiated auto-immune condition.
One thing at a time please body!
There is also hardly any info on it on the internet, but the specialist did say don’t google it or I won’t sleep at night for worrying. LOL as if I’m not going to google it!
He said literally that well if “suck eggs” is a used expression these days that is what he would be telling me, but in a nice way. I take this as similar to “toughen up princess” “cowboy up” etc.. he said don’t be thinking one day you’ll wake up and feel better, he said don’t go there with that thought process, just continue doing some graded exercise when you can, rest when you can, lead a healthy life, and the rheumatologist will be the best person for me to continue to see. I have that follow up appointment in a month and that would be the specialist to best help me manage it.
So what is Graded exercise? Graded exercise therapy (GET) is physical activity that starts very slowly and gradually increases over time.
So I will do what I do already, go to gym when I’m up to it and do nothing when I’m not!
Also he suggests I see yes you guessed it another specialist, for some Cognitive Behavioral Therapy (CBT) “thanks google for this description”.
CBT helps patients to address patterns of thinking and behaviour. There is a focus on goal setting development and planning with much emphasis on an accurate understanding of pain and its relationship between physiology eg) pain and muscle tension, thoughts, emotions and behaviors. Lifestyle changes and strategies are encouraged to improve sleep patterns and to develop better coping skills for pain and other stressors using various techniques eg) paced activities and relaxation.
So what next.. my appointment at the rheumatologist in April, and just try and be kind to myself I think, and do yoga more.
So this post is a Parvo Virus (Woof Woof) Sausage Finger (Dogs do like sausages) B19 – code word post. hahaha. Gotta laugh or I’ll cry!