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This post is not medical advice. Trigger warning medical neglect and misogyny.
Before I begin many people confuse palliative care with hospice. Though they are similar services palliative care does not mean the patient is actively dying or will die soon. It is for patients with complex chronic illnesses that need extra care/support. It is also one of the only avenues left for patients, especially female, to get their pain treated. My doctor who has been practicing medicine longer than I've been alive did not know what palliative care actually was. Most doctors don't even though they work with these care providers on the hospice side. wtf?
I had an appt with my PCP last week about setting me up for palliative care. This is something I should have been offered years ago but with the new psoriatic arthritis diagnosis on top of everything else it's a more simpler transition. My primary illnesses are still highly stigmatized doctors do not know of their existence or worse thing they are psychosomatic, when they are in fact organic.. but I digress.
Oh an by the way it's hard to tell but it took probably 20+ years for the psoriatic arthritis diagnosis. It likely started while I was in high school. It was ignored the entire time. I have the classic female presentation of the disease. It wasn't until after reconstructive surgery , and 2 years after that I was diagnosed and I had to push for that despite all the evidence. I am at the severe stage. Yet another way medical misogyny has caused me permanent disability. I still don't have my medication to stop/slow the damage because of the health insurance scam in the US
That conversation with my PCP went well. I also brought up something to him. Something I have data to back up. My severe ankle issues started at about the same time my POTS got worse to the point I have been 95% bedbound for years. It is relevant because...
Untreated pain in healthy people can mess with vitals causing dangerous tachycardia and blood pressure spikes due to adrenaline hormones surging with the fight or flight response and...other stuff. I have all subtypes of POTS including hyperadernergic meaning my body stays in fight or flight 24/7 no break. No wonder my insomnia is so bad.
Hyper POTS often includes(about 1/4 of patients) orthostatic hypertension which I also have. I think my untreated severe pain has been contributing to my POTS being in a constant flare for over 6 years now. That's when I went from being able to be upright sitting for several hours to not being able to even sit up for more than a few minutes without a syncope incident (fainting or almost fainting).
Coincidence? Highly unlikely. I have been in severe untreated pain for decades but when my connective tissues really started tearing and my bones warping from undiagnosed and untreated autoimmunity it was the last straw. Had my pain been treated I probably would not have been bedbound this whole time. Though on the flipside it's me being bedbound that saved me from full on ruptures, but I am close to that point now regardless.
I have data to back this up but this post is already long enough. I can get into that in a future post if anyone is interested.
My PCP agrees 100% with my hypothesis that my severe pain being untreated is directly making my POTS /dysautonomia worse and like I said I have data backing this up.
For now...I have a NP coming from in home palliative care tomorrow for intake. I am hopeful that they will treat my pain. I can't go to pain management because they do not abide by the ADA and offer accommodations and like I said I can't sit upright for more than a few minutes without syncope . The meds for the dysautonomia I am on buy me about 10-15 minutes at best.
I don't know how this will go. I have little faith in doctors due to decades of dismissal and abuse which has caused multiple permanent losses of function in me.
I consider my PCP to be one of the good ones but even his office has been awful to me at times. He does have new support staff who are better. One thing that is bothering me...my husband goes to the same practice. The NP that works at the office is his primary care and she was mine(my dr is the owner of the business ). She prescribed him the max dose of opioid medication for years. She refused even a small amount for me. This was after x rays showed bone damage, me sed rate through the roof and i needed an MRI.
My pain is still not treated. If I were a man I wouldn't have suffered all these years without my pain treated. This is a fact. Multiple studies confirm this.I have also seen it too many times in my own life. Watching my husband get care from the same drs who dismiss me simply because I am female time after time. Medical misogyny kills, harms and disables women by the millions every year.
Oh and if you are wondering I have no loss of muscle or deconditioning after being bedridden for years. It's complicated but science explains this as my ME/CFS subtype "protects" against that. But that is a comolicated thing to explain. Science backs this up too.No one can tell I am bedbound except I have no callouses on my feet.
