Photo by Tolga Ulkan on Unsplash
Spicy language ahead
I tend to post these types of stories on my alt account but this one I just had to share. It is a long story and I am in a lot of pain but I will do my best to summarize things.
About two years ago out of the blue I started having ankle and foot pain. I am not stranger to random pain in my body. I also I knew doctors would not take it seriously (I am a woman. Medical gaslighting / dismissal has been the default from doctors my entire life)so I let it go on for several months until I couldn't take the swelling and the pain anymore.
My FIL suggested a podiatrist he has seen and liked. This doctor spent more time talking to my husband about things unrelated to my issues than talking to me. He completely ignored me and did not do a physical exam except sensory stuff with a tuning fork.
He determined that my issue was neurological specifically something in my spine like a slipped disc because I have decreased sensitivity. Mind you have a neuro condition, and a bunch of other things. Yeah my nerves are in fact fucked up but no one cares and I get no treatments for any of it.
He wouldn't even do an xray which was the whole reason we went to his office. I am disabled and am 90% home and bedbound. Getting out to dr appointments often leads to difficulties such as going into near syncope(fainting or almost fainting) because they staff never listens when I tell them I cannot be upright for any length of time or I faint until i actually faint/have a syncope event. Then they treat me like I am attention seeking. I can't help it, it's part of my neurological issues.
This led to my PCP (at the time she has since been fired) telling me I needed to go to pain management and jump through a bunch of hoops before she would consider doing something about my pain. Again I am disabled and couldn't physically do the things she was asking. Disabled people rarely get accommodations required by law. The podiatrist wanted me to get an MRI of the spine but refused any imaging ultrasound or MRI of the foot /ankle. Da fuck? This thing is swollen like a severe sprain/break. The limited physical test he did(point my foot up/down and tuning fork) I failed not because a neuro issue(necessarily) but my fucking tendon and ligaments are torn.
Also at this time I was not on any medications for my POTS /fainting disorder (it's more complicated than that but for simplicity sake I will call it that).I also told her how I went into near syncope just being upright at that dr, and she still refused.
Side note: She is also my husband's doctor. Whenever he pulls a muscle or has a minor injury he is given pain medication immediately and has never once had to jump through any hoops or get any testing before to getting treatment(he is on other controlled meds as well)-even when his tests come back negative/no findings his pain is still treated.
So I got nothing and just dealt with the pain and carried on like normal. That is until my swelling was getting so bad my shoes were starting to not fit. I then went to urgent care one day and had xrays, the doctor there was nice enough to give me a couple days worth of Tylenol3.
I have a life threatening reaction to NSAIDS so I can't take Advil, naproxen etc. 10-40% of asthmatics have a potentially deadly reaction to NSAIDS. This is not rare yet doctors treat it like I am "drug seeking".
I am allergic to all kinds of shit they have no problem believing those allergies.
They did xrays at urgent care and sent me home. I was told there were no findings on the xrays but that was incorrect. I found that out a few months later.
I was referred to ortho who did some more xrays, said I had tendonitis in 4 tendons and refused an MRI/ultrasound of the foot/ankle. This is despite the radiology report noticing a few abnormalities particularly some due to chronic inflammation. RED FUCKING FLAG .
This ortho was a complete asshole and actually made jokes about my disabilities. This unfortunately is not uncommon. This kind of abuse from so- called medical professionals happens all the time to patients like me. He basically implied I was hysterical and being dramatic wanting these very standard tests.
Yes I psychologically manifested the swelling that is so severe my shoes don't fit. A miracle! /s
My (new ish) primary care doctor did prescribe a dose of prednisone and a small amount of tylenol 3, but he had no idea what was going on though he did suspect it was auto immune related.We spent months stabilizing my vitals so I could faint less and the ankle was like the last priority. I don't blame him for this , but feel he could have done something. Apparently he is friends with the ortho and took his word that I was "fine".
Months go by and I read the radiology reports, there were abnormalities in the xrays -damage caused by chronic inflammation.
During this whole time my pain is just increasing and is quite unbearable. Again.I had no pain meds except a couple weeks(2 pills a day very small dose) worth of mild pain meds but this was months after that.
Eventually it got so bad I was tempted to drain the thing myself since no one gave a shit. A friend recommended an ortho clinic and so I went there.
Keep in mind this is the 5th doctor I had seen about this issue. Not one ordered additional imaging of the foot/ankle. Also not one actually did a full physical exam. I know what those are supposed to entail it was literally my job as an SP for years .
The first question the new doctor asked after seeing the xrays was "why haven't you had an MRI?' "Have you consulted a rheumatologist"? I told him no one would give me one.
He did a quick exam and ordered one immediately. He also said he wants to see about draining and sending it to a lab.But needed the MRI first to see where the swelling is coming from. I asked other doctors for this and they scoffed at me .He brought it up.
I just got the results. Guess what? I have multiple tears in my tendons and ligaments. I have lots of scar tissue and "gunk" (not sure what the dr meant by that lol) I need surgery.
Ortho is also expediting rheumatology referral as he thinks this is inflammatory/autoimmune related. I have only had elevated inflammatory markers for literal decades. It has never lead to further testing or investigations. DECADES.
So yeah. I have been in agony , been dismissed every step of the way and my tendons and ligaments are torn, scarred and a total mess.
If I were a man this would not have happened. I have seen time and time again how differently men are treated while women with serious health issues are brushed off. I mean it only took 30 years(onset in childhood) for a POTS diagnosis even after hundreds of fainting episodes some resulting in injuries because of this misogynistic gaslighting bullshit. I have very obvious mottling and cyanosis, you can see my legs turn blue the moment my feet hit the ground.
Must be the "hysteria".
I do not have a surgery date yet. I have a PCP appointment next week. I hope I can at least get something for the pain until the surgery. Ortho said something about wanting a rhuem consult before the surgery, but we shall see.
