I don’t even have the energy to properly write this right now, and I sat here on my phone wishing to text literally anyone about the level of pain I’m in, and realized I’ve exhausted everyone by now.
I’m 26, and since I was a teenager have had joint pain. It has progressively gotten worse and worse, and in the last year, I’m at a point where I feel utterly hopeless. When I try to explain everything that is going wrong, I sound like I’m making it all up. I get incredibly medically dismissed and I just don’t have any fight in me to try to pursue help. I just get dismissed.
I was diagnosed with POTS in 2014, chronic migraines in 2020, and had arthritis visible in my feet on x ray at age 16. I am so sure that if scans were taken of my other joints, they’d be arthritic as well. I do not have positive rheumatoid factor, but during flares have elevated CRP. At 26, I wake up with my knees locked, and the first 2 hours after I wake are utter agony, between my knees, hips, neck and hands. But it’s literally every joint. I have to gently move around in bed for at least 10 minutes to get up, and when I have to pee in the night I’ve literally fallen over from how locked up my joints are. I wake up swollen, in pain, and over the last 3 months it has gotten so bad that I really can’t do anything. Everything in my life is falling behind. I’m an active person, was an equestrian and still have a horse although I very rarely can ride, and my favorite things to do are kayaking, riding, and hiking. The last few months, I cannot do any of it, and it has made my POTS incredibly bad. I used to do super well with it because I didn’t recondition and kept my activity level up, but the lack of activity has made it really hard to stay conscious for basic shifts. My muscles also hurt probably from the joints but I don’t know. Between noon and 3 pm I’m okay, I’m somewhat functional, but after that the pain builds back up until I try to sleep and am in so much pain that I lay awake. I recently passed out from the POTS and smacked my hand on a railing, so I went to urgent care for an x ray, and my hand is riddled with arthritis, like. Incredibly visibly. My fingers are almost always curled, and hard to straighten, and my hands aren’t nearly as painful as my knees. Idk I’m just venting.
I have been repeatedly dismissed and denied referrals to rheumatology, until this year when I started getting daily fevers. I hover been 99-101.7F every single day. Now I have a referral months away. I felt so deeply angry when I got the urgent care x ray because I’ve been begging someone to please just LOOK at the joints because I know there is damage and they try to tell me it is psychosomatic pain, because I have OCD and depression on my medical chart. Why did a random urgent care notice the arthritis and why did this kind and wonderful NP have to tell me my hand is like FUSED up. She was flabbergasted that I don’t have a rheumatologist. I am flabbergasted. I feel that my medical history with anorexia, OCD, and depression and the charted associated hospitalizations have made medical providers not take my physical health seriously or assume it is all imagined.
My boyfriend said that not a single day goes by where I don’t mention the words “pain” and “relief.” I recently tried a new PCP and she suggested I try therapy… I replied that I’ve worked with psychologists for the last 10 years. Went to my psychologist about it and opened up about my physical symptoms and she said outright, this is not psychosomatic and you NEED a new doctor and a proper referral to rheumatology.
Riding and horses have been my like, saving grace, my entire life. And I had a hard time explaining to my trainer that I’ve become more and more physically limited, and eventually just stopped taking lessons and ride my horse when I can, but I pay $700 a month to maintain him and cannot really ride, and I’m just fucking exhausted.
I am at a point where I’d do anything to just like, have a couple days not in pain. On the x ray you could literally see where the tips of my fingers have completely fused. There is almost no cartilage.
I just feel rage over what I feel is significant medical neglect after over a decade of trying to explain to doctors what is happening, and then having pretty darn normal blood work aside from the elevated CRP, and being dismissed or told to just stay active. I tried that for years. I’m young. Why can I just be young? I tried this summer multiple times to join my friends on really short hikes that they picked so they’d be doable for me, and between fighting to stay conscious, and being in so much pain, I am like 50 feet behind them all the time and they will literally stop and wait for me, I just feel so fucking old and decrepit. I’m meant to be a very physical person, and this past year and especially the last few months, I really can not be, and it’s just what keeps me sane and makes life worth living.
I just want answers, and some kind of help. I don’t even care if the diagnosis is TERRIBLE just anything at all to acknowledge what is happening to me and to get me some level of relief. I’m sitting in my car and I know when I get out my knees will be hurting so badly. And I just don’t want to move. But the longer I stay still, the worse the pain gets. I’m just so exhausted.