full image - Repost: I feel like I'm losing control of my life because I just have no diagnosis, no pain relief, and doctors who seemingly don't care [Long] (from Reddit.com, I feel like I'm losing control of my life because I just have no diagnosis, no pain relief, and doctors who seemingly don't care [Long])
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I just don't know what to do anymore. This is more of a vent than anything, so you can honestly skip and downvote if you want. I don't have any official diagnosis other than fibromaylsia, but the doctor and I both agree that it doesn't fit; she said she was only listing it so that I could get any kind of pain relief since the symptoms can match enough. She referred me to several specialists, but only two (neurologist and a pain management doctor) has scheduled me and seen me. Both were fairly dismissive because their first and only rounds of tests came back normal; I only got a bit of something from pain management because of my mom but it was still a fairly disappointing visit. The others have not contacted me. I contacted my PCP, the doctor network's referral office place, and their offices directly and left several messages. Nobody has called me.I'm losing it. I'm literally losing it. I'm in so much pain all the time, and it keeps getting worse. I was a regular gym-goer until pain really struck in mid-2021 (looking back, I can see sneak peaks of it happening as early as 2014), and now I have the bare minimal ability to walk due to the pain in my back, hips and legs. I rely on a wheeled walker in public or a cane at home. But I don't even go anywhere anymore. I don't have the energy or ability to. I rely on grocery and pharmacy delivery, Amazon, and my partner to get me what I need (I don't live near any family but I do live with my partner). I only leave my home these days to work, but I've had to ask to work from home so much purely because of pain (I work a hybrid schedule, but there's no need for me to be in office other than corporate wanting us to, so I can ask to WFH sometimes on my non-WFH days). Anything else often hurts or fatigues me too much.I was going to the gym because I struggled with my weight as a teenager, and I was on a great weight loss journey. Now my weight is yoyoing hard, because I'm either barely eating because I simply can't get out of bed to eat or do any of what it takes to make food. It just hurts too bad. When I can eat, I either have to rely on doordash, instant meals, or for my partner's schedule to have synced to where she can feed me (we work pretty opposite shifts). I had so many hobbies and interests and ambitions, and all of those were crushed. I don't have the energy or physical ability to do them anymore. I can't stand long enough to cook or bake. I can't sit in any position long enough to do any kind of art; I haven't been able to paint on my canvas or models, watercolor, or sew. I can occasionally woodcarve, knit or croquet, because I can more easily move if it's a small project, but my hands can so easily become too shakey, too stiff, too numb, too pained to do it. It hurts my eyes, it hurts my hands, it hurts my back and hips to sit and play my PC games, to do any of my coding projects or digital art, to write, or even sometimes to recline in bed with my switch or gameboy. No matter how many pillows or heating pads. I have a two hour limit on my good days. Fucking forget traveling. I used to travel and drive all the time. I had ambitions of going all over the world. I can barely make the ten minute commute to my work in my car, with heated seats, without wanting to sob, on bad days. I tried to go on a week long vacation with my partner, and I ended up in such severe pain that I was completely bedbound for two and a half days of the vacation, and in still enough pain the other days that I struggled to enjoy my time. It was misery. I felt like I ruined everything even though she said it was fine, and that she liked that we just relaxed and did nothing on vacation by the hotel pool. I can't help but even think about how, if I somehow figure out what's wrong and just halt the decay of my health, that I may not ever even enjoy other countries because all I can think about is stuff like "how will I bring my walker or mobility aids to walk in certain hill/stairs-heavy areas of some countries" or "can I even visit this country due to what I'm prescribed/could be prescribed in the future" or "would I even be able to enjoy being in X country or will I end up bedbound half of my trip and waste my money/time there that I could be using doing all the things on my bucket list."I've never struggled with sleeping, and I could fall asleep fairly quick, never really had insomnia. Now I can barely sleep some nights because of pain. I wake up throughout the night. My comfortable bed seems unbearable sometimes. I can't get comfortable enough to go to bed on the couch, in my armchair, the floor, in the hotel room bed, my own bed. Despite heating pads, tons of pillows propping me up, my partner providing comfortable hugs, the fan and temperature just right. I can doze off, but then I'll wake up because I have to quickly reposition myself. I can feel my back starting to almost seize up, and if I don't adjust quick, it'll get out of control-horrible. I've had minimal experiences with being depressed or anxious. I've been fortune to only really have depression during my teens that I was able to escape when I moved out and went to college. I've developed some depression at all of these things I've been losing, severe anxiety related to having to call out or cancel plans with friends and partner. It consumes and eats at me all day that my friends are starting to hate me for having to cancel or decline plans, that I can't do certain activities anymore, that I'm going to eventually get in trouble with my job for how much I have to ask to work from home because it hurts. It HURTS. I've become more depressed because I just don't have the health to bathe myself sometimes, let alone have control over my weight or take the extra time to look nice like haircuts or styling due to pain. It makes me feel like a disgusting fat slob monster. I only really noticed this recently to be honest when I spent nearly four hours agonizing on whether I should ask my boss if I could work from home because I was so afraid of getting in trouble for it, and it's something I plan to bring up with my PCP soon. Before this current PCP in terms of chronic pain/illness-related visits, I've spoken with about seven different PCP and two different pain management doctors, three physical therapists, one endocrinologist, two nurse practitioners, and three neurologists in three different states (I was moving homes for various reason) in the hopes of being treated seriously. None of them have any answers for me, despite me getting a back and brain MRI and an EEG. Three of the PCP were so rude and hateful towards me for being in pain due to my age (I'm currently 28, almost 29). My current is by far the best, but besides the neurologist and pain management, she referred me to a gastroenterologist, an orthopedic, a cardiologist, and an endocrinologist. None of those have contacted me despite my multiple attempts. I'm on: duloxetine, gabapentin, celebrex, and methocarbamol. I was on baclofen but they switched it for the methocarbamol. It feels like none of these help me in the slightest. I also religiously take tylenol and excederin extra strength.When I went to pain management last time, my mom ended up coming with me, as she has been receiving pain management herself for over 30 years for her own mystery chronic illnesses. They want to give me an IV pain management treatment, but because they said they couldn't start it for another month, she pushed them to give me something now, and it was a week's worth of hydrocodone-acetamin, which also felt like it did nothing. This appointment was also two months ago, and they have never contacted me about doing this IV pain treatment, despite me and my mom both calling their office directly about it, as well as me telling my PCP doctor. I tried medical marijuana (edibles, oil, and smoking), every OTC medicine you can think of, various pain relief ointments, three heating pads, some ice (I hate ice, so barely used it), physical therapy with three different therapists, swimming/water therapy, yoga. I feel like I've tried most of what I can reasonably do right now.Current symptoms: Primarily in right foot, I have tingling, numbness, kind of a pins and needles feelingCold feet and toesLots of joint-ish pain in my knees. It's also primarily my right leg, but continued numbing, tingly kind of pins and needles pain that kind of electrifies when I walk on bad daysLots of tight/pressure-style pain in lower back, with some general kind of achy/sore pain there and in my upper back and neck. But this lower back pain is the kind that literally makes me have to bend forward to relieve it and is what keeps me from walking most daysKind of a stiff neck, it normally will only focus on one side but will switchPrimarily right arm, but lots of shaking and twitching (I am right-handed) depending on the pain level for the day. Kind of a pain-related spasm if that makes sense, as I only really experience it on my worst pain daysCold hands and fingersChest pains, like mild pressure and struggling to breathe. Especially when I’m trying to recover from fatigue or doing something. Severe fatigue; I get so goddamn sleepy and exhausted so fastKinda gross, it's bathroom stuff, but I've also been having bloody stool on and off for a few months Bright red. From what I understand, this often isn't dangerous, but it's why I got referred to the gastro doctor, to do a colonoscopy. When I told my PCP, she was immediately concerned. My first through related to why this was happening was because there was a point where I was consistently taking a LOT of tylenol, like 30+ a day, because I just simply wasn't sure how else to try and manage pain, but I stopped this practice two months ago. It feels like because I have no diagnosis, nobody will take my pain seriously, but at the same time, nobody seems interested in finding out what it was. I was hunting for answers for a year and a half, but the past 6 months has basically turned into a “I can't take it anymore, I just need RELIEF” cry for help. I have an urgent care appointment tomorrow because, even though I have an appointment with my PCP on the 25th and I know urgent care will do nothing, I just don't even know what to do anymore. I'm exhausted. I'm in pain. I want to know what's wrong, and I want relief from it.Everything I've been looking up is telling me that it's something akin to bulged or slipped discs that are poking nerves. When I had my back MRI, they noted that the L4-L5 has a “mild disc buldge and a small posterior annular tear” and L5-S1 being “intervertable disc dessication. Mild bilaterial facet osteoarthrosis”. I had it in one state, and I took the disc itself to another doctor in my current state, and he looked at the MRI disc, and he told me that everything looked perfect and that he saw nothing wrong with me. I took this disc to a second doctor in my current state. He claimed that the disc didn't work, but based on the paperwork I gave him, that I should be fine if I just took some tylenol as needed. I’ve also been told by chronic illness friends that it could be related to genetics, especially since my mom is also chronically ill and has chronic pain. She’s often my go-to for advice and help. When I visit my PCP, I plan to ask for another MRI or just something to prove that I am indeed in chronic pain, as well as to basically contact different specialists. I don't know what to do anymore beyond that. I don't know what to ask for at this point, because while I still want an answer, I just want some goddamn relief. It feels like doctors don't just not care if I suffer, but actively want me to. I had a bilaterial masectomy in January (transgender healthcare related, not chronic illness/pain related), the nerve block didn't work, and the hospital refused me any pain medication. It was agony. I have repeated told every doctor that I've gone to that I'm slowly losing all I have no hopes for my urgent care appointment tomorrow. But I just don't know what else to do, what to ask for, or even what will work. I just want my life back.Edit: added more symptoms
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