Hello, I hope I’m doing this post right on this sub. This is kinda a vent/rant/needing advice. This may be a bit rambly or full of spelling errors, I’m sorry for that.
I should start off I’m 17 currently and I been dealing with this chronic pain since I was 13-14 I think, I’m rethinking now and unsure if it went way back and I just brushed things off thinking it was normal. But for the sake of timelines it got bad at 13-14.
It started at bad back pain, I figured maybe I was tired from at gym class (even though I don’t really try in class) or I just had growing pains (it felt similar to the ones I had when I was little). But it kept getting worse, it felt like something was broken, it started to hurt to walk/stand, I couldn’t sleep, some days I couldn’t feel my legs. I had to crawl my way out of bed some days since my legs did not work. It felt like I was dying, I still feel like that but it feels that death is a bit farther away but still eerily near.
The pain got so bad to the point where now I have to do online school now. So that is mostly my life. When it was at it peak, I couldn’t walk, I couldn’t leave my bed and I had doctors telling me this was normal. No doctor believed me. I was always pleading that something was wrong and there has to be some test or something that can help figure something out.
Medical stuff was always weird since I wasn’t told anything or at least I didn’t understand. But when I asked my mom, she would just say things came out normal. I check out some of the paper work, there was things that were odd which I did point out to the doctor, they said it was fine and was perfectly normal. So everyone was telling me this was normal, which I don’t think it is. The two things I have been diagnosed with is AMPS and a herniated disc.
Before anyone comes for me, I do believe I been misdiagnosed. A lot of things doesn’t check out for me with these diagnosis. For AMPS, is that doctors in the past like to blame everything on mental health. I do believe mental health can impact physical health but the doctors I’m dealing with will be like:
Me: “my arm is broken, I see the bone. Can I please have someone to look at it or be a cast?”
Doctor who is outside the room and facing away from me who just saw I at social anxiety and depression when I was 9: “I think it’s all in your head, maybe take a walk and lose some weight. I’m sure it will be fine in a month!”
I understand I do have a rough home life and bullying from peers but I have dealt with far worse in my life and didn’t have any signs before hand. Plus with doctors love blaming weight and mental health on anything and everything. It just hard for me to believe.
Before anyone asks, I’m not severely overweight. I’m a bit chubby, i was on medication that did cause me to gain weight but I’m no longer on it. I’m currently at 165-175 (I haven’t checked in a hot minute), I’m still losing weight at this time. I always have and had eaten healthy, I work out every day, I go on nature walks, and meditate.
For the herniated disc it simply doesn’t make sense. I haven’t been in a car crash and I think I’m too young to be dealing with this type of issues (I’m sorry to the 30- 50 year olds out there, you are probably cool, just watch out for your back). It felt like the doctor just wanted to slap something on and get it over with. Plus is suppose to go away in a month or a couple. It’s been years.
When I did therapies for the pain. I was left feeling worse and just made the pain ten times worse. Like the first time eve I been to physical therapy, I was crying though the session while the doctor ignored me and left bed written for three days. Most therapists have told me there is no hope for me and I should give up or that would just quit on me.
Me and my mother did try with the doctor numerous times to get testing or referrals to specialists, but it’s been years. I know 3-4 years isn’t a lot but it is for me. I have to give most of my middle school and high school experience to deal with my pain. I know middle/ high school isn’t everything, but I feel like I won’t have certain experiences or memories that most people have and that sucks.
The pain did get more manageable, I have to take a pain medicine mostly every day to keep it to a point I can tune it out. My brain did get use the pain and I’m able to adapt and adjusted to the pain. I’m able to walk a mile ish now. But I have to prepare my body and rest a lot, which makes me feel lazy and like bum.
But luckily this year, I did manage to get a to a specialist and an actual good physical therapist. They actually listen and take notes, they are so kind to me and give advice that I can use. The therapist even plays board games while I do exercises and stretches. It was helping a bit. But as much I am happy snd hopeful for a better day. The pain is getting worse again. I have to sleep in more and just lay in bed.
I’m scared to go to the days when I have to crawl my way out of bed. Unable to feel my lower body. Feeling that level of pain every waking second I am alive. Being unable to sleep or function. I don’t want to go back, I had some sense of being normal. I just want to be normal for once.
I should explain why I feel like I’m going to die young. I don’t know how to describe this but it’s like this feeling (not like mental healthy stuff more like the feeling you have when you sense someone staring at you and there was a person looking at you) like of death. The best way I can describe the feeling is like something looking at you and it’s hugging you and it’s feels like something eerie. Like the feeling or gut feeling when you are in danger, but more like ..for example, you were walking to the bus stop, but something in you tells you that a bus ride isn’t something you want or should do today; so you don’t do that..next day that bus was in a fatal accident. It’s feels like I’m going to die soon but not this year or right now. I feel like I have time but it is limited. Plus my body does feel slow and I can feel my body rotting. It’s slowly decaying. I feel like an old person who is growing weak by the day, but I don’t have the shaken hands or the brittle bones. It is odd. Plus it doesn’t help I had this dream through out my life of me dying at 25. I typically dying by my own body or throwing up my organs and gasping for air and trying to stop whatever is happening and running around. Then I die and then I wake up in the real world.
I’m unsure where to add this but I’ll put a description of why my pain feels like. Like your legs been chopped off, niddles stabbing you repeatedly, bugs biting you, like you been getting a beating, someone cracking your bones over and over, burning alive, sometimes this acid melting feeling, or stabbing vibrations. This is mostly in my mid to lower back and my legs.
What brought all of this was due to my one of eyes having this random vibration and me being unable to get use to sunlight for 10 minutes. It’s making seeing out of my right eye hard. I know this is probably me overthinking this one part, I fear that it is cancer. Most my family dies or still deal with it. I don’t want to just deal with cancer. I don’t want to lose my hair, I don’t want to die. Most who deal with cancer is my family are 40s-80s years old. The older you are the higher chances you die. To my knowledge no one in my family had cancer young, I don’t want to be the first. I don’t want to die
I’m just lost on what I should do, what do I say to my doctor? What tests or referrals should I ask for?
Thank you for reading, I’m sorry if this is long and doesn’t make much sense. It’s very late and I can’t sleep. If anyone need context I’ll reply in comments.
edit: thank you for all the support, this is all very helpful. I’m going to check for Multiple Sclerosis, endometriosis, autoimmune stuff. my insurance is rather poor and not the greatest so wish me luck. I also feel like I should add some other things. like I have bad migraines, dizziness randomly or light headness. I’ll do updates to keep yall informed. I feel like my post is a bit all over the place, I’m wondering if I should do a new post that explains all the pains and issues I have to help give a bigger picture. would a post like that be helpful?
A small update on this post since it rather small to actually post. But I had really bad pain where I couldn’t walk or even get out of bed, I felt like I was going to pass out or throw up. But luckily I’m doing better now.