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How do I go about going to get help for chronic pain?
Hello, I came across this support group very recently, and I had to get the courage to post; perhaps talking with people who've been through this hell like I have might make it easier for me to get the courage to go see a doctor.
My name is Devin, and I'm 22. I feel really embarrassed talking about this with people who have probably experienced worse than I have, but the pain is getting so bad that I can't ignore it anymore. I'm going to get a little personal in terms of context to explain, so please bear with me, it could get a little long.
I've been experiencing really terrible pain in my wrists, shoulders, back, hips, and legs since I was in second grade. So, basically, 7 years old. Maybe further back, but my memory doesn't exactly go that far.
I was never able to carry things very well. I was never able to walk or run very well. Even standing sometimes is painful.
I can stand and walk for maybe 10-15 minutes before I start experiencing stabbing pains in my sides and legs. Not just a normal ache you get when you exercise, this was an unbearable sharp pain that feels like I was speared in several areas. Sometimes the pain gets so bad that it just makes me want to cry. This was a repeated thing when I was young. My parents never picked up on it properly, and my school teachers never picked up on it, and often they would make that pain worse. While my parents made fun of me, my teachers often got angry and annoyed that I was noticably slower than the rest of my classmates.
The only thing I managed to get checked out for a doctor for was for my shoulders, and the doctor actually found that my shoulder blades were grinding against my ribcage. I ended up getting this checked out when I was 17, so even then it was over a decade later when the problem first occured. My parents still blame me for my reoccuring pain. My shoulder pain gets so bad that my arms actually shake uncontrollably (I think they actually described them as tremors). I can't carry anything remotely heavy because not only does it trigger the pain, but it makes my arms shake. I do not have very good muscles, and I'm unfortunately quite weak in the arms. Along with my shoulders, my wrists hurt and feel like they grind too. I can crack both my wrists *repeatedly*, and it's not like a normal "pop". The pain has been basically progressing into my fingers on top of it.
I haven't been so lucky with getting understanding from my parents when it comes to my physical pains. So, after a few times of trying to make it known that I was hurting when I was younger, my parents would blow me off by saying "You're too young to be having that" or commenting on the fact that I was out of shape. Eventually, I started hiding my pain, and just silently trying to get out of situations where I know I was going to experience it. Going to PE in school was hell, because the teachers didn't understand. Often, I'd participate for a short while, and then tell the teacher I needed to use the restroom, and I'd hide there for the rest of the class.
Whenever I went to the store with my parents, often they'd walk around for hours, and I'd be forced to stand with them, and I could only pull the "bathroom" card so many times before they started to look at me funny. And even when I expressed my pain, they'd repeat the same lines I quoted earlier, and they'd laugh at me. I was in so much unbearable pain, and I couldn't even cry in front of them without being called other names.
It got to a point where I just told myself to ignore it. Told myself if I just tried hard enough, it would just go away. I convinced myself for a very long time that I was the problem, and that I was just lazy and weak. It made me deeply depressed for a very long time, and I struggled to leave my room knowing that I'd end up in unbearable pain again if I was active for too long; it was a timer that basically went down everytime I decided to stand up.
Now, at 22, I can't ignore this pain anymore. I tried to work a job at a fast food place, and I felt embarrassed every single time I had to stop and sit down, even after being told I could for a few minutes. I was hospitalized recently for mental health reasons, and exercising felt like I was being stabbed with pitchforks, walking made me feel like I was going to snap in half (not to mention other issues occuring bathroom wise [incontinence] that I *think* my pain is partially causing! I tried to tell a nurse when I first went in, but I eventually backed out and lied because I was embarrassed and put on the spot in front of others. They ended up confused as to why it was in my file). I can't even sit or lay down comfortably anymore and its like all my bones that connect into joints grind together. I feel like I'm in a neverending hell, and it's so hard not to blame myself in some way because of how I grew up, and knowing how many people looked down on me for not being able to keep up with others, and viewing me as a lazy fat pest; a failure.
I'm scared of presenting my issues to a doctor. What if they don't take me seriously? And if they do, what if they don't find anything? What if it's all in my head? And if they do find something, what will everyone else in my family think? I feel like I'm in a lose situation no matter where I go. Them finding something would be a technical win, but my parents (whom I still live with) might view me even lower than they already do when it comes to my physical capabilities. I've tried to ease my mom into the conversation that I've been struggling for a long time physically, and she points at my weight and how weak I am and how I don't even try. I can't even bring myself to mention that it all started in early childhood, because I worry she'll laugh in my face.
I feel insane, and I feel stuck. I know the obvious option is to just call the doctor, but I'm scared. I kept so much of my pain to myself for 15 years because I had learned that nobody was going to stop for me and that I was the problem. I'm nervous for every single possible outcome that might occur.
I apologize for the long post and the personalness. This is the first time I've opened up about this to people in this way.
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Having chronic illness and being dismissed is terrible; having it as a child and not believed is really damaging. Your problem is real. Look for real helpers. What did they say caused your malformed shoulder blades? What kind of doctor—pcp, orthopedist, rheumatologist—did you see? Have things been ruled out? I’m no doctor, but would suggest finding someone specializing in Ehlers-Danlos and also in fibromyalgia. Some of us have more than one thing. If you can get to a clinic (like Mayo) where they have all kinds of specialists that would be great. Otherwise, use the internet to find the best qualified people near you. If you suspect a certain diagnosis research it, including looking it up on PubMed to learn as much as you can. There are helpers out there.
As many others have said, you must see a doctor and be totally honest with them.
The other thing I would do is see a mental care professional. If it's not mental then rule that out for your parents but especially for you. Then move on to a pain management doctor or your PCP. But you have to be honest otherwise how are they going to properly diagnose you and treat you?
My heart goes out to you. Please keep us updated. People in this group care, we have been there with pain, we understand.
Hi Devin. You have been very brave to endure that much pain. If you can make it to a physician for a diagnosis of why you have had this pain from such an early age and the appropriate treatment, your life will likely improve a great deal. I know, it's one more thing to be strong for. But what a better life you may well experience after that. Keep us posted on what you do. We all stick together and give each other strength. Sending you lots of positive vibes!!
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1 ReactionI'm sorry for all the times your pain was dismissed. You now have two things going on... the physical pain that you're feeling and the psychological pain from being misunderstood for so long. Now that you're 22 years old, it's time to be your own advocate. You need to be open and honest with your doctor about everything you put in your post and then follow their advice for the testing required to establish the cause of your pain, but also for a qualified therapist who can help you navigate the feeling of dismissal by those who should be most supportive. This is just as important, if not moreso than your physical well being.
Well... I cannot provide much direct and focused advice, but I will give you two of what I feel are very important pieces of advice. Never quit looking for answers and do as much research as you can. My post is a bit long in the tooth but please, please bear with me.
Now, my situation is a little different, but the process is similar. I was diagnosed with Congestive Heart Failure (CHF) in June of 2025. My left ventricle, which is the only chamber that pumps blood to the body is at 16%. Cause, idiopathic. In other words, there is no obvious cause, so it’s explained as unexplained. I have been doing my part in preparation for the worst-case scenario of a heart transplant, will I make it that far, not sure but I’m going to keep pushing forward.
Rewinding 5 years, I started getting this muscle (not joint) pain all over my body. It felt like I was 70 at 55. Could not stand, walk sleep move without pain. The only thing that seems to make it go aa was ibuprofen but even that quit working three years in. I have a damaged SI so that’s where we started 5 years ago. I finally had an RF ablation and while that resolved my sciatica and lower pain related to the injury it did not fix the muscle pain.
Over the course of 5 years this pain has progressively gotten worse and even centralized itself to my torso region. The pain has gone from 3 to 15 this time. I have seen spine doctors, back doctors, gastrologists, chiropractors, pulmonologists, cardiologists etc. I go to mayo for my CHF and while it has been a wonderful journey and they care for me like no other, I still suffer from this issue. 2026 has been the worst year yet. The pain is so crimpling I could not sleep in my bed, shower or dress and undress myself without the help from my wife. July 9th, 2026, it was so bad I could not breathe because it hurt, it was going into my neck and ears, I am losing my voice and hiccups nonstop. I was admitted to the hospital and given 3 different types of pain meds which could not touch the pain. The ONLY thing that worked in my specific situation was two shots of steroids. 5 years of pain was gone in 1 hour. Wey, for two reasons.
Number one: Never quit looking for answers. I have been to almost every medical discipline but the correct one. I finally have my first appointment with the rheumatologist on September 3rd. If there is one thing I have learned about the state of health in the world is there are a lot of sick people. More than we can provide care for. The only way for the medical profession to get better at fixing us is to focus on a specific discipline, we all know this but what I never gave a thought to was that these specialists don’t really have advice or thoughts about other possibilities to point you in the right direction other than your PCP and mine, well she is my Florence Nightingale. Th PCP is the ring master to help point and refer you to specialists. This brings me to number two.
Number two: Do your research. I get that AI is a controversial issue but if you use it for good it’s a resource like no other. Yes, what you learn, and share will possibly put up walls with the medical profession because some doctors don’t feel after 8 years of training that a patient would know more than them but consider this. The most important thing a patient could do is communicate the truth about what is wrong. July 10th was the first time I slept in my bed for a year. Prior to this I slept in a chair at the dinner table and when I was not sleeping, I was doing research. Research on my heart and my myopathy. AI pulls from every resource, study, written papers and written context ever published to provide the best relatable answers to your questions. Attached is the research on my heart, clinical notes, medications, procedures for my BI ventricle ICD etc. I also have one for my myopathy. All that said, if nothing else this has educated me to be able to look in the right direction and most importantly understand how to effectively provide my care givers the best communication possible as to my condition. I say things based on my self-education I probably would never been able to shar otherwise. Relate to this myopathy, I have done research on every myopathy known, tirelessly comparing every symptom and a clear result point to Polymyositis. A rare autoimmune disease where my immune system has independently decided my muscles do not belong in my body and it is systematically decided to kill them off. Without my permission I might add. I am 6'3" and weighed 300 pounds moost of it muscle. I have lost 75 pounds just this last year and all of it muscle. Now, polymyositis is the rarest myopathy but also the ONLY one that will attack the heart muscle as well so... is the disease the cause of my CHF? I’m not a doctor but that’s the information I am bringing to the table based on years of research.
I hope for the very best results for you and do not stop pushing forward. You are young, your body is complex but resilient. You got this!