I’ve been really struggling with my joints lately, my knees keep going out of place or giving out on me, and my hips are in excruciating pain. It hurts to move and I feel like I’m almost waddling because bending my knees and hips make them hurt worse, and I end up over compensating for the side that hurts and end up hurting the other side. It’s really getting in the way of living and I don’t know what to do. I’ve been thinking about using a cane or some kind of mobility aid on my bad days but I don’t know how to ask my dr about it. My PCP doesn’t know how to help me, my rheumatologist said he can’t do anything for me and won’t help me because he doesn’t know about hypermobility, and my pain “specialist” doesn’t help at all, they keep telling me that I’m too young to be in pain. I don’t know what to do because my mobility is becoming impaired and no matter how hard I try to tell my pain specialist they’re not listening and getting a second opinion has been a nightmare as there’s almost no one in the area who specializes in pain, I’m at the largest neuro/ pain center there is and they’re refusing to help because “im too young to be in pain”. I don’t know what to do nothing I’ve tried is helping, and I’m loosing all the little hope I had left.

Generalized pain


Hypermobility Syndromes

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  • NonbinarySlytherin


    I'm not sure how to help but if I were you, I would demand whoever isnt helping you to write a letter for the record that they aren't helping you and why! This will be a fight but they won't want it to be on record. I know some people who use that for discrimination purposes. Also, ask if you can audio record your discussion. But before that, check the laws of where you live. If you are in a one way state then one person has to consent. These probably won't be able to be used in court but you can talk to administration of the hospital. Personally, I record because of my bad memory. Pain can affect the memory too, right?! 😉 Hang in there.

  • Izzybee


    Thank you, I’m in a one party consent state, my mom usually records the appointments, she wasn’t with me on my last one and I didn’t think of recording it. I’m gonna try and call my case manager from my insurance company and see if they know of any resources or know someone who does, because I’m in pain and I’m dislocating my joint and it sucks.. but thank you so much for your response and your kindness it really means so much to me ❤️

  • NonbinarySlytherin


    Well, if you ever need someone to talk to, I am willing to talk via private chat on here. My partner has faced this before and that's why I suggested these. Also, it may be good to see a therapist. Sometimes they can write letters and have resources to help you mentally so you can be ready to face the dumb doctors.

  • WillowDecay


    I had the same issue my entire life until I saw an orthopedic surgeon. I had both knees and both hips reconstructed as I had torn my MPFL ligaments in both knees and torn the cartilage in both hips. My surgeon has known me since 2012 and has done countless touch up surgeries since then. I get everything touched up and then I’m ok for a few years. Also, pain specialists are hard to convince to help. I’ve gone through quite a few. I ended up at my wits end and got referred to an opioid pain management doctor. So that’s helped amazingly as well. Depending on where you’re located, you might want to try to get referrals to those two types of doctors. I still have to wrap my knees with bandages or braces, use canes or crutches, and a LOT of ice every so often, but the surgeries have helped tremendously!!! I hope you’re able to find what helps for you soon!!!

  • BubblyBee


    Similar to Willow, I tried the orthopedic surgeon route originally and did rounds of physical therapy, but my best success has been after I went to a pain management doctor who administered a cortisone injection into my knee. Now that the pain is down, strengthening with PT and yoga is easier. Before my shot I also used KT Tape around the knee and still do as needed. Hope this helps and that you feel better soon.

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