u/Sea-Recording-2855

istg if i get one more referral that just sends me in a circle im going to loose it. First I got to sports med because well I am an athlete. They say its growing pain and leaves me alone. I then go to my GP who sends me to rheum who sends me to PT who sends me back to rheum who sends me BACK TO SPORTS MED. No one looks at the whole picture. Everyone just focuses on the fact I have joint pain and am “very hypermobile.” No one asks about any other symptoms. No one will be able to find the right diagnosis IF THEY DONT LOOK AT THE WHOLE PICTURE. Its so annoying. The only referrals I probably need are GI and cardiac and well I don’t get those BECAUSE NO ONE ASKS. They walk in and immediately start talking about joint pain just because the little questionnaire doesn’t have the boxes for my other symptoms. Im so tired of this. At least sports med can get me proper bracing 🫩🫩

I have hypermobility (I suspect hEDS, my rheum just sent me back to sports med to see what they think) and every time I eat a full meal (and sometimes a larger snack) (and sometimes any food at all) I just feel HORRIBLE. Im nauseous, I'm larthargic, I have horrible brain fog, I am achey and just feel like genuine shit. I don't understand or know why this is happening. Is this something I should be concerned about? My dad said I am "fine" because he "feels tired after eating as well." He has GERD, but I do not know if that is connected

I didnt even know I had a fracture until I got a hip xray for chronic pain from hypermobility (checking for arthritis). Turns out I have an avulsion fracture on my left anterior superior iliac spine. So long superior people

(I didn't know what flare to put this under)

I am a high school student with hEDS and suspected PoTS and MCAS. I have known for a long time I want to work with kids and in the medical field. For a while I thought about becoming a doctor, but then realized I wanted to really build a relationship with my patient (I wanted to be a rheum or PM&R). Thats when I stumbled upon peds OT. It genuinely seems like such a rewarding career. I am already a lacrosse and swim coach so often work with younger kids (elementary age). I was just wondering, how physically taxing is the job? My hEDS isn't severe, but I do experience frequent subluxations/dislocations of the knees, hips, and shoulders.

As it is the end of the season, it is time to make my POI piece for next year. The only downfall is I have no idea what to do. I was thinking something along the lines of ADHD, but I don't know how many options there are for poems, plays, or prose in ADHD. How do y'all reccomend I come up with a topic?

What do y'all do for fun or in your free time? I used to crochet but it hurts my hands too much even with compression gloves and my insurance doesn't want to cover ring splints. I'm tired of just watching TV to waste time.

I'm so tired of hearing everyone say "oh you just need a good additude" or anything along those lines. ITS REALLY DIFFICULT TO STAY HAPPY AND JOYOUS AS YOUR WHOLE LIFE FALLS APART???

I'm so tired of medical professionals not listening. I may not be good at explaining what is happening in my body, but I sure as hell know that something isn't right. If they don't understand what I am saying, why don't they just ask clarifying questions instead of disregarding everything I said? Why do I have to fight to be heard? Or for referals? Isn't that their job? Insurance is a whole 'nother thing...

I'm so tired of having to change my life to not over do it. I miss being athletic everyday. I miss running and jumping without worrying about the future flares or dislocations. My family doesn't understand and constantly calls me lazy because I spend most of my time in bed now.

I'm so tired of this. I don't even have a dx yet because no one will listen to me. I have a BJHS dx WHICH ISNT EVEN USED ANYMORE. I also have a hypermobile arthlagia dx which is mostly just a symptom...

I really don't want to go back to the rheumatologist because I know all that is going to come from it is "oh here is a referal" or "there is nothing we can do." I am so so tired of this, but the world keeps spinning so I keep going as well.

I am getting medicated for ADHD next week. I was wondering if anyone had any strange experiences with ADHD meds? I read some places many ADHD meds make you loose weight which sometimes worsens people's EDS symptoms. I know ADHD and hEDS are cormobidities so I figured I would ask here.

I am asking this question because I was just thinking, if someone were to push through all of their issues and be "functional", yet still suffering they would probably be less likely to believed than someone who actually listens to their body. Honestly saying that sucks because no one should have to put their life on hold just to get a diagnosis. What do y'all think? Has anyone had any similar experiences?

I cannot stand with all my weight on my right leg without my hip subluxing or sometimes completely dislocating. Has anyone used a hip brace or K-tape to help mitigate this? If I were to get a brace I would like something pretty discreet and can be worn under clothing.

Editted to fix grammar

Howdy!

I didn't really know which flare to put this under so I hope this is right and allowed.

Yesterday I had my three month re-evaluation with physical therapy where I was discharged as they saw nothing had changed instability wise and my pain levels got worse. I was then referred back to my rheumatologist. I am currently dx with Hypermobile Arthlagia and Benign Joint Hypermobility Syndrome (I thought they stopped using this term) (I suspect I have hEDS) (which may not even be a term anymore soon wtf). I don't know what to expect moving forwards. I don't know what to do moving on. Last rheum appointment I was essentially told PT is the only thing we can do for you. Well it did not help, and now I don't really know what to do. I'm thinking of bringing up custom functional knee braces to my rheumatologist, but I have no idea if its a good idea. I may also see what she thinks of a cane or something similar. Has anyone else had PT fail? What did you do after?

EDIT: I worked with two different physical therapists at the same time. Both of which were hypermobile aware, one a hypermobile specialist

Howdy!

Yesterday I had my three month re-evaluation with physical therapy where I was discharged as they saw nothing had changed instability wise and my pain levels got worse. I was then referred back to my rheumatologist. I am currently dx with Hypermobile Arthlagia and Benign Joint Hypermobility Syndrome (I thought they stopped using this term) (I suspect I have hEDS) (which may not even be a term anymore soon wtf). I don't know what to expect moving forwards. I don't know what to do moving on. Last rheum appointment I was essentially told PT is the only thing we can do for you. Well it failed, and now I don't really know what to do. I'm thinking of bringing up custom functional knee braces to my rheumatologist, but I have no idea if its a good idea. I may also see what she thinks of a cane or something similar. Has anyone else had PT fail? What did you do after?

I have my three month re-evaluation coming up tomorrow for physical therapy and I am riddled with anxiety about it (not good experiences last time I was in PT with re-evals). I came up with a list of questions to ask just because I am bringing up more structured bracing.

Main questions

• Before my hypermobility diagnosis, my instability was explained as movement patterns and muscular imbalance. Does hypermobility change how you interpret what’s happening?
• Would a hinged or functional brace make sense for my symptoms?
• (if yes to functional bracing) Should I go through an orthotist so I can ensure they fit properly?
• How is it possible to have knee valgus and my ankles roll out at the same time?
• Is it possible to keep playing lacrosse without constantly worsening?”
• What’s the next step if I keep regressing?

IF TIME

• Are my hips/ankles contributing to what my knees are doing?
• What signs would make you concerned about lacrosse participation?
• What do you think is the main driver of my symptoms right now?
• What would progress realistically look like for me over the next few months?
• At what point would you consider referring me back to my rheumatologist?
• What modifications would you recommend for lacrosse practices or games/tournaments?

Brace related questions

• What could downsides be to functional bracing?
• What is my current brace meant to address, and is it matching what I have?
• Would I benefit more from a custom-fitted brace or an over-the-counter one?
• At what point do you decide a patient has outgrown soft braces and needs something more supportive?

I was just wondering if y'all had any advice or if my questions are good (or horrendous thats important too). Have a lovely day :))

CW: Medical gaslighting

Im frankly exhausted. My body and brain are both against me. The one thing everyone swears by made me worse. Now I have to go to my physical therapy re-eval and explain how I am in more pain because of the one thing that was supposed to help me. I am going to bring up functional bracing, but if I get told that "oh we should keep trying PT" I am going to lose it. All I care about is lacrosse. Its my autistic special intrest. Losing lacrosse would cause me to lose myself. I have been told by far too many medical professionals that "I don't need more support" and "I'm fine" and "its just growing pains". Im so tired. At this point I dont even care if functional braces would cause atrophy. If they allow me to play lacrosse, they could like remove my bones and I would be fine with it. I have read so many articles "oh functional bracing is great!" or its "NEVER BRACE YOU WILL DIE." I don't understand. I don't know what to do. Im so tired of this. I want a defenative answer. Hell, I don't even know if my knees are "unstable enough" for more structured bracing. My rheumatologist told me to bring up bracing months ago, but my brain won't let me. I panic and people please and say I'm fine. I'm not fine. Everything is becoming more difficult. I could barely walk after making dinner last night because my knees were hyperextened the whole time. That happens and I am still able to convince myself I'm not impacted enough to ask for help. I'm not effected enough to need more supports. How do I get out of my head? How can I properly communicate my symptoms to my PT? I have a therapist but I can't see her until June.

Hello! I am an athlete (for now) and use two knee braces while playing lacrosse. I use this brace for my right (more hypermobile) knee and this brace for my left. These are not supportive enough. Majority of my knee instability is side to side and my patellar instability is also side to side. I have knee valgus when ever I move which is something I have spend months in PT trying to fix but without much result. My pain has only gotten worse. I have a re-eval on Wednesday where I plan on bringing up my concerns about my current knee braces. I have done so much research on this. I am aware of the muscle atrophy risks, but I also believe that modern research has disproved it (can send articles if needed). I personally have more strength in my right leg. I wear a brace on my right leg every single day. I was just wondering if anyone had any knee braces they would reccomend or how I should go about bringing this up to him. Thank you in advance!

One thing I don't think many able bodied people in my life realize is how much my medical issues affect my life and how I see myself. I dont know who I am without my pain or other symptoms. As much as I want to feel better and not be sick, there is a part of me who doesn't want anything to change. It's so much of my idenity now. It's replaced hobbies and socializing. It has become part of who I am.

I've been in physical therapy for two months now. I'm doing everything I can to get better. I do all my home exercises and give my 110% every session. Yet somehow, somewhere, I picked up the idea I am no one without my symptoms. I haven't gotten better so I dont even know why I'm thinking this. Its exhausting to constantly belittle myself on how much help I actually need then turn around and not want to get better. So much of me wants to get better, yet there is always that little voice inside of me begging me to get worse.

I just needed to get this out there in the world. I constantly feel like a fraud or a faker when I mention or complain about my joint pain and subluxations (or even any other symptom). My worst joints arent even *that* hypermoblie (I barely got the point on the beighton score). It drives me insane how I can never feel like my pain is enough because of how I constantly compare to other people. I convince myself my pain doesn't matter because I can play lacrosse or be active or do any of that stuff. Sure I wear knee braces while playing lacrosse, but I can do it. Because I can do all these things that so many other people can't, I feel like my pain doesn't matter. Same with my GI issues. I have almost constant nausea and such horrible acid reflux, but because I can still eat and properly sustain myself, I manage to convince myself it isn't important. This mind set is slowly ruining my life and I don't know how to stop. I convince myself I can sufice without any help, rest, aids because I still can. I am terrified to even approach my pt about the thought of more structured knee braces for lacrosse (mine don't do anything anymore) because I can still play with my current fabric ones. I have a constant imposter syndrome in every space I am i. Not sick enough for the healthy. Too healthy for the sick. I belong no where and everywhere at once.