Seeking Advice on Hypermobility Disorder Diagnosis

I'm planning on making a appointment with my PCP to talk about possibly having a hypermoblity disorder (me and most my family are hypermoblity and have joint pain [+some other things that from my search could be caused by one]). I'm not really sure how to go about this though? She knows I've had chronic pain for years but I never have brought up anything to do with hypermoblity before and the only testing she has done before is for a type of arthritis (negative). Any suggestions on how to go about this?

Seeking Relief for Daily Leg Pain with IST/POTS

Best ways to help with the daily leg pain? Most stretches hurt and I have IST/POTS as well. Looking for exercises or vitamins! I'm already in physical therapy.

Severe Pain Cutting Steak: Finger and Wrist Braces?

To hypermoible people out there, have you had severe pain cutting steak and eating it? I found out this isn’t normal recently. I was wondering about finger and wrist braces or supports to get to help me with things like that. Does anyone have any suggestions?

Finding the Right Exercise Routine for Hypermobile Folk

What are peoples thoughts on Pilates? My physio is super proud of my improvements and wants me to start Pilates. I have managed to commit to daily physio (takes about 5 minuets my routine) and hula hooping daily for 35 minuets (started at 30, increasing by 5 minuets every month until I get to an hour). There is a gym a 10 minuet walk away from me that does it twice a week, but I’ve read stuff online that the benefit for hyper mobile folk heavily falls on the trainer and their understanding of HSD/hEDS. However I did find a 20 minuet YouTube video on Pilates made for hyper mobile folk - so might up my hoop to 40 minuets and then add that 20 minuets of Pilates to it too to make an hour of exercise every day. What do people think? What do you guys do?

Connection between Hypermobility and POTS

does hypermobility have any connection to Pots or not because When I'm carrying something uphill, I always get really out of breath but have had tests, but it came back negative, so I was wondering if I need to go back to the drs but the wait will be way to long to get seen or hear anything back

Coping with Chronic Pain: Getting to Know the New Me

I had quite a hard thought just now - it made me feel sad but I’m being mindful of it. I’m seeing it, giving it space, but don’t want to dwell. I thought, at some point I’m going to forget what it was like to not be in pain. My symptoms flared up and diagnosis came when I was 27, so I’ve been managing for about a year now (nearly 29). Although this was a sad thought, I just think I need to get to know the new me. Get to know how to thrive despite it - as I’m blessed to have an amazing job and support network. Anyone else ever have these thoughts?

Hip Pain: How Can I Find Relief?

my hip has been in so much pain for a few days and I don't know how to help

Frustrated with Undiagnosed Autoimmune Disease Symptoms

im on my journey of being diagnosed with an autoimmune disease and feeling frustrated :(. ive been tested for all the common ones, + thyroid and rheumatoid test that came back negative. my only outstanding symptoms are hypermobility and joint pain, plus the normal keynotes of an autoimmune disease. is there anything specifically i should ask to test for? (i am a teenager, been testing since summer 2022)

Debilitating Hip Dislocations: Seeking Advice

I dislocated my hip yet again yesterday. I'm in agony. I do physiotherapy every day to strengthen all the muscles around my hip and I am having less frequent dislocations. But I hate permanently worrying when I'll next be debilitated. Has anyone found anything else other than physio and strength training to help?

Need Help with Pain Management

anybody have some good pain management ideas? recently. I'm going through a flare up and it seems like nothing is working. would love some new ideas other than ibuprofen and hot baths. I do smoke occasionally to help regulate my pain but I try to keep it only for my really bad days. I just don't know what to do right now

Gas Leak Symptoms: What to Look Out For

Can someone clarify what the symptoms of a gas leak are? I have sore throat (kinda burns), lightheadedness, mild nausea, off balance and I feel tired out quite out of it.

Advice for a Computer-Based Course with Hypermobility?

Hey, new here so sorry if I'm awkward 😅 I'm wondering if anyone has any advice on doing a computer based course with hypermobility? I have it really bad in my hands and struggle with writing, tying laces, doing buttons, that sort of stuff. I'm scared that my hands are going to hold me back in this course. Has any hand/wrist braces or anything helped anyone? Thanks.

Do I Really Have Chronic Pain?

I don't feel like I deserve to say I have chronic pain. I can typically ignore my pain, and it very rarely causes me extreme discomfort. I've also been told I have a low pain tolerance, so I don't know if everyone has back and joint pain like this and it just affects me more because I'm a wimp. I feel like an imposter if I try to say I have chronic pain when there are people who really suffer from it. How much of my life does my pain have to effect for me to be comfortable defining it as chronic pain?

Looking for advice on working with a nutritionist

Does anyone work with a nutritionist? Been listening to the Bendy Bodies podcast and heard one episode with a nutritionist so now I'm wondering if that would be helpful for me. just wondering what kind of benefit you got from it if you did at all. I'm already dairy free/gluten free/sugar free.

Finally Got a Diagnosis for My Chronic Symptoms!

After 8 years of bad symptoms and 21 years (my lifespan) of symptoms in general, I have finally got a diagnosis. Hypermobile Ehlers-Danlos Syndrome! Treating myself to a glass of prosecco!

Strategies for Knitting/Crocheting with Hypermobility Syndrome

Those who live with hypermobility syndrome. I have a bit of a strange question to ask. If you knit or crochet what strategies do use when your hand cramps up?

Managing Hypermobile Ehlers Danlos Syndrome: Tips and Resources

Hello, I have just been diagnosed with hypermobile Ehlers danlos syndrome, and my doctor suggested I download this app. Does anyone have any good resources or tips on how to start managing this? Thank you 🥰

Seeking Answers for My Undiagnosed Condition

hello, maybe I'd be better off on Reddit but I thought giving this a shot was worth it. I'm more or less here to figure out what the duck is wrong with me, because apparently the one diagnosis I do have (JHS/joint hyper mobility syndrome) technically hasn't existed since 2017. I was told I didn't qualify for hEDS because my "skin isn't soft enough" my ANA (antinuclear antibody test) came back irregular my rhumetolgist ran a basic test saying there was nothing wrong like rheumatoid arthritis, or lupus. I then saw an infectious disease specialist who confirmed it wasn't due to anything parasitic. I'm more or less looking for people who relate to my experience and may have more answers than myself :)

Clavicle Popping: Normal or Concerning?

My clavicle pops A LOT (like a handful of times every day), and I have suspected EDS. It feels sore and painful when it happens. Is this normal or should I be concerned?

Excruciating Shoulder Pain After Physical Therapy

Did physical therapy one time and I am still in excruciating pain in my shoulder almost a week later. It feels like it’s actually getting worse. And I’ve tried ibuprofen, creams, hot/cold, nothing helps dull the pain… should I go to the hospital?