I was just diagnosed with an unspecified hypermobility condition, and I'm wondering what my next steps are. my dr has me starting pt soon, but I'm still floundering a bit.
Can I get a wheelchair for my hypermobility? They're not sure yet if I have HEDS or just HSD but I need physical therapy either way which I have not started yet. I'm finding it very difficult to do longer journeys at the moment meaning I am missing out on a lot of my life when I could be going on days out with my family and friends. I am okay for short distances. Could probably use a walking stick to help one of my legs that is extremely painful some days but that doesn't concern me too much. I understand I may not need it after physical therapy however just right now I'm missing out of a lot because I can't do the walking to get there you know? People keep telling me if I use any mobility aids I'll just deteriorate which is a bit scary but on the other hand... I can't do the things I want to do right now which is really upsetting. I'm not sure what to do. I've seem others use mobility aids for their HSD and HEDS but everyone seems to be making me feel bad about even asking if I could too.
hi, so i recently got diagnosed with hypermobility by a physiatrist; they also have referred me to a geneticist to see if i have ehlers danlos syndrome; it’s great news to be a step ahead with my treatment, but at the same time i can’t help but feel a little lost as to where to go from here. id like more support in understanding this part of my condition. is anyone aware of any communities/support groups for hypermobility?
Can being hypermobile cause me to hurt my ankle without even doing anything? I was sitting regularly for abt 45 minutes, but then my ankle randomly popped (I didn't put any pressure on it or anything, I just turned my body slightly). I tried to walk, but I couldn't without limping. This happens quite often. It didn't stop hurting until I popped it again. Could this indicate I have hypermobility? I'm also really "flexible" but my knees and hip "pop" all the time and I can bend my fingers all 90° backwards. I want to know if it's worth looking into since healthcare is expensive 🥲 I already wear leg braces to help with it, I just wasn't wearing them today.
does anyone have advice on sleeping positions cos I'm really struggling on being comfortable every position hurts.
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?
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?
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
Esophagitis-Gastroesophageal Reflux Disease (GERD)
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?
my hip has been in so much pain for a few days and I don't know how to help
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)
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?
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
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.
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.
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?
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.
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!
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?
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 🥰
The significance of online communities lies in the emotional support and understanding they provide, empowering patients to express their concerns, fears, and triumphs without fear of judgment. Such platforms foster a sense of belonging and camaraderie, helping patients navigate the complexities of their conditions and treatment options.
Anxiety (Including GAD)