hypermobility

I’m not sure what my next move is. I’ve had chronic pain since I was a kid, the worst of which being spinal (back, neck, shoulder, pelvis). The last year and some change my wrists and hands. Sometimes other joints or body parts. I’ve always been “double jointed” in several places and flexible. I have a spinal curve that’s not technically scoliosis, but it abnormal. No doctor has ever given me a definitive answer about why everything hurts. But physical therapists have. Massage therapists have. Acupuncturists have. And the consensus among the ‘whole body’ type medical professionals is that I’m hyper mobile. So I get a referral to a rheumatologist - he asks a few questions, does a handful of mobility tests (not the full Beighton scale) and writes in my chart note “not true hyper mobility” and tells me it’s a mechanical issue with my posture. I was diagnosed with carpal tunnel syndrome (with no physical testing) about a year ago. Just yesterday, a PT specialized in hand and arm conditions did carpal tunnel tests and hyper mobile tests and eluded to the fact that carpal tunnel is sometimes just the easiest dx for doctors to give. The tests she did for carpal tunnel were negative. The tests she did to see if I was hypemrobile were positive. She is about the fifth PT I’ve had in the last decade tell me I’m be hyper mobile. I believe 5 PTs over the MDs that didn’t even see me move my body. So now the question is… what do I do about it? Tell my PCP I want a diagnosis? Switch to yet another PCP? See a different rheumatologist? I’ve had pain flares throughout my life including several that made me quit my degree job. So what do I have to do to get the diagnosis that gets me yeh treatment that gets me my life back. #Hypermobility #Misdiagnosis #PhysicalTherapy #ChronicPain

I seem to and am wondering if it’s a typical symptom of hypermobility/EDS/connective tissue disorders

#MightyTogether #Hypermobility #EhlersDanlosSyndrome

I am so frustrated and have searched online to no avail as to how to deal with this but my hypermobility in my hands and wrists is causing so many issues with things I want to do (cooking, playing instruments and any other fine motor activities).

What should I be doing? I can't find any devices or anything that seems to help, there doesn't seem to be a way to remedy this and I don't want to give up more things I love to Chronic health problems and I feel like I'm almost there and I can't stand to lose something else--please someone help me!

#HypermobilitySyndrome #EhlersDanlosSyndrome #Hypermobility #handhypermobility #ChronicPain #JointHypermobilitySyndrome #Jointpain #HEDS

I think I have craniocervical instability. I'll be going for an MRI soon. I had a CT scan in the ER Monday. I went because I was in so much pain! The findings show bone spurs, arthritis and nerve compression and that was only in my C1 through C6 vertebrae! 🤣

Some days, it hurts to sit, stand, even lie down. Some days, I cry from the pain, other times I cry in frustration. I am slowly having to learn my limitations.

What helps to relieve your pain?#EhlersDanlosSyndrome #POTS #Fibromyalgia #Arthritis #Hypermobility

I have ME/CFS, erythromelalgia, and what I strongly suspect is hEDS. With that being said, my knees, mostly the right one, subluxate almost daily, and even when it doesn’t come out I sometimes have to “crack it” for lack of better word, in which I straighten my knee as much as it’ll go and it clicks and feels better, for it to feel right. Often when having my legs bent (I.e. sitting on my knees) is when it subluxates. My question is how rare are knee subluxations actually? When I look it up it only shows patella (kneecaps) subluxations and said that real knee ones are quite rare. I’m uncertain because my kneecap looks normal when I know my knee is out partially. To click it back in, I have to straighten it for it to pop back in, and sometimes push it back and like hyperextend it to get it back in fully.

My question is how do I know if it’s my kneecap or my knee, and does anyone have advice on how I can keep it in the freaking socket. Thank you!! 🫶🫶🫶
#Hypermobility #EhlersDanlosSyndrome #MyalgicEncephalomyelitis #Erythromelalgia

I have hEDS and have many joints that sublux. The worst are my collarbones, subluxing many, many times a day. They dont hurt, but it is uncomfortable and they come out basically whenever i put my arms above horizontal with my shoulders. I always hear about knees and shoulders subluxing, but not much about collarbones. I have tried a lot of physio but my physio has been finding it hand to target the area of muscle that is the problem. If anyone has any experience with collarbone subluxing or any tips and tricks, it would be very appreciated!!

#EhlersDanlosSyndrome #Hypermobility #collarbone #Subluxations

Second day of this week. And I'm in emergency . Thanks #EhlersDanlosSyndrome , #Hypermobility .
But I discover in this way, codeine helps me with chronic pain and pain cause of injury.