Dealing with Joint Pain and Hypermobile Joints

ok so I started PT this week and I heard the word hypermobile again. my joints in my lower back. said 1 is hypermobile and others are hypo. I know I have DDD and authritis everywhere and stenosis. I don't have issues w joints popping out but always swollen. plus the hypermobile bladder. still Drs aren't seeing all the symptoms and associating. my son now is having malaise and migraine and back issues. he has stretch marks all over and is only 19. he can pop his elbows out. I'm just double jointed, when I'm not swollen and in pain. how did u get anyone 2 listen? how did u get tested? who did u see? even if it's not that something is up. but way 2 many similarities. don't want my son 2 go thru what I have for 20yrs. I'm still not properly diagnosed. only saying fibromyalgia. I just want 2 not b in so much pain daily. my joints are always on 🔥!!

Your answer

J4yJ4y

1y ago

Finding a rheumatologist that is well-versed in EDS is imperative. I was lucky enough to have a PCP that recognized and diagnosed me with hEDS (she is a specialist in EDS and has it herself) and she also referred me to a rheumatologist that she knew was educated in EDS treatment and the comorbidities of this disease. Autoimmune conditions are commonly seen in those of us with EDS. I am now suspected to have developed Sjogren's after a xovid infection (and developing long covid) and am now working on further treatment for that. Sadly, I have struck out with 3 neurologists/neurosurgeons who were totally unwilling to take me seriously. I am going to a geneticist in a couple of months that specializes in EDS. If you check out the EDS international website, they have lists of providers that are educated in our condition..maybe you can find some near you. You're an amazing mama for wanting to help your son and yourself. I'm not sure where you are located, but I hope you are able to find some quality providers that take you and your son seriously. You most definitely deserve it!

Jlync80

1y ago

thx so much I'm in Florida, Volusia county. Horrible horrible when it comes 2 insurance and specialty Drs. My son unfortunately is in Ozark Missouri which is way worse, out in bfe.

Future_Dr._Zebra

1y ago

I got diagnosed by a rheumatologist! Ask your PCP for a referral and don’t be afraid to share your suspicions with both. Sending you and your son good wishes on your healing journey 💓

Jlync80

1y ago

I had 1 of those and he dismissed me quickly. Been looking for another, we don't have any in my area so been tough. He wouldn't even treat me for fibro. They thought it was autoimmune but after bloodwork they said fibro and shut me down. Sent me back 2 my neurologist. Now waiting for geneticist.

scarlet138

1y ago

I completely agree, I wish I didn't have so much pain as well. I first got diagnosed when an orthopedic doctor noticed how flexible my ankle was. I still haven't seen a specialist about it. I don't even know if there are any.

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