Doctor denies EDS pain, need support from EDS community

oh sweetheart I'm so sorry. I have 3 kiddos 25, 19, 3 and my middle is having issues already, he's 20 in July. I hope 2God I don't give my children something like this. I'm not even diagnosed yet cuz finding a rheumatologist over here has been a challenge. 3 years I been trying. I have all the symptoms and they make compete sense as 2 why I Wud have all the issues I do. I just don't have any dislocation. But it feels like they will constantly. I have no cartridge in my joints and I'm super duper flexible. Have spurs that have grown in all my joints head 2 toe. I will pray for u and ur mom. I'm sure mentally it's destroying her cuz I know it is me. Mom NEVER wants her kids suffering like she does. But at least u have the knowledge and tools 2 have a better outcome.

sending love to you and your mum

absolutely agree with you there.

keep fighting the good fight! If possible, bring someone to an appointment with you! Even if the person doesn't speak, it could discourage the Dr from minimizing you, your symptoms, or your experience in general. 😉🙏🏽💪🏽🫶🏽🫡

Oh, and my associated POTS causes blood pooling in the legs which also is painful

thx Hun. It's been fun trying 2 advocate myself w these Drs. They act like ur crazy. Been w my neuro and pain management, same office, for a year and half at least. When I brought up EDS he almost laughed at me and asked " why do u think u have that?" So I started rattling off all the matching symptoms, severe flexibility my whole life, even w all my joint and back issues I can touch floor w flattened palms, my hands I can bend in not so normal ways, major joint issues, always a new spot that is sore and just so happens 2b in the joint EVERYTIME or a new spur pooping up, I swear I have like 10 spurs just in my hands and feet. U can feel them. He shrugged it off and said " I can do all that stuff and I don't have EDS" oh really let's see!! Nope he didn't wanna do that. I can put both feet behind my head, been doing it my whole life. Always have rashes and skin issues , I have loose soft skin. Then the hypermobility of the bladder and PT said some in my back, can't recall if it was vertebrae or disc.i do have issues w facet joints as well. My whole back is screwed up and never did anything 2 cause it , was very active and healthy. The only symptom I don't get is joints popping out. I feel like my hip will at times and in my 30s I had issues w my knees popping out but that stopped. I break toes very easily. Then I had 2 argue w him about EDS causing pain, and I had NOTHING in front of me at that time 2 banter with. I told him I cud bring him real life proof from real ppl w real diagnosed EDS. I sent some comments thru the portal 2 him. Next thing I know the arnp is telling me he's agreed 2 try a genealogist. But it's still a wait and see. Mayo is the only place around that has 1 and they only take so many Medicaid patients a year. And I'm sure there's a waiting list. I just want 2 find out if I have it, that's all. That's what healthcare is about crossing crap off the list when u have so many problems and they can't figure out why. A Fibro diagnosis is just not sitting right w me.

the symptoms I got were overactive bladder. Nothing else, it was basically a surprise find. The 1st time I was evaluated by a arnp they said I had a herniated bladder. They lost all my info and I demanded a Dr. He evaluated and said no it's not herniated. When he touches the bladder it falls back into place quickly. Herniation Wud stay in place.

get checked for IC more likely common with EDS

they diagnosed me w Fibro and CFS, but the degeneration of my spine and discs and bladder hypermobility plus all the osteoarthritis and spurs all over my body lead me 2 believe it's not just that. I'm only 42. My body looks 80. Gotta b a reason.

did you ever take the fibromyalgia test? Because I have both

yes!! Just received referral for geneticist. After hearing from my PT how very flexible I am and have hypermobile joints and bladder. Might take awhile 2 get in tho. I just posted a new post. Been like this my whole life now all my joints and back are super bad, cud have been avoided w proper care. I posted this 2 show my neuro that he was wrong. Sent into the portal. Have an apt w him December so I'll bring him the rest of comments.

and then whenever they complain about the pain, we can all gang up on them and say that EDS doesn't cause pain. 😈

how do I know if it's bladder spasms? I randomly have pain in right side 2 the point I can't walk, thought it was UTI several times and went 2ER and it's not, keep telling me it's probably my joints. But I know my hip and back pain well. This does not feel like that. Feels like my bladder!! Also worse in morning b4 I pee, still hurts after but less pressure.