u/KnickKnackPlattyJack

So earlier last week i posted about how frustrated i was with my pcp. She diagnosed me with hypermobile arthralgia, which i felt was wrong because its a symptom of HEDS/HSD. She did the evaluation for it, including the beighton score, which she failed me at because i got a 4/9.

The problem i have with that is that she didnt test me correctly. At least not from what ive seen in other specialist and doctor evaluations. Then, because i dont have any hernias or prolapses, and the giant papule thing i have on me feet "dont count" i failed feature A according to her. My skin isnt very stretchy either, but i bruise pretty easily and get scratches from the dumbest things. There is also the striae marks on my hips that ive had for ages, and the sunken in scars on my legs and forehead (not achne related) and a high roof in my mouth. The dr dentist also had a hard time with my wisdom teeth as they were soft tissues impacted, and growing sideways from what i was told.

Not only did she not test me righ, but she didnt complete the evaluation as its written. She should have asked about my history, (the five questions for if you miss the cut off by 1 point). She told me i failed to meet all the criteria, but didnt tell me which criteria i did and didnt meet for feature A. Nor did she ask much a about my family history. (No one had been diagnosed with HSD/HEDS, be we've all been told by drs that were double jointed) but the other symptoms i have dont count towards the diagnostic critia.

It doesnt help that the rheumatologist i saw told me kn person that it was indeed HSD/HEDS, but didnt write that in the clinical notes. She wrote hypermobile arthralgia instead. So the pcp dismissed me.

I was able to message my rheumatologist and she did get back to me, saying she would make an adendum to the notes and resend them to my clinic. But her clinic wont let her make an official diagnosis for some reason, and for uniformity among her 9 other peers they use hypermobile arthralgia. I dont understand why when HSD/HEDS is not quite the same as hypermobile arthralgia. (The later being a symptom of the former) she also said something along the lines of "you dont need a diagnosis unless you want to get disability" in my visit at the rheumatologist clinic. During the phone call she said something about it not qualifying for disability or something.

To be honest, i dont really care about the disability aspect. But im pretty sure my mother had it, and my brother likely does as well, (but he has been having a rough go of things as well) so knowing my family history, and having things documented for my children is important to me. I also want to get tools so i can be functional to care for my children, and to be taken seriously by my pcp. And my obgyn should i have anymore kids. I was told my by obgyn that round ligament pain is normal, but she didnt under that my hips were even worse than normal and my sciatic nerve would slip into the joint when it moved and get stuck there. (Ive been told that cant happen, but the lighting shooting pain says otherwise) and i dont think bellyband are helpful for that problem.

Also recently i injured my knee by standing. I was sitting, i stood up, and my knee rebelled. Pop snap and pain. I ended up going to the er because my foot went numb. Thankfully they were really nice, and didn't dismiss me. They did referral me to a sports med therapy, but they do exercise based therapy, and i felt that would be unwise.

The good (i guess) news is that at the end of the month, i have an apt with another pcp for a second opinion. Ive already sent him a message about my situation, and called the risk management of my clinic to express my concerns about the whole thing. And about the other other dr who told me i couldn't have HEDS because its so rare. (Lol, EDS is less comon, but HEDS is under diagnosed, or called fibromialga from my understanding). I hope this new pcp I'm going to visit with will take me seriously, especially with the amendment to the clinical notes from the rheumatologist. I have also requested genetic testing for the other EDS types just to rule them out.

My ANA and rheumatoloid arthritis tests came back normal, (my labs are always close enough to normal that the drs arent concerned) and i dont have carpel tunnel. So thats also good.

So, I did a post recently and deleted it because I couldn't change the title. Sorry for those who were following that post. I just wanted to rant and maybe get some insight on how others have gotten diagnosed. (Also its a long post. Sorry)

Last week I went to my PCP for an evaluation for HEDS/HSD. Basically the only difference between the two is the diagnostic critia for HEDS is more strict than HSD. I have been dealing with Basically all the symptoms that come with the two, but because I only received a 4/9 on the Beighton score i failed to meet the criteria for both conditions. The rheumatologist i saw said that i do have HSD at least, but i dont need a diagnosis unless i want to get onto disability. But if i dont have a diagnosis and my children have it, it makes things harder for them. Also most of the doctors ive had dont take me seriously amd basically gaslight me into being fine.

My dr clinic notes also say that I don't have 5 of the critia for feature A, but doesnt specify what I did and didn't have. I do have the stretch marks, a high roof of mouth, papules on my feet (one is very big on each foot but the dr decided she couldnt determine if it met the criteria or not so i dont think she counted it) my skin is fairly soft and i get cuts pretty easily. As well as always having bruises everywhere. I also have a few of the atrophic scars. But my skin isnt stretchy, and the last cardiologist i saw said my heart looked fine. At least enough that theres nothing to worry about. I dont have any pelvic floor prolapse or hernias, but my bladder doesnt work quite right. And i dont think she measured my armspan.

I dont get complete dislocations, but i know when my joints are misaligned. They slide around regularly. My hips, knees, wrists and ankles are the worse ones. Pregnancy was really bad as my si joints were always popping and sliding, and my sciatic nerve would get caught in the joint. I dont mean pinched, i mean it would get stuck. I couldn't stand, or move for hours at a time without being in excruciating pain.

A recent mri showed that i have a bulging disk thats misaligned with an anul fissure. I was told its super common in adults. But my entire back will pop and crunch like when you step on a bag of chips. This is every time i move while laying down.

I dont eat well, because some days ill be too bloated to feel hungry, or my body doesnt process the food and it goes through my intestines more quickly and I have very loose stools. My guts cramp a lot amd ive cut out gluten to see if that helps.

Dentistry is also a nightmare. Brushing my teeth, even with the softest brush i can find, will still leave my gums bleeding and no matter how much i floss i still bleed. Local numbing works differently on me ad well. Either i wont numb all the way, or the numbing wears off really quickly. One dentist gave me 6 doses if numbing and i still felt everything.

I also suffer migraines. Vestibular, hemipleigic, ocipital. It makes my eyes do weird things. Like, i know they move, but i cant focus on things and it feels like they dont want to obey me. And my neck is always sore (an mri showed my right brain tonsil is lower than the left but its not by very much)

I get dizzy randomly, and have palpitations. The cardiologist had me speed walk on a treadmill and since things were basically normal they said i dont have POTS. There was no table tilt test.

My body temperature had always been a bit on the low side, being between 96 and 97 Fahrenheit, and i dont regulate temperature well. I'll be freezing cold in a room thats 75, and boiling hot in a room thats 65. My toes are basically always cold even on hot days.

Im always tired, even after getting 8 hours of continuous sleep and tire very quickly. I love to craft, but i cant do very much or i hurt. 1 hour of sewing leaves my body stiff and my hips really hurt. My hands are always sore when i wake up. Cleaning is worse.

There's also the pulling feeling i get in my chest that makes breathing hard. Its not anxiety. Its like my sternum is being pulled and stretched like a rubber band. Its not my lungs, but the tissues attached to my chest.

And i was pretty flexible as a kid. Always doing party tricks with my joints, my feet are both flat and high arched somehow. I was always rolling my ankles or tripping on things (even a ladybug. Yes that actually happened) im not as bendy as i used to be. Which i find mildly sad, but i also understand my body is trying to protect what stability it has left.

I had nerve testing done for carpel tunnel and everything came back normal, and will be doing an EEG soon.

My family has a history of hypermobility, but none of us were ever diagnosed with anything. I suspect my mother had it to as we are very much alike.

I requested genetic testing for all the types of EDS to rule them out. I am waiting for the referral to go through. But getting my pcp to even agree to evaluate me was rough. She kept pushing back, telling me why she can't. Even though she can. I should be grateful that she acknowledged my body is mad at me, but diagnosing me with a symptom of HEDS/HSD feels like an insult to everything else i've been going through for the last 20 ish years. I have more than just joint pain.

All my labs have been close enough to normal that its not considered concerning, and my ANA and rheumatoid genetics tests came back normal.

I keep getting told to seek a second opinion, and I want to, but my insurance is very picky about what it covers, especially without a referral. There are 5 specialist who work with HEDS/HSD in my state and the closes is several hours away. The neurologist sugested i see an orthopedics specialist, or look into fibromialga, but i feel like that one is over diagnosed because doctors dont want to look further. And i was told by another doctor in the same clinic i go to that because EDS is rare i can't have it.

I just want answers, and doors opened so i can get the right care. I tried PT before and it wasnt specialized for hypermobile joints, but the dr thought my kneecap was out of place because my muscles were pulling it out. The PT made it worse. All of these symptoms have been discussed with my pcp. I haven't gone to any drs for the partial joint sublaxations or whatever the medical term is, because i dont want to become another one of the "just in here for meds, and doesnt matter" people. I want to know what's going on, not just for me, but for my children as well.

Hey all, I've been struggling for years (since I was 7ish, I'm now 32) with my joints hurting and partially dislocating cracking and sliding in and out of place, migraines, heart palpitations, gi issues, my eyes not feeling right, local numbing not working even after 6 injections, dizzy spells, being exhausted even after sleeping a full night, bleeding gums even with insanely soft toothbrushes (its not a matter of brushing more to make my gums stronger nothing helps). My jaw also very nearly completely disclocates every time I yawn, or open too wide. I can't stand for more than a couple (literally 2) of hours without feeling the tendons popping out of the bottom of my feet, and its easily a level 10 pain. Sewing for even an hour will leave my hips in agony and I can't walk. I cant eat well. Either I get full super fast and say full all day (ill eat maybe 1 full meal and thats it) or ill be ravenous and have diarrhea for days after. This is a daily thing of one or the other. My skin gets super itchy for no reason, and my sternum will burn like its been stretched and pulled (no its not anxiety, its a physical pulling and burning on my actual sternum. Never my lungs but I do get short of breath) I'll be freezing cold when it's 72 degrees inside, and boiling hot when its 65 degrees inside with almost no in-between. I've always had funny bumps on my heels, stretchmarks that aren't pregnancy or weight gain related. Plus a couple scars that are sunken in. I get hemipleigic migraines, as well as several other kinds of migraines and headaches. I literally cant exercise without being bedridden the next day, yoga makes everything worse, and I've tried regular physical therapy. It just made my joints hurt more. I used to be super flexible as a kid, and was aways rolling my ankles or super accident prone things happened. I used to be able to put both feet behind my head and other little "party" tricks like walking on the knuckles of my feet. My feet are both flat and high arched (idk for sure how that works but a foot doctor told me I can't wear heeled shoes because of it). My pcp sent me to a rheumatologist who said I basically have HSD (hypermobile spectrum disorder) but they arent allowed to make any diagnoses because their clinic policy wont let them. They said that "I dont need a diagnosis unless I want to get on disability" So I went back to my pcp. I curreny only scored a 4/9 for the beighton score, and so she won't diagnose me with HSD. Only hypermobile arthralgia. I want clarity and not one person saying something, and the other saying something else. I get that the arthralgia is basically treated the same as HSD as far as pain management, but the point is that my body is more than just painful joints. Its systemic and I feel frustrated because 1 test decided that its just hurting joints. And that test doesnt even cover back, hips, neck, jaw and other joints. I'm tired of being bounced around and being told various things about the same problem. I live in California (unfortunately) and there are 5 specialists in the state who work with conditions like mine, the closest is several hours away and I don't know if my insurance will cover it even if I were able to get in to one. My spouse is military and I've been encouraged to get onto the EMFP program, but I dont think hurty joints is enough, even though I'm barely functioning. I have 3 children and I need to be able to take care of them as well as myself and household. I HATE going to the dr because I’m gaslit and not taken seriously, and any trip to ER the drs dont treat me like a person because I don't have a good diagnosis. Even when my pain levels are 10 or more. I feel so invalidated and kind of humiliated.