u/Tim_Tam_Tommyn

Image 1 — Your toughts before I pay for private hc
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Your toughts before I pay for private hc

I'm so sorry you guys must get posts like this everyday it has to get so tiring but I want tge opinion of educated people on the matter before I have to pay from private because my primary care doctor thinks I'm dehydrated

Hi, I'm 18 and have had knee pains everyday since I was like 4. It started as knee pain on ling walks and everynight when I laid in bed. Now if I stand for more then 10 minutes at a time my knees, ankles, hips and lower back hurt, then if I don't sit down it spreads to my shoulders. Same goes if I sit wrong but I'll also get elbow pain from that. When swimming I feel my elbow wanting to fold backward from tge water resistence.

What has been done- I have been seeing a podiatrician since I was like 7-8, I wore hard sole things? Prostesis? I'm so sorry english is not my first language. At 16-17 he announced he could not help me further, he tought it was neuromuscular because "it's like I'm using too much muscle to walk, like my legs are on overdrive all the time. It makes my muscles stiff and they pull on my rotula, which would explain the knee pain and from there everything my ankles, hips and lowerback can't work properly" but that doesn't explain my shoulders or elbows. Now why standing hurts worse then walking. He refered me to a pt whom I've been seeing for over a year now. It helped at first but now I'm better then I was withbut getting better then that, everything still hurts. My knees have been x-ray'ed, they rulled out juvenile arthritis, and we have done tones of bloodwork and everything is normal. I think one element was strangely raised but not beyound fair range and can't remember what it was, my doc won't look into it further since it doesn't worry him.

Family history- Two older family members where diagnosed with fibromyalgia years ago, which I suspect may have been a misdiagnosis of EDS since it used to be misdiagnosed as fibro a lot. Everyone on my mom's side has mysterious hip problems amd is sensitive to dislocations. My mom also has shoulder problems. This is also the side with two diagmosed relatives. My cousin on that side can pop his shoulderblades out, and my younger sister can fold her back over herself so her toes reach below her chin. She used to sleep on her ass and forehead, with her back folded over herself. Creeped my mom out. She also keeps dislocating every part of her body.

Latest appointment with my primary care doctor- When I brought up that I suspect I may have hEDS, he first of all asked why I tought I was sick as if someone fainting for no appearant reason, having morning sickness for no appearant reason and having daily knee pain since I was 6 was not enough of a sign smt is wrong. Then said I'm dehydrated and need to drink more water and that we'd talk again after that. Then he had to look up what hEDS was, and then he did not do the beighton test before dismissing me. He did his own little test where he palpated my tendons or ligaments idk with his thumb and determined I was not hypermobile.

I cannot touch the ground with my palms, last time I tried I could do it with my knuckles. My pinky does not fold back 90°. Attached are some pictures of my joints in the most extended position I could get them in but I'm sore this morning so my flexibility is slightly impaired.

u/Tim_Tam_Tommyn — 3 days ago

Midline dermatitis

Hello. A horse at the barn when I work has midline dermatitis. I doubt it's noseeum allergy since he did not react this way in summer before 2-3 years ago, and he is now 7. So I've deduced it was caused by threadworms. I know mature threadworms can't be eliminated, but on top of ultra frequent deworming to get rid of the larvae and at least stop the cycle so he may feel better 10-20 years from now (crying? No I'm not crying), what can be done? Isn't there like, some kinda holistic deworming methid that can be used on top? Or some plant that hasn't been studied enough yet tonprove it works, but annecdotaly, it sorta works? He has been given a steroid treatment in the past, I think. I can't remember the name but it was bright blue. Then a second one, white. And another blue one, but this time it didn't stain his tongue. Our vet is out of ideas now.

And what topic ointment do you like best? He scratches himself raw, he spends all summer with open wounds on his face and belly, and rubs out his entire mane and the top of his tail, to the point there's only a layer of crust left. . As for ointments, we have used sudocreme (the white one with lots of zinc that's good for diaper chaffing in babies), green clay, nitrofurazone, something with lots of aloevera... applying green clay 2x a day has helped the most I think, since the barrier it created lasted until the next application, but it's annoying to work with and did not actualy help with healing, it just prevented a bit of damage. But if there's any hay on the ground he'll rub it off on it immediatly! I don't think it actually offers much relief. So if anyone has another suggestion that may work as well or better and be easier to apply...

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u/Tim_Tam_Tommyn — 5 days ago

Hi everyone!

I'd definitly appreciate advice or even encouragement or smt, but this is also half just venting.

It all started yesterday. I was feeling very relapse-y but more in a "ah I wish I got worse so people would see how much I' struggling" way then actualy needing to cope. And since I've been trying to replace sh with different, not much healthier coping mechanisms, ie drinking, nicotine pouches or smoking, that's what I did. And generaly I have a rule, of max 1 consomation per day, and to alternate between the tree, and to let one full week go between each consomation of either substance. But for some reason I've not yet caught, yesterday I forgot that rule and smoked, then drank 2 hrs later, which at least ig they're spaced out, but half my family are alcoholic and half smoke, so I'm usualy somewhat careful. And then that night, I still ended up relapsing, except I was at it for 1hr straight. I am CHOPPED. This morning their was a bug in my bus system mobile app and I didn't get notified of a change in my bus' parcour, it did not stop near my house, I waited 30 minutes in the pouring rain. Ended up getting on an hour late, soaked through my wind breaker/semi permeable vest, late to a gym class I didn't want to go to anyways, but had to go to or else the teacher would fail me because she set the max absences at TWO classes. Even more frustrated knowing I had all along planned to not go because it was team work scheduled, but the week just before that I realised I had forgotten my gym pants, thus did not participate in the end, since I'd've an absence anyway for not proper equipment. During gym class, peak dysphoria. We had to do jumpy exercises and it's technicaly a dance room, meaning mirrors on every wall and no choice but to look at my bouncing chest, blink back tears and pray nobody notices either. Then, spent the whole day feeling super anxious for wtv reason?? No specific anxious thoughs, just... you know the knot forming in your stomach when you feel guilty and you wish the person you wronged would murder you so you'd be quit? Or more like a sphere of emptyness taking up place actualy. All. Day. I want to go at it again so bad. But I don't have any supplies left to bandage with in case I go too deep. Used it all up this morning making sure nothing reopened and bled through during pe. This sucksssssss

And now that I've written it out and tought about it, I've been feeling this knot for a few days already now. I tried to shower without my phone to keep me too busy to notice I'm showering, for the first time in idk how long, thinking I could just focus on the warm water instead and I'd be fine. I was not, in fact, fine. I hate this I hate it. Also I think I'm actualy feeling fearful, not anxious. But not fear in the heart that's like, oh watching a horror movie or riding a roller coaster. Fear in the stomach that's like, going home after school knowing your parent is back from work and they texted you a picture of things they found in your wardrobe they disagree with. And knowing they're about to give you the worst most deafening yelling sesh of your life, make 10 different, unrelated and not interconnected treaths, and in the process make sure to humiliate you in front of all your siblings, who'll then be mad at you for making said parent mad because now they need to stay in their room and not make a sound or else they'll also get yelled at and it's not fair to them. And now a new knot forms in your stomach because you feel guilty for ruining their day one more time.

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u/Tim_Tam_Tommyn — 19 days ago