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I know this is an oddly specific forum post but I was recently diagnosed with hEDS and was wondering if anyone else suffers from it and has any advice. :) |
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Not diagnosed, but highly suspected to have it by two people who do have it and...Well, my inclination to have various joints dislocate or subluxate. Heatpads, topical pain meds, and various nsaid pain relievers can all help. Boyfriend uses the, ahem, "green stuff" to help with pain/inflammation. A lot of the pain control methods are an individual type thing, so it'll be a case of figuring out what works best for you. Exercise to help keep up muscles around problem joints can help, too. I definitely recommend learning to read barometric pressure since pressure drop from storms/weather patterns can definitely cause pain. |
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I dislocate, hyperextend, strain, pull, etc. CONSTANTLY. I've been considering using the "green stuff" since it is legal here. I've noticed it definitely helps the pain. Lately, it feels like my joints have very rapidly declined. Up until a few months ago, my hips were "fine" but now I will dislocate them three times in one day. My arches have been collapsing way more than normal too. Advil and Tylenol don't seem to be helping nearly as much anymore. I live at the base of the Rockies so barometric pressure change is VERY common and my joints always let me know when a storm is approaching. “It's like I have ESPN or something. My breasts can always tell when it's going to rain. Well… they can tell when it's raining. '' XD I constantly feel like I need to go to a chiropractor but I know it won't help. |
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Sounds familiar. I sat wrong yesterday and subluxated my hip. You might try to see if your doctor will write you a script for prescription strength nsaids. I have one for naproxen and it honestly helps. Otherwise? Having a good computer chair and mattress can both really help out. |
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i dont have hEDS but ive seen some people on TikTok that have service/assistance dogs for them! maybe you & your LMHP (licensed medical helth professional) can talk about it and see if maybe a(n) service/assistance dog is right for you! this article is about a service dog handler with hEDS and explains about what the dog does and helps with! |
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TopGun Elites said:
i dont have hEDS but ive seen some people on TikTok that have service/assistance dogs for them! maybe you & your LMHP (licensed medical helth professional) can talk about it and see if maybe a(n) service/assistance dog is right for you! this article is about a service dog handler with hEDS and explains about what the dog does and helps with!
It's worth noting that hEDS is a wide spectrum of symptoms with varying degrees of severity. Not everyone is as severe as the person in the article. Taking myself as an example, dislocations/subluxations are fairly uncommon and can generally be prevented if I actually exercise (need to keep up with that lul) and POTs which I can manage by taking electrolytes/maintaining adequate sodium in my diet. |
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Seems that they might have isolated a gene contributing to hEDS, which potentially opens up the idea of a genetic test, opposed to a list of symptoms: CNN article |
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