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Cybele

896d

Hi, I have classic-type EDS with hypermobility in my joints. This is a recent diagnosis that has lifted some weight off of me from years of doctors telling me I’m fine since EDS has to be specifically tested for. However now that I know why I’m 20 years old with the pain of a 70 year old, I’m focusing more on symptom management. I’ve tried a lot of things, which I will list as much as I can remember: -Massage (many different types- deep tissue, trigger point, hot stone..) -acupuncture & cupping -chiropractor (which I did for several years before realizes that it only made inflammation worse) -IV fluids (but they are expensive and my insurance wouldn’t cover them, so I don’t truly know if they would’ve worked. If someone has experience and recommends them- let me know!) -saunas, infrared, cyrofreeze -physical therapy (which I actively do) -exercise and yoga) also actively do. I exercise daily, it distracts me from pain) -pain medication… a lot. To name a few- Celebrex, hydrocodone, amitriptyline, oxcarbazepine, cyclobenzaprine, meloxicam, tramadol, tizanidine, nabumetone.. these are just the ones I can think of… …when it comes to pain meds, i prefer to only take things as needed, like if I’m screaming in pain. As someone who deals with chronic fatigue, taking them wastes several days feeling like crap. I take a butt ton of vitamins and supplements too: -Omega 3 -L-Glutamine -MSM -Carnityl -Iodine& Tyrosine -Rhodiola -Calcium -Glucosamine Chondroitin -Meriva SF -Collagen -magnesium -B12 And multi vitamins. For those who read this whole thing, haha thank you. I am truly desperate. Any advice, guidance, anything…. I would appreciate so much. Thank you.

Top reply
    • Elisa

      894d

      Well is sounds like you have tried a lot of different things. If you are still taking Cyclobenzaprine, ask if it actually helps because it's not a pain med it's a muscle relaxant, which can make your joints looser. I didn't see braces on the list, so I'd recommend getting flexible sports braces like the ones bauerfeind sells for your worst joints. I find chiropractic helps but only if you have a skilled chiro who uses low impact techniques, which is key.

    • Elisa

      894d

      Other thing, good shoes. They keep everything in alignment which helps with back issues

    • Elisa

      894d

      Idk if a good chiro would help you though. I use rolled up towels to stretch the parts of my back and shoulders that get tight and start to pull things wrong. I also found that a good desk and chair with proper ergonomics really helps along with a good mouse. Did the supplements help with the fatigue? I haven't really tried them yet. Sometimes it's stupid little things like having a proper sharp knife so that cutting veggies is easier, or taking smaller loads of laundry down the stairs. I'm getting a bite guard for my TMJ, I'll update when that happens, if it works. What excersizes do you do? I struggle to get the energy to get up and do anything so advice in that area would be helpful to me.

    • Elisa

      894d

      Well is sounds like you have tried a lot of different things. If you are still taking Cyclobenzaprine, ask if it actually helps because it's not a pain med it's a muscle relaxant, which can make your joints looser. I didn't see braces on the list, so I'd recommend getting flexible sports braces like the ones bauerfeind sells for your worst joints. I find chiropractic helps but only if you have a skilled chiro who uses low impact techniques, which is key.

    • UnluckyUnicorn

      896d

      I read the whole thing and that sounds very relatable! I have hypermobile EDS. I don’t know if you do pilates as part of your exercise regime but I recommend it as strength training helps stabilize your joints and has personally helped me. I’m still trying to figure it too so sorry I don’t have much advice. Best wishes ❤️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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