Desperate for EDS Symptom Management Advice

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.

Your answer

Elisa

2y ago

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

Elisa

2y ago

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

2y ago

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

2y ago

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 ❤️

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

About Alike Wisdom Blog FAQ Editorial Team All Conditions All Posts All Communities

Your Privacy Stories Community Guidelines Terms of Use Privacy Policy Helplines Contact Us Group Chats Guidelines