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Medication, Surgery, and Physiotherapy Among Patients With the Hypermobility Type of Ehlers-Danlos Syndrome
submitted 1 year ago by [deleted] from sciencedirect.com
[–][deleted] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 0 fun3 insightful - 1 fun - 1 year ago (6 children)
Painkillers...Surgery...Physical Therapy 😞
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - 1 year ago (5 children)
They dont give painkillers anymore. The vast majority of EDS patients have poor results from surgery and disappointing results from physical therapy.
[–][deleted] 2 insightful - 2 fun2 insightful - 1 fun3 insightful - 1 fun3 insightful - 2 fun - 1 year ago* (4 children)
That doesn't terribly surprise me. You seem desperate, so I'll throw out some unsolicited medical advice I've seen mentioned on the chronic illness forums that you may want to look into, as you might actually be able to get a doctor to try it.
Apparently people are taking ultra low dose Naltrexone. It supposedly works by tricking your body into upregulating dopamine receptors. Like if you get dependent on painkillers (or any other drug obviously), your body adjusts to all those extra opiates that werent there before, and starts downregulating your opiate receptors, and then your baseline pain is worse than where you started. The idea is the low dose naltrexone does the opposite, and using small amounts of opiate blocker it can upregulate your natural opioid system, and improve your pain levels
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - 1 year ago (3 children)
You seem desperate
I am so desperate.
ultra low dose Naltrexone
Yeah, I don't know about that. It concerns me.
[–][deleted] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 0 fun3 insightful - 1 fun - 1 year ago (2 children)
Yeah I don't know about it either, I only mention it because you are desperate for alternatives
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - 1 year ago (0 children)
I think they're gonna want $200 for a visit when they know less about it than me.
There's a whole issue about opioid antagonists like Naltrexone. It takes away the natural happy reward signal.
I guess it concerns me that I use booze and kratom for pain relief and naltrexone would counteract both. I'm fine going without kratom and ya know... I don't think pain meds are ever going to work for me, my tolerance just goes up too rapidly.
I dunno.
[–][deleted] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 0 fun3 insightful - 1 fun - (6 children)
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - (5 children)
[–][deleted] 2 insightful - 2 fun2 insightful - 1 fun3 insightful - 1 fun3 insightful - 2 fun - (4 children)
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - (3 children)
[–][deleted] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 0 fun3 insightful - 1 fun - (2 children)
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - (0 children)
[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 0 fun2 insightful - 1 fun - (0 children)