@J_Windrow I totally spaced it was Rare Disease Day! Thanks for the reminder. I have an autosomal dominant gene mutation of the connective tissue. Hypermobile Ehlers-Danlos Syndrome. 1 in 5000 was the last estimate.
#cosospoonies
@insomniacviolin my daughter has a very severe case of CMT 1-A. So it’s something I always remember on rare disease day is because it’s not rare in our family.
I am familiar with Ehlers-Danilos. Fingers crossed yours is mild.
@J_Windrow on several meds to manage the symptoms. Biggest things I experience are bodywide muscle spasms, randomly and easily dislocated joints, and without medication I'd be at a 6 to 7/10 pain all the time but since it's nerve related and muscular pain, they have me on meds that block a significant deal of nerve pain (seizure meds) and then Cymbalta for muscle and nerve pain and baclofen to help with muscle spasms. I stay at roughly a 1 to 2/10 mostly.
@insomniacviolin my daughter is in recovery from addiction so the only medication she takes even after major surgery is Tylenol. She also has a lot of pain. She doesn’t even take Benadryl. I’m glad that you can get some pain relief. She also has tons of muscle spasms. They were talking recently about breaking all of the bones in one of her feet in an orthopedic surgery and I couldn’t imagine having that kind of surgery without pain killers. People don’t understand how hard it is.
@insomniacviolin It was pain management by professionals that got her hooked. I also have chronic pain as does a friend of mine who suffered burns covering 80% of his body (it was a miracle he survived). Sometimes there's not much available other than self-hypnosis to dial it down.
I'm 44 years clean and sober and I'm the queen of alternative pain management. My burned friend has a bit more wiggle room, but he too relies heavily upon self-hypnosis
@J_Windrow proper pain management is key. It's just a shame that most immediately turn to opioids as the only way to manage pain. Identifying WHAT is really causing the issue is key. I've had many patients over the years where the opioids didn't really work cuz it was a bad muscle spasm or bad nerve pain causing the problem. Change of meds or treatment fixes the issue.