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Apr 24, 2016 4:24 PM

it's been a while since I posted something. life hasn't exactly been busy, but more... overwhelming? especially the past month.

I think I mentioned occupational therapy in my last update. I just had a session on Friday and, well. My therapist is also suspecting it's EDS causing the laxity, because just the month before, she treated a patient who also had EDS. if that's truly what it is, then I don't have many options.

All I can do is try strengthening exercises, but most of all, joint protection. Joint protection is becoming mandatory. Pain management is must, I might even end up on narcotic patches, which I don't want, but regular pain medications are not working for me and I have full body pain now. I'll do what I have to do but, it's a bummer realizing I'll never be 'normal'. Sure, normal is overrated, but I'd take normal over being in pain all the time.

Yeah, anyway. My genetics counseling appointment is next Wednesday, so I guess we'll see if it's confirmed or not.

Apr 24, 2016 5:57 PM

Hi Lynxbun,
Taking pain meds sucks, there's no two ways about it! I've been on them for years now. One of the things that has given me the most relief is the fentanyl patch. The side effects have been minimal. Hopefully hearing from someone who's using it will ease your concerns a little bit.
Wishing you the best.

Apr 24, 2016 6:19 PM

I recently got diagnosed with EDS. It's a tough thing to hear but there are ways you can live with it. I still go in waves of the grieving process over my changed life but I'm learning what helps me most. Meditation, physical therapy, adjusting tasks and life to fit my needs, and medical marijuana (CBD based tinctures and sublinguals with very low THC) have helped me. Chiropractic care is useful for getting my various joints back into alignment that don't want to stay. I'm about to start acupuncture so hopefully that will be helpful. Heat, Epsom salt baths, regular exercise that is not harmful to my joints helps tremendously (stuff like elliptical and bike). Learning to calm your mind when you are in a lot of pain can be useful since thoughts and emotions can fuel the fire of pain. I have several braces for my fingers and knees that help stabilize and take supplements like fish oil, turmeric, and glucosamine chondriontin with MSN for joint support repair and inflammation. Hope these ideas help and that you find the answers you seek.

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