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@char8972

You are not alone! After 3 failed ankle fusions my ortho suggested genetic testing, esp since I'm adopted. I was diagnosed with Erles Danlos Syndrome (connective tissue disorder) and have the MTFKR gene mutation. I was also diagnosed with RA, Sjorgens, Fibro and peripheral neuropathy from chemo. It's an exhausting challenge to manage all these overlapping symptoms. I have a terrific therapist who keeps me sane and puts things in perspective for me. I keep a positive outlook and laughter is always the best medicine. After beating St4 Lymphoma, I'm blessed to be just be here. Learn to slow down, do a few chores and rest. Run a few errands, come home and rest. Learn to advocate for yourself with your Drs. Insist on testing, alternative treatments and make sure your Dr is really listening to you. It will take time but you will find a new normal. I won't lie, it sucks! I hate the fact that I am disabled and will never be a commercial chef again. I'm grieving the loss of my career and I'm filing for disability. I pray you find some answers🙏🏼❣️🙏🏼

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Replies to "You are not alone! After 3 failed ankle fusions my ortho suggested genetic testing, esp since..."

@char8972 Your post made my day! I could feel the strength you've gained by having a positive attitude even with all that illness..with grief and disability. I agree with everything you write about pacing activities. I agree with having a good therapist, and laughter IS the best medicine. I haven't had genetic testing but appear to have something on the spectrum of EDS. I live with RA, Sjogrens, Fibro and radiation damage to my right head, neck and upper back because of treatments for a parotid gland tumor. If illness is chronic and not going away, the only way to cope is to begin to creatively change your life. Well, wishing you the best! I hope others take your advice to heart.