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Hey John. Thanks for the welcome. I’ve been to Mayo three separate times and each time they’ve let me down. You get to a point when you have to walk away to save your mental health. I have a myriad of painful conditions- from lupus to migraines to arthritis to Sjogrens. I don’t like to include fibromyalgia in there because there are still people who believe fibromyalgia is not real and when you mention it you can see the eye rolls and disassociation. I have spinal stenosis, multiple bulging discs, scoliosis, trochanteric bursitis, sciatica. I could go on but you get the gist. I am a member of the chronic pain and autoimmune discussions. I just thought this vent would be more appropriate here since it encompasses a lot of symptoms.
Replies to "Hey John. Thanks for the welcome. I’ve been to Mayo three separate times and each time..."
@cwitton1, I'm sorry to hear that you've been shunted from specialist to specialist without solutions. I've added your discussion to the Automimmune Diseases Support Group and the Chronic Pain Support Group as well.
You certainly got a lot going on. I wonder if while at Mayo Clinic you were referred to either the:
- Fibromyalgia and Chronic Fatigue Clinic https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870
or the
- Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
If not, I can connect you with graduates from these programs who have found them to be very helpful, especially when dealing with multiple conditions and unresolved pain.
That is so sad to hear. But health care has become a for profit only business and the doctors know how to schedule 2-3 patients (Medicare) in the same time slot. Maybe more. If you complain they offer you the option to seek another doctor. Which does nothing for anything except push me closer to a stroke. Just kidding, but YOU ALL KNOW!
Hi. I just wanted to say I am in the same position, but in the UK. I was diagnosed in 1982 and hospitalised for 10 weeks with Nephritis/Nephrotic Syndrome together with every other delight SLE can offer. I also have Sjogren’s, Osteoarthritis, Fibro etc etc.
I also struggle with the attitude of medics.
It was far better when they happily admitted they didn’t know it all.
Keep smiling. X
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Ope. Forgot to mention the dysautonomia. Syncope, inappropriate sinus tachycardia, orthostatic hypotension. Mayos solution was to drink more water 🤣