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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 1 day ago | Replies (6914)
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@chelle2001

I head to Mayo on October 3-5 to meet with a General Practitioner and Rheumatologist. Then I have another trip scheduled on December 2nd to have a consultation with the Fibromyalgia Clinic in the Integrative Medicine and Health Department. I'm hoping to get my visit with the Fibromyalgia Clinic moved up sooner (fingers crossed). Who diagnosed you with CSS? Was it a certain doctor/department at Mayo?

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Replies to "I head to Mayo on October 3-5 to meet with a General Practitioner and Rheumatologist. Then..."
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2022

Hi @chelle2001, my apologies for the delayed response. Oh, your first trip is pretty soon! That's good, I bet you're counting down the days. Hopefully you can get the gap closed for trip #2. My fingers and toes are crossed for you. Keep trying.

Hmm, who diagnosed me with CSS, great question. I diagnosed myself by process of elimination. When my local doctors stuck to their specialty diagnoses of small fiber neuropathy, migraine, neuralgias, and other things that were for lack of figuring out anything else from x-rays, scans and tests, I went searching on my own. Basically, I knew what I had, diagnosis wise, but my symptoms escalated even those. Treatments and medications had become less effective so that meant it was time to regroup and figure out that CSS was behind it all then come up with a plan on how to find acceptance and learn to live as best I could with chronic conditions.

I applied to the Mayo PRC, and it wasn't until I had interviews with their medical team and was accepted into the pain rehab program that I knew I "qualified" and had CSS. Dr. Sletten looks for 3 key elements to know someone can benefit from the rehabilitation program:

1. Duration and effectiveness of treatments
2. Potential for push/crash
3. Emotional distress

The main thing to understand about CSS is that it's an umbrella over many chronic conditions like, fibromyalgia, neuropathy, chronic fatigue, chronic back pain, migraine, IBS, etc... Unfortunately, these chronic conditions aren't going anywhere and learning how best to live with them becomes the goal.

For me, I had nothing left to do or figure out, so the program taught me how to better my chronic situation by providing a plan. It sounds like you are still in the search process of finding answers and looking for treatments, and I hope you do. It's important to learn as much as you can about your conditions and be your best advocate. Mayo Clinic is certainly the best place to do that. What would you say are your biggest concerns or questions about your conditions, and what are you hoping to achieve from your appointments at Mayo?

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