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Members shared widely varying experiences managing their care teams, with some seeing more than 10 specialists and others intentionally... Read more
@A MyFibroTeam Member I drove 2 1/2 hours to get to Mayo Clinic. Luckily I don’t need to go there very often as they have many resources online. It was well worth the trip! Sometimes we need to travel a distance to get answers or validation for what we already know. Keep pushing for what you need. You will get there.
@A MyFibroTeam Member
I appreciate your response. I am not very pleased with my PCP. He takes a lot of vacation time. I feel like I nag the office a lot for answers.
The other day I was referred to a pain management doctor. I called the office to ask a couple of questions. Left a message. No response. Decided to stop in and make sure I could locate the address. 5 office staff were sitting when I arrived. The receptionist greeted me and I said I had a couple of questions. Then she said sure, this person will help you. That person rolled her eyes, it was so hard to ignore. In the back of my mind I was thinking about why they never returned my call and why is this person rolling her eyes about answering questions. Anyway I canceled with them and scheduled with Cleveland Clinic. The last 2 years have been the most miserable years of my life with all the pain (physical and mental). I’m hanging on by a thread. Thank God I found you and everyone here.
@A MyFibroTeam Member I am so dissatisfied with the doctors around here. Cleveland Clinic is outstanding but they are an hour away. There’s only 1 hospital for the entire county I live in and it’s understaffed and patients lined up around the hallway waiting for the doctor. I am in survival mode right now. I’m in the hole for sick days and I am so fatigued. It’s hard. Thanks for listening. ❤️🤗😘
I have a good team. It took many years to get.
@A MyFibroTeam Member one of the things recommended at Mayo Clinic was to stop going to more doctors to seek new answers, which seems a bit strange coming from a bunch of doctors. I think it’s part of their brain retraining philosophy, the idea that going from doctor to doctor just continues the cycle of focusing on this condition and little else. I was seeing my GP at least once a month. I realized that nothing was really ever getting done during these visits. I’ve now postponed my visits with her and I think my next visit will be an e-visit. I plan to ask her if we can go to once a year unless I have other issues that come up. If that occurs I will make an appointment. I think with this condition you do get to a point of stability (sort of) where you are on meds that maybe take the edge off, you’ve worked on mental health, fatigue and lifestyle choices and all that’s needed now is to try to maintain the best you can. The doctors can only do so much for a condition that never really goes away. I will continue to see my massage therapist once a month (more if I can afford it) especially now that we’ve figured out the right amount of massage to at least offer some temporary relief.
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