I’m Suzanne from Minneapolis, MN. I am one of the co-founders of the Minnesota ME/CFS Alliance and hope that no one has a 15 year journey of misdiagnosis like I did. I began my journey for answers during a period in MN when there was absolutely no physician awareness for this illness. I’ve been sick since late 2002 and noticed the onset of my illness after receiving lifesaving blood transfusions after the birth of my 3rd daughter. I wasn’t diagnosed with ME/CFS until 2017, but had been to a dozen physicians throughout the Minneapolis area in search of help and answers. I get lots of pain with my ME. I became progressively worse, left my corporate career and eventually was homebound and bedbound 50% of my day in 2015-2017. I had lived an active life before my illness as I was in the Army for a decade (Blackhawk helicopter pilot throughout the 1990’s) and avid skier, runner and horse rider. By 2015, I spent most of my time in a hot bath for pain relief or if able, I attended physical therapy (PT) sessions where I would try to exercise my way to better health. After I finished my training, they would wrap me in hot packs head to toe, and try to soothe the damage that was done from the earlier session. Just in 2016, I had over 120 PT sessions to help with pain, costing me thousands of dollars. I often needed a cane to walk (at the age of 49) and was prescribed up to 12 drugs at one time – all for various diagnosis that I really did not have such as injections for Rheumatoid Arthritis (that I did not have), spinal injections (2-4 a year) and years of harmful pain pills – because the doctors didn’t know what else to do. I finally received my diagnosis from an out-of-state specialist and was able to present my results to a local family practitioner who took me seriously, and has now been able to take what she’s learned to help others with ME/CFS.
