I am so tired of doctors literally accusing me of faking CFS, or telling me it's all in my head or I just need exercise and all the other de-humanizing comments that I'm sure everyone here has heard.
I became too sick to work and diagnosed with CFS 9 months ago yet continue to be emotionally abused by the medical community that is supposed to be supportive and caring. I understand they can't do anything without tangible treatable symptoms, but what the hell happened to compassion instead of accusation.
Friday and Monday were the kickers when my primary care doctor canceled my disability and said he was done with me and then my rheumatologist said I need to go to a psychiatrist and get strong anti-depressants and go back to work.
It didn't do any good to describe the debilitating PEM episodes or show them my 4-month energy log indicating clear patterns of push/crash (I'm not very good at this yet) or detailing the radical food and supplement changes that haven't helped.
Or explaining the "brain blinks" as I call them, where I can't understand words coming out of someone's mouth or getting lost 2 blocks from my house because all of a sudden nothing looks familiar, or it once taking nearly 20 seconds to figure out the only reason my shoe wouldn't fit right is because I was trying to put the left shoe on the right foot
Or rebooting my phone because an app wasn't working right, only to discover afterward the app was fine, it was my brain that didn't recognize anything on the screen. Or having to take a nap in the parking lot of a grocery store after shopping or sleeping for 12 hours after simply having lunch with some friends. They just don't care, they treat me like it's all just made up stories to get a free ride because I'm a lazy scammer looking for handouts.
I won't go into my resume' of how incredibly wrong they are, of how amazing my life was just a couple years ago. I told a Patient Advocate a few days ago I would gladly give up the disability check if just once I could hear a doctor say "I understand, I'm sorry you are going through this, I wish there was more I could do"... anything other than being judged and convicted as a lying criminal.
The CDC changed their medical definition and physician recommendations for CFS a couple of years ago, medical science breakthroughs in clinical trials and privately funded studies are making great strides at identifying potential biomarkers and clearly show brain and body measurements revealing PEM at the cellular level. Yet the only profession that seems to care is the alternative medicine piranhas that want $10,000 for a hyperbaric chamber or to sell me $500 worth of monthly supplements (that last rant was just emotional, I don't know if any of that stuff works).
Then there is my friend of 30+ years who has no idea how much it hurts when he asks me how I'm enjoying my long vacation and asking if I plan to scam this into early retirement with permanent disability or telling me all I need is a couple of Rock Stars if I "really" wanted to go back to work... or jokingly say "get off my paycheck".
And of course, my family has quit asking "how I am doing" or calling or texting at all anymore because... well hell, I don't know why... it sure feels like they don't care though.
Anyway, I just wanted to whine to someone who understands, I've never joined a support group before so maybe my pity party for one will bare some kind of fruit.
feeling unheard and lonely
Hi Everyone- Hope you are hanging in there. This disease can be so terrible :( I just wanted to post some updates on the current research for ME/CFS. For those that missed it, the 3rd symposium held by The Open Medicine Foundation was on Saturday. I tried to watch online and am still going back to watch what I missed. Videos are availabe on their facebook page and soon to be uploaded to...
I am fairly newly diagnosed with chronic fatigue syndrome, and feeling very frustrated. I am struggling to find the right medications and dosages to manage my symptoms. I imagine this is normal, but please tell me it gets better. Any suggestions getting through this?I am also struggling to manage working full time. I am hopeful that i might start to feel more energy with the right medications...