Hey y'all, I need your help... this is directed at folks diagnosed with fibromyalgia and/or chronic fatigue syndrome/myalgic encephalomyelitis and other rather rare autoimmune conditions: how did you get diagnosed? Especially aiming at German healthcare system experiences... help me out, maybe?
#ChronicCondition #ChronicPain #fibromyalgia #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #FollowerPower #Help #MedicalTalk
@valhund From a German friend of mine with CFS who hasn't gotten around to moving to Masto yet:
"Since it is a diagnosis-by-exclusion type thing, (the PEM is a clear indicator though), it is one of those things where all but the most clueless doctors recognize it for what it is, but since there's no official treatment, they can only help you try off-label stuff.
Getting an insurance to recognize it seems impossible, and even the organization responsible for giving out disabled-passes is refusing to recognize as something more serious than a paper-cut."
@valhund For Germany, maybe I can help with fibromyalgia. Fibromyalgia is diagnosed by rheumatologists or in a rheumatism outpatient clinic. One is referred there by the family doctor.
When my unexplained symptoms got worse and worse, I went to my family doctor, who then sent me to the rheumatologist. I made an appointment at the rheumatism outpatient clinic of a university hospital. Afterwards, I spent about two weeks in a specialized clinic for the final diagnosis. I have no experience or information on the extent to which the other diseases can be clarified there. I hope the information can help.
Maybe the website mecfs.de can help with the question for ME/CFS diagnosis.
@serenityfreaksout4 ach, danke für deine lieben Worte! Ich find's super, dass es bei dir so gut gelaufen ist. Ich hoffe mich nimmt irgendwann mal jemand ernst genug. :')
Mal sehen, ob ich hier in Schleswig-Holstein weiterkomme. 🫠
autumn dog 🪴
Kandrel
Serenityfreaksout