hey with aging after having chronic fatigue and pain for 27 years--and I have "MCS" am chemically sensitive and there are not many meds or even supplements that I tolerate well and usually micro-doses if do ---ie I feel awful if I have vitamin d and even ibuprofen makes my kidney area burn in pain often the next day---so not worth it usually----but its rough with these issues not to be able to treat. I also do not tolerate invasive procedures well so it really limits my options in mainstream med world for treatment.
so the conversation I want to have with my doctor is if we should and how we would try to figure out what to do about that. I know that is the million dollar question if you you just consider it to be part of cfs/me or something. But i am concerned that as emergencies come up I am going to be left with no options or what if I end up in ER or in nursing home and at some point(s) don't have control over what they give me. That happened once a couple years ago when had to go to ER for acute vomiting/vertigo--they put me on IV for antihistamines and normal adult dose of that makes me drunk seeming--I would just nibble a crumb off a benadryl if needed it in a pinch but avoid even that because of side effects.And its a bummer to not be able to take Vit d because have ostepenia.
My doc and I think I could have Ehlers Danlos which would explain a lot of my fragility and hypermobility etc etc there isnt really a solution for that but genetic testing could confirm and maybe that would help to have in chart. i dont know if doc would be open to referral to geneticist---but I wish they would do comprehensive genetic testing and rule out like Porphyria etc things to explain my chemical sensitivity etc
Or could an endicrinologist figure out some of the intolerances? I did have cortisol testing 5 yrs ago and wasnt positive then. But I feel that the medical system should be obligated to help me figure this out better so there is solid plan outlined in my chart of how to safely treat me---a lot of things are dangerous to me physically and chemically. Does anyone know more about medicine to say if there is a specialist that might be able to solve the chemical sensitivity problem? It just feels reckless to not have that better defined in health chart.
so the conversation I want to have with my doctor is if we should and how we would try to figure out what to do about that. I know that is the million dollar question if you you just consider it to be part of cfs/me or something. But i am concerned that as emergencies come up I am going to be left with no options or what if I end up in ER or in nursing home and at some point(s) don't have control over what they give me. That happened once a couple years ago when had to go to ER for acute vomiting/vertigo--they put me on IV for antihistamines and normal adult dose of that makes me drunk seeming--I would just nibble a crumb off a benadryl if needed it in a pinch but avoid even that because of side effects.And its a bummer to not be able to take Vit d because have ostepenia.
My doc and I think I could have Ehlers Danlos which would explain a lot of my fragility and hypermobility etc etc there isnt really a solution for that but genetic testing could confirm and maybe that would help to have in chart. i dont know if doc would be open to referral to geneticist---but I wish they would do comprehensive genetic testing and rule out like Porphyria etc things to explain my chemical sensitivity etc
Or could an endicrinologist figure out some of the intolerances? I did have cortisol testing 5 yrs ago and wasnt positive then. But I feel that the medical system should be obligated to help me figure this out better so there is solid plan outlined in my chart of how to safely treat me---a lot of things are dangerous to me physically and chemically. Does anyone know more about medicine to say if there is a specialist that might be able to solve the chemical sensitivity problem? It just feels reckless to not have that better defined in health chart.