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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I, for one, without hesitation would classify my condition as having progressed. I
because my baseline symptoms exist even without exertion. PEM just amplifies some of the symptoms
SEID seems a vague improvement by virtue of not containing within it a pained trope/term as I mentioned above,
"SEID" is actually the word "intolerance" as the troublemakers
CFS cannot be topped as worst term ever, it helps me in one small sense, if i see a doctor or someone working in the field of diet/nutrition and they claim a supplement or dietary alteration helps "Chronic Fatigue" in their damn laundry list of claims I know to discount them because a competent doctor who vaguely knows about ME/CFS would know not to hijack that terminology and refer to someones temporary lethargy as being akin to our s***ty condition that generally affects our cognition as much as our locomotion and constitution.
SEID seems a vague improvement by virtue of not containing within it a pained trope/term as I mentioned above, I don't mind disorder vs syndrome as the people who have caused trouble for me don't focus on distinctions like that, they just confuse CFS with things like anemia, depression driven fatigue, low vitamin D and the like..
my smaller issue with "SEID" is actually the word "intolerance" as the troublemakers I mentioned are also the type to scoff at "Intolerance" - I could imagine them ROFL-ing and saying "so you think you are allergic to exercise?"
basically SEID seems *really* damn close to being a well serviceable term that describes a large enough part of our problem and commands a bit of authority as should be the case with something that can rob us of any type of social life or autonomy
I can relate to SEID. Fatigue is such a misnomer. Everybody can relate to fatigue (young mothers) but this is just so much more than that and very difficult to articulate. My involvement is full body, including mind, eyes, speaking, watching, chewing, heart, you name it. I also have unusual pain, and when at my worst, in the strangest places. I have yet to eat today as the mere thought of the process is exhausting. I can't even think about it let alone actually do it. Or even fix it. This stuff is full system involvement. I so enjoy being alone, I can't manage to think about being around people. For one thing I can't stand or sit more than a few minutes. Let alone carry on a conversation most of the time. And nobody "gets it". I finally allowed my very supportive, undemanding husband to purchase a small power scooter for me. Only because the one plan I have is to attend my oldest grandson's college graduation. A three day drive, in our camper van he is working so hard to ready for my utmost comfort. I can't bear to not try. If I do well we plan on visiting other areas besides Iowa and Nebraska. Hence the scooter. I can scoot into the grad ceremony in a large arena. I won't have to do stairs or walk. The odd thing is walking briskly does not exhaust me as much as slow walking or standing and sitting. With this dizziness it takes more effort to keep my balance. And also the riding may be difficult unless I have a good remission in the next 2 weeks. I use muscles while riding.
If I don't get to go to this grad, it will pain me immensely. Last year I had to miss his brothers high school graduation. Then when the weather warmed in June I felt better.
I hate this disorder, syndrome, disease. I have no life outside my bedroom and I just don't seem to care. I can't risk getting upset about something I can't do anything about but try to manage. It is what it is and being upset or depressed only makes things worse.
... hate this disorder, syndrome, disease. I have no life outside my bedroom and I just don't seem to care. I can't risk getting upset about something I can't do anything about but try to manage. It is what it is and being upset or depressed only makes things worse.
So true. And like I have said, manage and don't worry. My Gone With The Wind mantra. Frankly my dear, I don't give a damn. But that doesn't mean I like it. I just don't care.I went to check on my stooped-over 93-year-old mother... . She said “stop worrying, everything I need to be happy is right here between my ears... .”
got no safety bar stuff on my bath and I am a little more phobic of people waltzing into the bathroom cause doors not frosted and Bath makes no noise to indicate its occupiedP.S. I don't see how people manage to shower. All that standing, bending, straightening. I bathe. I soak and rest to warm my muscles and ponder the day. I have safety grab bars.
Just sayin'
Think about it
Glad you have found a work around. We do have grab bars picked up very cheap at thrift stores. Also have a solid wood door and nobody but the two of us in the house. I need the hot water and a soak, I can't do cold at all. Could you hang a curtain over the glass on the door? I get the post bath crash. I have at times barely made it to the bed 10 ft away before I went down.got no safety bar stuff on my bath and I am a little more phobic of people waltzing into the bathroom cause doors not frosted and Bath makes no noise to indicate its occupied
I apply gel strategically with a flannel when just standing in bathroom - get my shaving done (head as well as face + neck) for a few days then test how cool water I can tolerate initially hopping under in the shower and use minimal movements to wash soap away whilst agitating it with sponge for better washing then as final phase i grit teeth and direct shower head at my abdomen and keep adjusting tap slowly until I can do about 30 seconds at the coldest temp possible in the (possibly erroneous ?) belief that this will re-constrict big blood vessels in the abdomen and help avoid post shower crash ?
If i do this and then go sleep for the night Im generally ok the next day. back when i was still using warm water and applying soap in the shower itself I would be stuck on the couch (too dizzy and faint to stand) for 4 to 6 hours and would need someone to bring me drinks
That was a study done on Chronic Fatigue patients not ME. The results don't apply to ME patients.and a Japanese study showed that there is chronic neuroinflammation in the brains of ME/CFS patients.
SEID is the best name in my opinion. "ME" often doesn't return relevant Google search results. "ME is a delusion" for example, doesn't return relevant results. SEID describes exertion being harmful.Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disease characterized by chronic, profound, disabling, and unexplained fatigue.
Can you please explain the difference between ME and CFS? Are there different diagnostic tests? Different treatments? Different ICD10 codes?That was a study done on Chronic Fatigue patients not ME. The results don't apply to ME patients.
SEID is the best name in my opinion. "ME" often doesn't return relevant Google search results. "ME is a delusion" for example, doesn't return relevant results. SEID describes exertion being harmful.
That was a study done on Chronic Fatigue patients not ME. The results don't apply to ME patients.
I see a top specialist, who diagnosed me with ME/CFS, but uses ICD 10 code R53.82 for me and other patients, rather than G93.3, post-viral fatigue syndrome, which is supposedly the correct one.. But, many of us did not have a specific triggering viral event, so it's not appropriate.I believe you can't get a diagnosis of ME in the US, because the ICD code for CFS is always used, never the ICD code for ME.
I see a top specialist, who diagnosed me with ME/CFS, but uses ICD 10 code R53.82 for me and other patients, rather than G93.3, post-viral fatigue syndrome, which is supposedly the correct one.. But, many of us did not have a specific triggering viral event, so it's not appropriate.
I'm wondering if I haven't seen it used by doctors because they don't want their patients pigeonholed, and they want the latitude to be able to investigate causes of the fatigue, and that's why they use R53.82 which gives them more latitude to order tests and treatments. There seems to be no suggestion from what I've seen that it's used as a psychiatric diagnosis.