I posted this at a thread but thought i would be good to put in a blog. (I've broke it down to one more stage)
As far as stages go with CFS, my case has certain had various stages. I could break it down to 5 quite distinct stages I went throu
Stage one.. very flu like and on and off. Fevers, sore throats, high temperatures, Achy muscles. This was on and off all the time for about 6-9 mths. (Undiagnosed at this point, with doctors telling me i kept getting something viral)
Stage two.. Huge crash.. bedridden for 9 mths.. constant severe symptoms. extreme fibro (body laying on bed hurt, sleeping with pillow in between legs as it killed for knees to touch, blankets and sheets hurt my body to touch it). Sleeping for up to 23.5 hrs per day. Severely light sensitive (had to keep room dark), sound hurt, lost my ability to understand language, couldnt put words together so had to just communicate by pointing at times, couldnt stand a lot of the time.. I'd just keep lapsing into like unconsciousness, just couldnt stay awake even to have a meal.
Stage three (after about 5-7 yrs of very slow improvement) Remission. (Just like Cheney talks about his patients often having). Symptom free, can live normal life again. I was in remission for 2? maybe 3 years.
Stage four Suddenly crashed. Severe Neurological symptoms. absent seizures, seizures almost like grand mals but i'd keep some awareness just completely loose body control, severe memory issues (forgot what a toaster was, didnt know my own brother in law), jerks, spasms, myoclonus tremors.... Nurses mistook me for a parkisons disease patient, couldnt read books, loss of balance (trying to turn a corner would make me full down).
(got ambulanced to main city hospital as doctor freaked at my neuro symptoms including hyperreflexia and unequal pupils). Insomina waking up all the time and reversed sleep cycle.
Stage five (where i am now) Symptom free CFS as long as i dont do much at all, limited to 3 hrs on feet in every 24hr period (my CFS warning signal is a sore throat). Symptoms ONLY happen on excertion other than my memory issues which are constant and my POTS i have to take care not to trigger (my POTS warning signal to lay is head pressure or dizziness). I have also dysregulated BP now where it goes severely high but also low, Im also left with some IBS. I think the CFS has damaged some of my body systems and left them that way. I can now go out jogging (as long as i keep cool) and i have to run/walk as i cant hold a run..
I can run for 50 seconds at a time before i need to walk for 20-50 seconds as the energy runs out of my legs and i have no energy to move them to run. (Its like ability to produce energy in my cells is slow and my muscles burn out. so i need to give them catch up time by run/walk constantly). I can actually run about 3-4kms for 2 hrs in this strange run/walk manner (the walking is enough for my leg muscles to recover and get energy again).
(I researched this and why i need to run/walk, its to do with aerobic and anaerobic exercise, my system cant do aerobic and has to rely on the other form of making energy. I have some kind of dysfunction there).
im interested in hearing of others stages of CFS with symptoms and if anyone else has had this symptom pattern
Different stages of CFS
Blog entry posted by taniaaust1, Jul 10, 2010.