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Different stages of CFS

Blog entry posted by taniaaust1, Jul 10, 2010.

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
taniaaust1

About the Author

Doing a bit of a blog at http://forums.phoenixrising.me/index.php?threads/tanias-journal-of-drug-treatments-and-other-me-things.13903/page-4#post-273488
  1. taniaaust1
    I left out many many of my symptoms in the brief overview of my stages but should of put in when the MCS started.. that was in my stage 3.. after about 9-10 years of this illness.. and when i also was getting heaps of neurological symptoms.

    My MCS is still there..but much much less then it used to be.
  2. taniaaust1
    Hi Meadowlark


    Stage 2 - For two years, I had sudden, searing fevers that shot up within seconds, making my thoughts swim, my face bright red and profuse "projectile" sweating. (Yes, my sweat hit other people!)

    Wow projectile sweating. That's something ive never had or heard about. I used to sweat so badly during night that i'd have to get up and change the sheets and my clothes but I never projectile sweated.
  3. taniaaust1
    hi tania. wow. excellent summary of your stages of cfs. horrible.

    my illness is a little similar.

    stage 1- abnormal tiredness for many many years
    stage 2- stressful and exhausting job pushed me into further tiredness- sore throats very very often- this stressful 2 years "changed" my body permanently it seems
    stage 3- after time off from work, started my own business, and slowly but surely became sicker and sicker. total nightmare. was working or passed out asleep most of time.
    stage 4- by time i finally quit this business- i was at my worst- sleeping 15-18 or more hrs a day.(felt like i had permanent mono.) seizures. bedwetting. severe hangover feeling. fevers. freezing cold. weak. brainfog. cognitive problems. finally got dxed w cfs. this stage lasted a few years. it was horrible. i was like the living dead. needed help with taking care of myself. considered entering nursing home.
    stage 5- slowly improving- due to rest rest rest sleep sleep sleep- this lasted a few years
    stage 6- more slow improvement due to doing leading a very "boring" lifestyle. now only sleep/rest 10-12 hrs a day. have energy most days to do errands, clean/chores, light exercise, light socializing, etc. overdoing anything can lead to PEM that can last for a day or up to 3 weeks. i am so happy to be much better, but also very angry at how much life i have missed out on due to cfs.

    i would love to hear other long time cfsers stages.

    slow but that does sound positive.. hopefully you will keep improving and get shorter PEM when it does hit and one day.. suddenly realise you have gone into remission.
  4. taniaaust1
    If there's any way you can restart your body & keep it improving slightly (not too fast), I think it gradually gathers momentum & does a certain amount of it's own healing.

    But your body needs the right diet (for you), restful sleep, some added supplements to help support the immune system & a very small amount of exercise (or movement). I don't mean aerobic exercise. I mean just gentle movement of all your body parts (with frequent rests). If you are confined to bed, it really does help if you can move your limbs regularly. Gets the lymph system working. When you are completely immobile in bed, your lymph system stops completely & toxins build up rapidly.

    Sitting outside in the fresh air/sun has a positive effect too (even if you only sit in a chair & don't do anything).

    Im quite mobile nowdays and dont even have to nowdays go to bed during the day (well unless i went out and run into POTS issues from not drinking enough).

    I actually got quite fit when i was exercising including doing the very short runs for 2 hrs every day.. but that didnt at all improve the length of time i could run even after doing that for over 3-5 weeks.. it was still only about 50 secs run sprints till i hit walk to then be able to run again. Very frustrating when with increased fitness.. there is no improvement at all.

    I researched how fitness improves in normal people and within 2 weeks they find their fitness has increased and they can do more... not so in my case thou with the fact i could exercise that amount without making myself ill and was expecting improvement. My body just dont function aerobically. It's not in my head as it truely cant do it.. i timed when i had to stop and on looking at watch when i stopped it was almost exactly the same time down to almost the second (52-53 seconds before a sudden burn out). It just hits a certain amount and stops (legs burn out and cant move them well then as no energy there).

    Im on tons of supplements.. i dont really know what else i could be doing to help at this point. (money wise .. my supplements already cost me more then my house rent does).
  5. meadowlark
    Correction -- I loved reading all the comments, but I meant to refer to taniaaust1, not l'engle, on the problem with fibro while sleeping. Cognitive challenges, I'm afraid.
  6. meadowlark
    Hello. I am new here.

    Stage 1 - Severe, 18-hour daily migraines since 1982. But strangely, if I had a fever, the migraine turned off like a light switch. When the fever retreated, migraine switched on again. Also, pain and numbness down the left side of my body during migraine. Extreme sensitivity (nausea, fainting) to tobacco smoke. Still, I went to work every day until 2000.

    Stage 2 - For two years, I had sudden, searing fevers that shot up within seconds, making my thoughts swim, my face bright red and profuse "projectile" sweating. (Yes, my sweat hit other people!) The migraines continue during a patchwork of new symptoms, each lasting about 6 weeks. Examples; inability to lift left arm above my waist, inability to hold anything with that arm and hand. Inability to reach my destination when walking (would lose my way even going to the grocery store 3 blocks away). Grand mals, often when I was alone on the street. (I relied on the kindness of strangers, and woke up in strange emergency rooms where good samaritans had driven me while I was unconscious. Sensitivity to sunlight seems to have been a factor in the seizures--even sunglasses didn't help. Neither do anti-convulsants.) Dizziness. Vertigo, often followed by sudden blackouts. Sky-high fevers, many glandular. Dragging of left leg and limping. Aphasia. Ringing in ears. Always tired. Cognitive problems. I launched a disability case.

    Stage 3 - Received disability after a two-year fight with the government that went to the courtroom. 18 months later I entered a crash. Symptoms of Stage 1 and 2 continue. New symptoms that came with the crash include severe fibromyalgia. (I now realize that some of the body pain in my Stage 1 was probably fibro.) I can't sleep through the night (or sit or lie down) without having to turn or change position once an hour, as my own body weight against the mattress/pillow causes intolerable pain. (L'engle, it is a huge comfort to read about someone else having this. In my case, when I turn over, the side of my body or limb that was against the mattress is hot to the touch and quite pink.) Also, a new level of exhaustion (the kind that you have to have ME/CFS to understand). Inability to stand for more than 5 minutes--due to orthostatic intolerance, and inability to bear the weight of my own arms. Weakness and tenderness in wrists (I bruise myself if I wear a watch) and ankles/feet (wearing flats that were comfortable for years now leave bruises just above each toe). I now spend most of the day with my arms, wrists, legs and feet resting on pillows. I can get up to go to the bathroom or the fridge (luckily, my apartment is tiny), then back to a half-sit or lying down. Sleep patterns distorted....two hours awake, four asleep. I live alone. I can cope, and though the grand mals are rarer, they terrify me. Re companionship, I can still talk a blue streak ... but holding the phone is very hard, and (as many shut-ins know), no matter how cheerful you are, your friends stop calling. The emotional stress is very bad.

    I've been like this for 8 months. I know it can be much worse than this, so I am thankful that I haven't crashed as far as many others.
  7. Enid
    Pretty much the same pattern of "events" definately stages of this illness over a long period for me. So glad to see you've posted.
  8. sandgroper
    Stage 1 Hospitalised with Strep throat and a viral infection

    Stage 2 Tired but able to work & exercise

    Stage 3 Still working but driving further - developed what I thought was severe PMS
    had muscle pain, headaches, fatigue, emotional lability

    Stage 4 all the above plus Periodontal disease, sinus infections

    Stage 5 Had 2 inectious episodes whilst travelling overseas brought on severe cognitive dysfunction
    resulting in leaving work decided
    to travel and "get well" expereinced hypersomnia but with pacing could socialise

    Stage 6 partial remission and return to work at lower level for 18 months

    Stage 7 another overseas trip, relapse and never worked again (at least in normal job)
    over next 14 years had moderate OI and developed insomnia, migraine,IBS symtoms

    Stage 8 5 years ago -severe worsening of symptoms - seizure like episodes, unable to be upright
    for more than a few minutes, unable to write, talk on phone, unable to drive

    Stage 9 housebound except for occasional medical appts, can walk around house and sit for
    short periods.....if upright for too long get severe tremors, speech diffulties, heart
    racing

    well thats as much as I can remember right now...sure there is more LOL!














    Stage 9 able to be upright for short periods, occasional phone calls, some writing. still
    lose control of my limbs if upright for any length of time
  9. bigmama2
    hi tania. wow. excellent summary of your stages of cfs. horrible.

    my illness is a little similar.

    stage 1- abnormal tiredness for many many years
    stage 2- stressful and exhausting job pushed me into further tiredness- sore throats very very often- this stressful 2 years "changed" my body permanently it seems
    stage 3- after time off from work, started my own business, and slowly but surely became sicker and sicker. total nightmare. was working or passed out asleep most of time.
    stage 4- by time i finally quit this business- i was at my worst- sleeping 15-18 or more hrs a day.(felt like i had permanent mono.) seizures. bedwetting. severe hangover feeling. fevers. freezing cold. weak. brainfog. cognitive problems. finally got dxed w cfs. this stage lasted a few years. it was horrible. i was like the living dead. needed help with taking care of myself. considered entering nursing home.
    stage 5- slowly improving- due to rest rest rest sleep sleep sleep- this lasted a few years
    stage 6- more slow improvement due to doing leading a very "boring" lifestyle. now only sleep/rest 10-12 hrs a day. have energy most days to do errands, clean/chores, light exercise, light socializing, etc. overdoing anything can lead to PEM that can last for a day or up to 3 weeks. i am so happy to be much better, but also very angry at how much life i have missed out on due to cfs.

    i would love to hear other long time cfsers stages.
  10. Victoria
    Taniaaust1, that second stage of your CFS sounds terrifying. I am glad to hear it's finally over & you are improved. I DO so hope you don't relapse back to that stage ever again.

    I couldn't jog or run at all, but in recent weeks, I have been walking 2-3 hours a couple of times a week (very slowly) with just a rest when I get home due to sore feet, hip & lower back.

    Dare I suggest I am getter fitter (or were they just good days ?).

    I have a theory that when you have severe symptoms for months (or years), your body forms a habit & recognises those abnormal symptoms as normal. I think it gets to the stage that the mind/brain forgets what normal function is.

    If there's any way you can restart your body & keep it improving slightly (not too fast), I think it gradually gathers momentum & does a certain amount of it's own healing.

    But your body needs the right diet (for you), restful sleep, some added supplements to help support the immune system & a very small amount of exercise (or movement). I don't mean aerobic exercise. I mean just gentle movement of all your body parts (with frequent rests). If you are confined to bed, it really does help if you can move your limbs regularly. Gets the lymph system working. When you are completely immobile in bed, your lymph system stops completely & toxins build up rapidly.

    Sitting outside in the fresh air/sun has a positive effect too (even if you only sit in a chair & don't do anything).