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when does it stop getting worse???

Discussion in 'General Symptoms' started by hurtingallthetimet, Aug 14, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

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    does these illness ever stop getting worse and just come to a point that it is as bad as it gets???

    i have been so wiped out...all labs that doctor has done are normal etc...the pain and fatigue have been getting worse over last months to year...so i know that the withdrawls from the seroquel im having which are beyone horrible arent the cause of my getting worse..that was starting before the withdrawls..

    just venting...seems any extra thing i do causes more pain and fatigue..extra meaning things i have to do....get out of bed...
     
  2. lnester7

    lnester7 Seven

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    I have been asking that question too. Would be interesting to know what the older sick say. For me treating the active infections help not to feel like your dying, Has not help with the energy production issue.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Maybe not a very helpful answer, but it really does stop getting worse and start getting better when you find that combination of treatments that works for you. But it can be really hard to find--as we all know. But, it can happen.

    Sushi
     
  4. Tammy

    Tammy Senior Member

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    At one point during my illness phase things were so bad I didn't see how a body could withstand the onslaught and many times I really did not think that there was any hope whatsoever of coming out of it.............but I'm here to tell you that things can and did get better for me. Sending you a heartfelt hug. Tammy
     
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  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think if your doctor has no more tests to do, you need to find a new Dr. My Dr finds plenty wrong in my lab results. He has been treating me for at least 3 years. He once remarked that he had never seen levels so low, it was in regards to something with my energy levels. I found him on the co-cure.org website.

    GG
     
  6. Tally

    Tally Senior Member

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    I also have nothing wrong with my lab results, except for marginally low NK Cells and C3. I also feel like I keep getting worse and worse. I read somewhere that it levels off after a year or two but it did not happen for me.
     
  7. Bob

    Bob

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    It's different for everyone, but I started stabilising once I stopped pushing myself through the pain. This came about when I read a booklet about pacing. After I learned to pace, I learned to rest more, and to accept my new limits. A big learning curve for me was also to create an activity calender. Using this, I was able to work out what causes my symptoms to flare up, and what doesn't harm me. For example, 'activity' always made me worse, and health supplements nearly always made me worse as well. So now I avoid health supplements (vitamins, and herbs etc.) and I tune into the levels of my symptoms very carefully and avoid activity that will cause a flare up.

    Like I said, it might be different for everyone, but this is what happened for me. For the first 4 years I was highly unstable, and I only had to look out of the window for my symptoms to flare up massively. Since I started pacing and resting extensively (I call it 'intensive resting'), my symptoms stabilised, so that I can now be a little less careful, and small amounts of activity don't send me into a spiral towards hell. I don't know if I stabilised because of pacing, or if it would have happened anyway, but I stabilised after I learned to pace.
     
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  8. hurtingallthetimet

    hurtingallthetimet Senior Member

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    thanks everyone for the advice and replies..wehn im really upset it helps to come on here and vent becuase i know others are going through the same...i appreciate your thoughts..

    bob i had learned aobut pacing from the support groups...if the doctor told me i had forgotten...it took me a very long time to except being ill...im doing better than i had been at excepting it i think...i use to really overdo it with shopping, becuase it was the only thing i couold still really do, but id get in panic and overdo it everytime, one doctor made comment that taking care of family right now is all that i can do and i need to see how important that it...becuase i did put such a high value on my job, i loved working for my family...i always looked at taking care of kids not a job but soemthing as a Mother naturally i should do,

    i have been pacing myself...ive exhausted our money with test, physical therapy, treatments, vitamins, natural supplements, medications, everything...like most everything comes back normal...i have back issues, migranes, memory loss things like that associated with these illness...but no lab test to pin point and be given something to stop from getting worse..and i keep getting worse...

    and i will be having to drive one child to from shcool, ive mentioned on borad about being nervous the driving, but have to. no bus, no one lives around to communte, its not on highway which is my biggest panic problem, so im blessed with that...but with having a family
    {though they do help out so much}, and i feel guitly for that them picking up my slack....therers shopping and errands i must do, and as i said the least little thing wears me out...

    i cant afford all the test anymore, and trust me i have had ALOT, put together 1 1/2 yrs physical therapy id say or more...its not like i dont try..ive been sick since 2005 and it keeps getting worse, im so hoping for a plateau {sp?}

    the pacing has helped some, and i no longer force myself to do all the shopping and over do it, the morphine helps me do things some like taking walks....it is just so crazy how wiped out i will be after doing anyting...the mirgranes worse, memory short term, pain worse...i just want it to stop...
     
  9. Bob

    Bob

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    Hi hurtingallthetimet,
    Sorry, I made some assumptions when I wrote my post...
    I assumed that you haven't been ill for very long.
    It's really tough to deal with, isn't it.

    In my experience, the more you can rest, and the less you can feel guilty about it, the better.
    But I know if you've got family duties then it's impossible to care for your family and rest enough.


    If you've got CFS/ME, then tests often come back either normal or sub-clinical.
    In the UK we just don't get any tests at all, apart from a few basic ones like thyroid function.
    Once they come back normal, then it's just a case of managing your life, and your symptoms, the best you can.
    If your tests keep coming back normal, then is there any point in continuing to pay for more?


    Do you mean you've undergone some kind of physical therapy?
    Do you mean like Graded Exercise Therapy?
    The PACE Trial proved that stuff like that doesn't work, and we know that CFS/ME reacts negatively to over exertion.
    The most important thing, in my experience, is to tune into your symptoms, accept them for what they are, and to plan your activities accordingly.


    You might need your pain meds, but in my experience, harsh medications can be very counter-productive for ME. ME bodies are very sensitive to stimulation, and toxins etc. And pain meds can also mask your symptoms, meaning that you aren't aware of your limitations. So they can in fact be rather dangerous. If you have ME, then it is reactive to exertion, so the worse thing for ME, is to ignore your symptoms, and your limitations, and to push on regardless. It's only when I stopped doing this that I started to stabilise. Using pain meds as a chemical crutch will not help you heal or stabilise.

    It does require a massive change in lifestyle. Maybe you could sit down with your family, and discuss how you could plan to lift more burdens from your day. Planning to do that now, for a few months at least, might lead to a better outcome in the future. If I have one regret about how I managed my illness, it's that I didn't learn how to do 'nothing' at a very early stage.

    Best wishes.
     
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  10. currer

    currer Senior Member

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    Bob is right in what he said, that is my experience too. But I know that if someone is a mother they rarely feel able to rest enough.
    I think you are going to need to do some real talking with your family so that they understand and can help you more.
    You need proper rest, and that means rest without worries to do with family responsibilities. If you have money for tests, why not use it instead to pay for help? Get someone else to drive the children.?
    You ought to pick up once you can rest more.
     
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  11. Bob

    Bob

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    Yes, they were my thoughts as well... If you can afford to get some outside for a while, you might find it invaluable.

    You might not necessarily see any improvements early on, but you might at least stop getting worse, to begin with, leading to stabilisation and possible improvements in the long term. That's been my experience.
     
    justy likes this.
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    :) It can get better for sure. Finding out what the causes are and correcting them with supplements and diet, getting sleep after things are working better all helped me. Good doctors that use supplements and not meds. to heal and know the tests to take and how to read them. These were what I needed.
     
    justy likes this.
  13. justy

    justy Senior Member

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    I couldnt agree with Bob and Curer more. I used to think i couldnt rest anymore than i did, but in the end i couldnt afford not too. I tried out aggressive resting therapy - bed rest and doing nothing other than taking care of my own physical needs - my husband just had to take up the slack, otherwise i would have ended up completely bedbound. I paced very very strictly - at first i felt worse for a few months, but gradually over the past two years i have made very good improvements.
    Take care, Justy
     
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  14. sianrecovery

    sianrecovery Senior Member

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    I dont have an answer, I just wanted to send you a hug. Hope is the one thing at the bottom of the box left when Pandora lets all the other stuff fly out. You can heal. You can. I dont mean cure, I mean lovingly accept yourself as you are.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I know that you have mentioned that you are out of money for tests--yes, very understandable! Just to note, if all your tests have come back normal, it is very likely that your doctor has not been doing the right tests--just saying this for the future if you find that you can pursue testing again.

    The tests that most doctors are aware of will come back normal. But some of the very specialized tests that most doctors don't even know about, are likely to come back very abnormal. At least this is my experience. When I went to a doctor who sees only ME patients and knows the kind of tests that are likely to reveal some of the thing that are wrong, most of my tests came back abnormal.These are not tests that you can get at any of the "big" labs, but at labs that specialize in tests for gut-neuro-immune illness.

    But if I showed these tests to most doctors, they wouldn't even know what they were. Very sad and frustrating!

    Sushi
     
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  16. Tammy

    Tammy Senior Member

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    Sushi..........you are so right about the tests. I remember the tests that my cfs specialist did back in the 90's............My general Dr's didn't even know they existed.....
     
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i second what sushi said. if u can i would get a lymphocyte sub set and maybe an NK function(not numbers)test, maybe some viral tests for ebv/cmv/hhv6. these tests can help validate how you feel and maybe your doc might take you abit more seriously too.
     
  18. Bob

    Bob

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    If low on funds, I'm not sure if getting blood tests to validate CFS/ME is a worthwhile use of resources, because there is no medical treatment for CFS/ME, based on any blood test results. Unless I'm overlooking something? Obviously, if there is something like a separate thyroid disorder going on, then this would need to be treated, but things like that will hopefully have been tested for already.
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If viral tests for ebv/cmv/hhv6 come back positive and lymphocytes are up or even down below range that can indicate that these viruses are causing you problems and antivirals can be of help. the validation also may help your doc to treat you better then being a hypochondriac if thats the case, even if its just meds to help symptoms, it all go's along way.

    cheers!!!
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    These tests have helped my doctor a great deal in putting together a protocol that is helping. Knowing what some of the "enemies" are, is a step forward in treatment--even if it isn't a cure. A lot of these abnormal test findings point to things that can be addressed and every little bit of normalizing of body function helps.

    Best,
    Sushi
     
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