Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Declining rapidly.

Discussion in 'General ME/CFS Discussion' started by nikefourstar, Jan 20, 2017.

  1. nikefourstar

    nikefourstar

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    Im so sick today that I can't even move from my bed, everything just feels like horrible. In the last 3 months I went from moderate to severe to very severe. I wouldn't even be able to brush my own teeth right now if I had too. I'm so scared I can't do this anymore. I will be completely helpless within the next month or two.
     
  2. SueJohnPat

    SueJohnPat Sue

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    I am so sorry this is awful I am not sure we're you live. Two years ago in Jan and Feb I reached my low point with Cfs. . Mine did improve usually in the spring. I was never severe if you need help maybe you could post in the community forum . Perhaps there is a crisis line if you have no one to help you and you need care. I often would get scared about this myself but was never severe.
    I am in Nj by Philadelphia Pa. My husband is at home with me . Pm me if I am close enough to give you any practical help.
     
    Little Bluestem, erin, MeSci and 3 others like this.
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Dunno if issue for you, but for me and others cold damp.weather, i.e. Winter, makes it worse :/
     
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  4. Dainty

    Dainty Senior Member

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    Do you have any plans to see a doctor for this in the near future?
     
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  5. Timaca

    Timaca Senior Member

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    Has anything changed in your environment the last 3 months? (Food, cleaning products, anything?) Maybe something has triggered this.....

    For me, different foods can make me worse, and chlorine is a real problem (I can go from feeling fine to not being able to function at all after spending 15 minutes in a chlorinated pool). And yes, I also have viral reactivations that leave me much worse off.... I can't control those but I can control the food I eat and the amount of chlorine I'm exposed to so I do that...

    Hoping you find some answers.....
     
  6. mrquasar

    mrquasar Senior Member

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    Do you live alone or do you have anyone who could come help you? Any family that live nearby? I agree with the other comments about searching for triggers. I've also had periods of rapid decline, one caused by mold exposure and the others by food triggers I wasn't even aware of. Luckily now that I've identified the triggers I've been able to eliminate them and am recovering, slowly.
     
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  7. mrquasar

    mrquasar Senior Member

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    But in any case if you are getting worse you need to plan for the worst-case scenario. There are energy-saving ways to get your daily meals (frozen meals, powdered meals, etc.) and wash yourself (baby wipes) if it comes down to it. And if you really fear you'll be incapacitated, you need to find a caregiver. At the very least a family member or friend who could come visit for 10-15 minutes to help you with the basic necessities. It's better to plan ahead than to be caught totally off guard, in case you need it.
     
    Last edited: Jan 20, 2017
    helen1, MeSci, PatJ and 2 others like this.
  8. Sushi

    Sushi Senior Member Albuquerque

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    If you feel this is true, then it might be time to look for a doctor. Since you don't have a diagnosis no one can even speculate about what is going on.
     
  9. mrquasar

    mrquasar Senior Member

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    Another option if you need assistance would be to contact a local church. I'm sure some members would be willing to help a severely disabled person a few times a week. I know it's a big step to ask for that kind of help but if you have no other options, please consider it.
     
    belize44 likes this.
  10. SueJohnPat

    SueJohnPat Sue

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    I eventually discovered mold exposure was a big issue. My bad downturns in winter got me into thinking this. Lisa Petisons book describes that even if your home is good ( mine is good now) There are a lot of people who react to " mystery" toxin which is usually bad between Nov and Febuary. You can read Paradigm change website. Sotty font want to change the subject. Totally agree prepare for the worst .
     
  11. ash0787

    ash0787 Senior Member

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    I said a few days ago, your situation doesn't seem like typical CFS as the timeframe scale is different and that you needed to start seeking out doctors to get an accurate diagnosis, living in a hospital or something.
     
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I would second that. We are all here for you, but you do need to start getting to the bottom of your diagnosis.
     
  13. belize44

    belize44 Senior Member

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    I have many instances of this disease being blamed for other factors in our environments, so I agree with others here. For instance, I became very weak, had trouble breathing and began coughing and sneezing a lot. Turns out the tenants who occupied our apartment before us used massive amounts of scented laundry product, the smell of which had permeated the carpeting and polluted the ductwork. So when running the heat, the smell would just fill up the place. We aired it out as much as we could, ran an air purifier, etc. But the point was that I was blaming CFIDS for my symptoms when in fact it was being aggravated by an environmental issue. Please seek medical help for your symptoms!
     
  14. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @nikefourstar It sounds like it's time to get a battery of tests. Explain to your doctor that you are not able to travel from doctor's office to doctor's office over a period of months or years. Your doctor may then want you to go to the hospital since the testing there is available all in one place there. I would urge the doctors to check your levels of magnesium, B vitamins, minerals and other nutrients, as deficiencies can prove fatal. You also need nutrients often in excess to fight infections and disease.

    Some nutrient testing can be done by mail from home with assistance from Naturopathic Doctors who are more up on nutrient deficiencies than MDs.

    Ask for documentation of your lab and test results. Sometimes you can get good online communications with doctors and hospitals, sometimes not. And some doctors may not be on the same communication forum and thus require written copies from you.

    Also think strongly about who you want to act as your legal designee to handle your medical communications and affairs. The legal forms are available online or through your doctor but need to be signed, witnessed and notarized.....and your doctors and hospital need copies.

    The privacy laws like HIPPA are such that the medical establishment cannot disclose any medical information to anyone unless they are given legal written authority by you. They will often only allow direct family to visit you. You must designate who is allowed what information and also for financial matters. If you do not have someone experienced to handle this look up a good fiduciary - someone with good credentials, not some thieving vulture.

    Not something you want to hear I'm sure. Perhaps someone older you know will have more familiarity with this since they have gone through such scenarios with the seriously ill. If not, there are those who do this for a living, and they may be less emotional and more experienced in handling these matters than a family member who is likely to be overwhelmed already with work and other duties.

    Hang in there. We are pulling for you.
     
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  15. Joh

    Joh Inactivist

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    Hi Nikefourstar,

    Sorry you're feeling so bad.

    Just to make sure, that we all mean the same with "very severe": I believe, with ME "very severe" means to be tube-fed and "severe" means to be completely bed-ridden and not to be able to go to the bathroom. For example, I'm bedbound 23 hours a day but can still walk short distances and consider myself "moderate".

    Hope you find a doctor soon.
     
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  16. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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  17. mrquasar

    mrquasar Senior Member

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    I should also mention that if you're really strapped financially, you should be able to find charity or community clinics in your city. I found one last year and got a pretty thorough battery of tests done (they all came back normal, for what it's worth). The total cost for the doctor visit PLUS all the lab work was $80. I got very, very lucky in finding this place.
     
    ash0787 likes this.
  18. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I've read most of your threads and I really think you need to get to a hospital as soon as possible.
    ME is usually the last diagnosis that doctors give after all other tests have come back normal. Even if the patient doesn't have ME.

    You could have a disease that's causing permanent damage to your organs for all you know and phoenix rising can't test for that.
    How are you feeding yourself and getting food? Personal care? Are you willing to let yourself get to a stage when you can't do that at all before you get help? I'm not trying to be sharp but I honestly don't get posting all of those threads when you really need to get basic tests done first.
    You'll need a:

    - brain MRI
    - antibody tests to check for RA, lupus and all of the other common and rare immune disorders
    - Lyme and other viral and bacterial antibody tests
    - Mineral and vitamin Deficiency tests
    - Protein deficiency tests
    - hormone level tests incl cortisol
    - Complex physical examination
    - Psychiatric examination (yes that too!)
    - And more depending on your specific symptoms

    The internet can only help so much. Please be proactive for your own safety! Stay strong.
     
  19. arewenearlythereyet

    arewenearlythereyet Senior Member

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    specifically some of the key ones you need to rule out
    MS
    Coeliac
    Pernicious aneamia
    Regular anaemia
    Hypothyroidism
    Rheumatoid arthritis
    Addisons
    Diabetes

    I think there is about 40 potential diseases to rule out before you eventually get a diagnosis. And you have to wait 6 months anyway. The doctor can take you through all these. Let us know how you get on?
     
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