why are people with cfs just left to suffer?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by suzi123, Feb 11, 2013.

  1. suzi123

    suzi123 New Member

    With no help being offered, I have had no help from doctors they just leave you to rot, my family also just left me giving up, patents kicked me out of the family home luckily I have my partner who cares for me now, if there is treatment that may help why are we not offered it? Where I live certainly I have been given no help at all, I feel I have to just help myself or pray for a miracle
  2. MYsecret

    MYsecret Member

    Hey MicheleK, I live in South Africa where CFS/ME is known to people under the awful misnomer, Yuppie Flu. Most have never heard of it at all or have a very cursory "knowledge" of the illness so I feel as abondonded as you! When I'm so fatigued that I can't do anything at all I feel so insulted $ assulted that nobody even knows enough about this DD to even just care! I'm new to Prohealth but 17 years after being diagnosed, not to ME! Let's hope $ pray that the ongoing research will bring about a cure for all of us worldwide before long. My heart, thoughts $ prayers are with you MichelleK. Warm hugs, MYsecret xxx
  3. MYsecret

    MYsecret Member

    Hey MicheleK, I live in South Africa where CFS/ME is known to people under the awful misnomer, Yuppie Flu. Most have never heard of it at all or have a very cursory "knowledge" of the illness so I feel as abondonded as you! When I'm so fatigued that I can't do anything at all I feel so insulted $ assulted that nobody even knows enough about this DD to even just care! I'm new to Prohealth but 17 years after being diagnosed, not to ME! Let's hope $ pray that the ongoing research will bring about a cure for all of us worldwide before long. My heart, thoughts $ prayers are with you MichelleK. Warm hugs, MYsecret xxx
  4. MsE

    MsE New Member

    I haven't visited this site for quite a while, but I just read your note about being "proactive" and had to send my agreement. Extra protein does seem to help me, too.
  5. MsE

    MsE New Member

    I haven't visited this site for quite a while, but I just read your note about being "proactive" and had to send my agreement. Extra protein does seem to help me, too.
  6. MsE

    MsE New Member

    You have my sympathy and understanding. Doctors don't know what to do for CFS and so many of them just walk away from it. I'm lucky I have a GP who at least tries to help, but he is about to retire. Bummer.
  7. MsE

    MsE New Member

    You have my sympathy and understanding. Doctors don't know what to do for CFS and so many of them just walk away from it. I'm lucky I have a GP who at least tries to help, but he is about to retire. Bummer.
  8. luigi21

    luigi21 Member

    Have you been to any support groups. I go to a fibromyagia one but often these illnesses overlap with eachother so fibro groups are open to cfs and other sufferers of similar conditions they stock cfs literature libraries that ypu can loan until the next meeting. You can find your nearest group on google. If you cant get out there send you newsletters and you can give people in the group a call. Just a thought take care of you
  9. TeaBisqit

    TeaBisqit Member

    Except I have no one now. All supportive family died. The others have left me for dead. And I've got no one to help me.

    My doctor just throws pain killers and muscle relaxants at me. She doesn't know what to do at all.

    There just is no help. I've had to deal with this basically alone for many, many years.
  10. MicheleK

    MicheleK Member

    It is a sad truth that many ME & CFS patients are eventually abandoned both by the medical community and friends and family.

    When doctors are not taught the truth about the devastation this illness brings to our bodies, or even taught that it doesn't exist, except in our minds, they don't know what to do with us. The result is we get shuffled from doctor to doctor or basically just get blown off.

    With our family and friends, they have most likely never come into contact with an illness like this and they too have been fed misinformation mostly by the media.

    This illness is unlike the ones they have seen, such as MS, MD, Parkinson's, etc.. Those illnesses progress to show physical symptoms that an onlooker cannot deny, and which bring empathy once witnessed.

    Unfortunately ME & CFS are mostly invisible. We may have a long list of symptoms we are battling, but the war is on the inside, leaving our outside just looking tired.

    People judge mostly with their eyes first, followed by their ears. If they are looking at us and we look normal to them, and they are hearing through their news sources or gossip that the illness is just being tired or that it is all in our minds, it is no wonder that the many get the wrong ideas and eventually abandon the patient.

    Of course there are many MS, Parkinson's, MD, etc. patients who also get left behind. The world is a busy, fast paced, place. If you cannot keep up then you are more apt to be left behind.

    The new research projects going on are coming up with solid biomedical findings. These sorts of things will be game changers. When there is a medical test or pharmacological breakthrough in treatment, more will begin to beleive. They will have "evidence" in front of them as they do for other diseases.

    Seeing us lose one thing after another in our lives due to having this illness really should be enough for our loved ones to stick close to us in love and loyalty. But it's just not a perfect world is it? It hurts and it's frustrating, but I believe better days are on the horizon.

    Hugs,
    MicheleK
    Godismystrength likes this.
  11. Mikie

    Mikie Moderator

    You have to hunt them down. It's worth it when you find one knowledgable of our illnesses and willing to help. We also have to do our own digging for treatments and supplements which might help. It's a long process but it's better than nothing. Good luck to you.

    Love, Mikie
  12. alyssalyn

    alyssalyn New Member

    It is up to the CFS community to be proactive. Many things are not understood. The tests are not necessarily the tests that will find what's wrong. (i.e back in the dark ages kind of testing).

    Evaluating your lifestyle habits, diet, and sleep, find what makes you feel better, and avoid that will makes you feel worse. Herein is a secret.

    Protein is a huge thing that help people feel better. So are nutritional drinks such as Superfoods or powerfoods.
  13. Saoirse3

    Saoirse3 Member

    We have to take care and sometimes be our own "doctors" with this. After 25 years with this DD I know that 98% of western doctors are useless. The hospital where I live came dangerously close to killing me on two separate occasions and I' not exaggerating. They failed to notice my platelets were extremely low and happily went ahead with a surgery. I almost bled to death and had to be kept alive while platelets were medivaced from Anchorage. The hospital said it wasn't their fault, I should have told them! I DID! Now I am considered "too high a risk" among all the doctors in my small town. I have no choice but to move out of state, because Alaska simply cannot provide for my medical needs.

    Since then, I have done research like mad, finding out what works for me NATURALLY, being careful to start slowly and give it time, adding, subtracting, tweaking and telling my doctor in Anchorage what I need. Just remember, the doctor is working for YOU, not the opposite as they would have you believe. Without patients, they couldn't afford their country club fees! So what if they don't agree with you - educate yourself and bring proof! And bear in mind, what works for me may not work for you at all, supplement wise. But keep on tweakin'!!!

    Soft hugs,
    Stacey
    Godismystrength likes this.