The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What are the long-term effects of CFS?

Discussion in 'General Symptoms' started by Hope123, Jan 9, 2010.

  1. kaazoom


    Don't mention the goldfish!!!!!.....Too late - I've had a relapse!
  2. kaazoom


    Just for those who don't know what the joke is, here is the video in question. My apologies to those who have had this inflicted on them before!


  3. paddygirl

    paddygirl Senior Member

    Flaxseed for dry eyes

    Hi Mithriel,

    Hope you get to read this as your original post is quite old. I read something recently about someone who had dry eyes for 20 years due to a laser eye op. They tried milled flaxseed with great results. By the way, it should be milled or blended to improve absorption. Many companies now make sealed bags of mixed seeds or just the flax. I heard once too about using cooled chamomile tea to bathe eyes for relief.

    best of luck
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi. I was diagnosed with CFS 21 years ago (Holmes 88) but I may qualify for ME when I lose control of my symptoms (I am now usually successfull at suppressing most symptoms, but not fatigue and lack of energy or sleep problems). I was sick enough to cause problems working since 1985, but I can trace symptoms back to 1968 when I was unconscious for a week with measles encephalitis.

    I developed type 2 diabetes after my CFS diagnosis, but it is atypical (eg. low glycosylation despite high blood sugar) and includes acute hypoglycaemic swings if I forget to eat. Memory has become a problem as well. Most of the pain and flulike symptoms I can suppress (most of the time).

    I have obstructive sleep apnoea that doesn't respond to cpap, because I also have non allergic rhinitis that medication wont touch.

    About twelve years ago my insomnia changed to profound circadian disturbance. This has since become a serious feature of my illness, and now I sleep when I need to, with my sleep time moving around the clock. I used to fight this, but my fatigue was so much worse to no good effect that after some years I stopped fighting it. when I try to function during my sleep times my orthostatic problems are much worse. One time I passed out three times on the same twelve steps before I made it to the top - to the sound of jeers from laughing teenagers. I also become so mentally dysfunctional that I could see people treating me as though I were heavily stoned or drunk, and on one occasion treating me like I was deaf - while I could hear well enough, my brain wouldn't comprehend the words.

    When I am tired I become functionally blind occasionally. I can see what is in front of me quite clearly (although blurry eyes are a problem sometimes) but my brain wont interpret what I see. Reading at this time is impossible - its just squiggles on my computer screen.

    For nearly a decade I had severe bronchospasms for the slightest thing, including mouthwash. I have even not been able to breathe for up to five minutes, but fortunately as a CFS patient I have always been able to hold my breath a long time - I don't seem to need as much oxygen, and used to be able to hold my breath for 5 minutes without feeling uncomfortable. This symptom has receded in the last couple of years.

    In the last ten years I have developed peripheral neuropathy, although I doubt this diagnosis. The skin on my feet is shredded and perpetually bruised, and my feet FEEL numb, but are actually hypersensitive. This is associated with swelling of areas of my feet that I suspect are lymph nodes - I think there is direct pressure on the nerves. Since I developed this problem I have fallen over a few times - not from OI (done that thousands of times) but because I can't balance on my feet.

    Last year I had a hemangioma cut from my earlobe (think benign vascular tumour). The disturbing thing is this kind of benign tumour is associated with lymphoma and leukemia, neither of which I have been diagnosed with.

    There are many many other things but my memory suppresses them, and I only remember when they come back. Many of these I regard as normal CFS symptoms, so they aren't important to this post anyway. Dan Peterson has a paper coming out (don't know when) that tracks long term patients, and when this arrives we will have better information. De Meirleir had a paper that looked at very severe patients (not quite the same as long term) and found that many abnormalities become easier to spot with increasing severity of the illness.

    If anyone is interested I can discuss what I think is happening with long term vascular changes, but this is all hypothetical so I wont discuss it here.

    Best wishes, Alex
  5. klutzo

    klutzo Senior Member

    I've been sick for 24 years. I also have Fibromyalgia and Stage IV Lyme Disease. I believe I have had Fibro all my life, and got Lyme after the CFS. The CFS is what knocked me out of the work force and out of life.

    I am one of those whose digestive system no longer works. This is called exocrine pancreatic failure and reduces life span by 20%, even when other illness is not present. More than 95% of my pancreas is not working, and as a result, I must take 240 pills per month to be able to eat, and the drug costs $900. The cheapest drug in this class costs about $700. A company rep is giving me all her free samples each month, through the Medical Assistant at my GI doc's office. Otherwise I would die slowly and horribly. I pray she never leaves her job!

    Dr. Sarah Myhill and others think this pancreatic failure is the result of viral, parasitical and bacterial infections all present in the bowel at once, that somehow turn off the pancreas so it no longer makes enzymes. They offer a 6 week treatment: 2 weeks of quinine based anti-parasiticals, followed by two weeks of antibiotics in the Mycin family, followed by 2 weeks of antivirals. Since I am deathly allergic to the first two of those, I just keep taking the prescription enteric coated enzymes. OTC enzymes do not work on a serious problem like this, as 90% of them are destroyed by stomach acid. The enteric-coating, timed-release and Big Pharma's greed is what makes the drug so expensive.

    I also have developed cervical degenerative disc disease with radiculopathy, lumbar stenosis, piriformus syndrome, osteopenia, nystagmus, hypothyroidism, vulvar vestibulitis, paroxysmal supraventricual tachycardia, occassional atrial fibrillation, 3 leaking heart valves, gastroparesis, gastric metaplasia, bile reflux gastritis, lost my gallbladder, rectocele, cystocele, reduced bladder capacity with an average of 16 urinations daily, extreme intolerance of temperatures both cold and hot. I am only functional at 77-78 degrees. I have no short term memory and am starting to get an altered long term memory, swollen legs and feet, hypermobile joints, adrenal fatigue, secondary depression, brain damage rated severe, fibromyalgia, multiple chemical sensitivities, severe insect and pollen allergy, irritable bowel and bladder, paraesthesias, costo-chondritis, metabolic syndrome, a torn left supraspinatus muscle in my shoulder, and shoulder bursitis on both sides, tennis elbow on the left side, obstructive sleep apnea, labile high blood pressure, and a permanent yeast infection on certain areas of my skin.

    The only things on that list that may be genetic, not due to CFS, Fibro or Lyme, are the low HDL part of my metabolic syndrome diagnosis, since one side of my family all have very low HDL, and the hypermobile joints, which started when I had Rheumatic fever as a teenager.

    I think if you look around, you should be able to find the research of Dr. Byron Hyde, who followed over 1,000 of his CFS patients for 25 yrs. and publishes a retrospective, noting the most common causes of death. His top 3 list was:
    1. Suicide
    2. Heart failure
    3. cancer

    Somewhere, I saw a similar list by Dr. Paul Cheney. His top 3 list was:
    1. Heart failure
    2. Suicide
    3. Pancreatic failure

    I also saw a list of cancers we are more likely to get by Dr. Peterson a long, long time ago. If I remember it correctly it went as follows:
    1. Thyroid - 40,000 times more than the general population.
    2. Non-Hodgkins lymphoma - 40 times more
    3. Burkett's lymphoma - can't remember the numbers
    4. Salivary gland cancer - can't remember the numbers, but I had one case in the support group I used to run.

    This last list is deceptive in that thyroid cancer is very rare, and usually curable. A 40 times greater risk of non-Hodgkins lymphoma is really a much bigger risk than the 40,000 times greater risk of thyroid cancer, which amounts to only about 7% of us. Since non-Hodgkins lymphoma is widely thought to be an environmental cancer, this may possibly imply some things about CFS.

  6. leelaplay

    leelaplay member

    klutzo, you always astound me. You are so sick, and yet you spend the energy to share this comprehensive post with us.

    thank you thank you

    I bow, no I prostrate myself to you

  7. ahimsa

    ahimsa Rarely on PR now

    Paul (Kazoom) - thanks for posting your video, I had not seen it. You have a wicked sense of humor! (and I mean that in the best possible way!) Good job on the video. Ah, if only it were so easy to blame all our medical problems on repressed childhood trauma. If only a little psychotherapy would make it all go away.

    But it's so great to see that after all that we have lost with this d*** illness we can still try to have a sense of humor!

    Sending you some :hug: HUGS :hug: to thank you for making me smile. And shedding a tear in memory of poor, lost Eustace. :rolleyes:
  8. bizteach

    bizteach Guest

    I have developed a lot more pain since having CFS. I have now been diagnosed as having FM as well, which I believe is quite common. However I also think that as I was a very active person prior to CFS it is now my bodies way of reacting to no form of exercise at all and thus stiffening up and getting weaker in the muscles. I do worry about my lack of cardio vascular exercise. My symptoms have changed since first having CFS as well and from what I have read that gain seems quite common. of course my self esteem has hit rock bottom and whereas I was a very strong character with loads of confidence, not no more, I cry at the stupidest things and it really bugs the hell out of me.

    Hope this helps

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