New Board Member--I have had CFS for 14 years now

Discussion in 'General Health & Wellness' started by hermod30, Jun 20, 2010.

  1. hermod30

    hermod30 New Member

    This post is just to introduce myself to the others on this board, as I hope to both acquire and offer support to others who suffer from a deblitating chronic illness.

    As my subject line said, I have suffered from CFS for 14 long years now. I have tried numerous treatments, including the vitamin intake suggestions of Dr. Jacob Tietlebeum. I will never give up hope that there is a solution to this complex disease, and that I am not doomed to suffer from its bone-crushing symptoms for the rest of my life. However, I am not inclined to believe that vitamin supplements are the answer to this disease, despite many people who claim they have helped them. Vitamins have never helped me. I have noticed that regular aspirin will take the bite out of certain flare-ups, but its usefulness is unreliable. I am now just recovering from my latest flare-up (it lasted about two grueling weeks). I have done my best to adjust to this disease, but I am unable to work outside of the home, and as a writer with skills in that area, I have tried to find employment through this means. I haven't proven totally successful yet, and one of the worst things about this disease is how it has robbed me of my ability to make myself financially solvent. My means of making money are greatly limited, and I am hoping to break into writing full time in the future.

    Of course, writing entails a lot of mental exertion, and it can be quite trying on me to write for lengthy periods of time, especially when I am in the midst of one of those devastating flare-ups. My ability to travel and engage in many activities that I enjoy have been greatly curtailed by this horrid disease, and everytime I do travel I have to worry about being hit by one of those flare-ups that we CFS sufferers live in mortal fear of. I want my life back, and I have seen how various unscrupulous individuals prey upon those who suffer from chronic illnesses like CFS that are poorly understood so as to milk us for what meager amounts of money we have. Many of us are so desperate for relief, often after long periods of interminable suffering, that we are sometimes willing to jump at straws, and try untested and unproven methods of treatment that are expensive. This is unfortunate but understandable when one considers that mainstream medical science has been so slow in gaining an understanding of this terrible illness, and has yet to provide us with any good answers or solutions. I am seeing a psychiatrist for clinical depression, and seeing that my CFS is a major contributor to my depression, he has prescribed me medications such as Provigil, which is designed to treat fatigue-causing illnesses like narcolepsy. It didn't help at all, so I stopped the drug. Most recently, he has prescribed me another such drug, Nuvigil, and I have yet to try it and see if it can do anything for me. I will keep you all posted on that. My hopes aren't very high that it will do anything for my severe and constant fatigue, but I am glad that my doctor is at least trying to help me, and understands how difficult it is to deal with such a debilitating disease where no one can offer me any answers. My primary care provider has never been able to offer me any suggestions other than low-conditioned exercise, but that is very touch and go, as it tends to help some people who suffer from CFS, whereas others are struck down by post-exertional malaise when they attempt to exercise even a small amount.

    In 2005, my symptoms escalated to a point where my life became a total nightmare, as I was suffering from fatigue and many other strange symptoms (including a nasty panic attack and shortness of breath) that I had never suffered before or since, and this particularly horrific flare-up lasted for five grueling months. I never want to go through anything like that again, but I have to face the fact that it's always a possibility.

    Nevertheless, I refuse to let this disease beat me. I still have a life, no matter how much its quality has been denigrated by this baffling and horrible condition. And I am going to do my best to live this life to the fullest. Nevertheless, I still curse the universe at times for inflicting this disease upon me, and I often demand that I want my old energy level back. I was highly active in exercise and the martial arts until this disease came along 14 years ago and took all of that away from me.

    I live in the Buffalo, New York area and I am hoping to eventually locate a doctor in my locality who specializes in CFS and can work with my primary care provider and psychiatrist to help come up with a treatment regimen with me that is backed up by sound research and is not just grasping at more of those proverbial straws. I do not plan to have this disease for the rest of my life, but I will continue to fight it and remain optimistic for as long as I continue to suffer from it.

    Chris
  2. rockgor

    rockgor Well-Known Member

    Welcome to the board. Let me give you a tour. You can find the board rules
    in the upper right hand corner.

    In the same location you'll find a list of the various boards on this site. I retired 5 years
    ago. The board has been therapeutic for me. It's also my only social life.

    You might want to visit the chit chat board. It's a good place to post about
    kids, work, pets, music, plus this, that and the other thing.

    My depression has been greatly lessened in recent years by taking some supplements
    along w/ my antidepressant. I take Jaminhealth recommended by grapeseed extract
    and vitamin D3. Also wear a vitamin B12 patch one day a week.

    You're right. CFS takes away and keeps on taking. Never stops. Kinda like the
    Energizer Bunny.

    Hope you can find something helpful here.

    Rock
  3. Nanie46

    Nanie46 Moderator

    Hi,

    I wanted to pass along some info to you.

    In order for you to recover from all of your symptoms, you must first find the cause(s).

    It is likely that the cause is infectious.

    Many, many people here with fibromyalgia or chronic fatigue syndrome diagnoses have found out that they had a chronic Borrelia burgdorferi infection (Lyme) along with common coinfections like Babesia, Bartonella and Ehrlichia.

    A chronic Borrelia burgdorferi infection can cause fibromyalgia, fatigue, insomnia, depression,etc.

    Babesia, often found with Borrelia burgdorferi, can cause overwhelming fatigue and post-exertional malaise among other symptoms like air hunger(shortness of breath) or night sweats.

    Bartonella can cause swollen glands, anxiety, panic attacks and mood swings, among other symptoms.

    Please take a look at the info in this booklet. It contains a great symptom checklist.....


    http://www.lymepa.org/Basics2007v1.2Rev.pdf




    Here is a paper written by a Lyme expert and it also has a great symptom checklist on pages 9-11 and info on Babesia symptoms, Bartonella and Ehrlichia symptoms on pages 22-27...



    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    Unfortunately many people have had a "Lyme test" which usually turns out negative and their Dr mistakenly rules out Lyme that way.....which is very wrong.

    Lyme is a complex bacterial infection that can cause every symptom that you mentioned.

    99% of Dr's do not know how to recognize, diagnose or treat it, leaving most people to suffer forever.
  4. 58doberman

    58doberman New Member

    Hi..I'm also new here. A lot of people, especially women, suffer from vague, unexplained illnesses, and doctors are ashamed to admit they have no clue why one is debilitating ill.
    All my adult life I suffered from different illnesses.
    My young adult life started out with very severe panic attacks. Nobody helped and nobody believed me. You don't know what a panic attack is until you experience one. It's absolutely devastating..just having one is aweful, but having them frequently for years can make you think of suicide. And the palpitations..they scare you to death each and every time. I don't know how I survived those years. I became clinically depressed. I stopped working and applied for SS disability. The lady at the SS office said it was about a 100% I would not get disability. I got it for the first try.
    In the meantime I tried to live the best I could but my life was marginal at best.
    By some miracle I found a psychiatrist who finally was willing to give me medications on a continuous basis. That was 19 years ago. I still see him 4 times a year for medication management. He does not think I'll ever be cured and I don't either.
    In '98 some doctor diagnosed me with CHF. It was also discovered I had thyroid nodules. I'm tired all the time, my legs are very weak, I have severe joint pains etc etc.
    I try to give you some advice that might help. I'm a medical professional and not a lunatic.
    First of all CFS does exist..don't let anybody tell you otherwise!!
    Don't exercise, because exercise always made me sick (even before I was diagnosed with CFS). Nobody believed that either, I was told I was a lazy bum. I was already sick for over 10 years when I read a book on CFS..I couldn't believe it. Finally I had a name for my exercise intolerance..post-exercise malaise.
    Don't forget about hormones..you might be having hormone imbalances, or menopause. I thought menopause lasted for about a year..it could last for 15 years.
    Don't take NSAIDs for joint discomfort..they're killers.
    I highly recommend generic Benadryl for sleep and for anxiousness. For $4.99 at Wall-Mart you can by a 100 nights of sleep.
    I rest and read a lot, and never push myself. This crazy world makes you sick.
    I can stay home becuse my husband is a scientist, so we can get by on one income. He is also supportive.
    I'm not optimistic, I'm realistic. Science is nowhere. Don't get all these new meds, don't be a guinea pig. I take generic Tylenol for my osteoarthritis (knees)!
    In the human body everything is interconnected.
    I think all of these symtoms add up to a complex endocrine syndrome.
    Make the best of the functions you do have. Good luck Marti