I don't think i can do this anymore - Rant

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Feb 15, 2009.


    LISALOO New Member

    I've had CFS for 5 years, tried everything, and I mean everything and only get worse. Ithink the stats are too small of getting better, and I've since I've tried everything, I would need a miracle to get better. That's not going to happen

    I just don't think i can do this forever, I'm too young at 31 to deal with this 30+ years, even another day seems impossible. I think another day is too much. I'm pretty damn hopeless.

    I'm on antidepressents so please don't suggest them. It's the disease not the depression that is unbearable.

  2. chyrel

    chyrel New Member

    how you feel but you just keep on holding on one day at a time. And do a whole lot of praying to our good Lord Jesus for help in getting through the day. I know that with the fibro sometimes I feel like I just can't handle it another minute let alone another day but I have talks to God and it helps me!! Good luck and God bless you.

  3. SpecialK82

    SpecialK82 New Member

    I understand how you feel, I have felt it myself. It seems that we are living a nightmare that we cannot escape. But, there is so much for us to look forward too - there will be a cure for this DD, it's just a matter of when.

    We all need to hang on together and we'll get through this. And then maybe one day we will all feel so good after a treatment or cure is found - we'll meet somewhere and have a big celebration!

    I am praying for all of us, take care of yourself.

  4. TeaBisqit

    TeaBisqit Member

    I have had this disease for eighteen years. I was twenty-one years old when it completely disabled me. I'm still here, and I'm still sick.

    It is still a bit too early for you to tell if you will get better.

    Hanging in there is a choice. I could tell you the truth, but then everyone would yell that I'm being depressing. So what I will say is, you need to find a way to come to terms with having it. And keep on hoping something will come along to help.
  5. Beadlady

    Beadlady Member

    I'm going through a really bad time with my Fibro and depression. I have good and bad segments of time too.

    I hate feeling like this too--the depression right now is worse than anything--downright scary to me.
  6. hopabout

    hopabout New Member

    Yes you can, but I know its not easy at all. I am one that has been here for 30 years and some days seem so hopeless. I am so so sorry you are sick.

    Let me tell you a few things that has helped me and some things I have learned about our illness. I have FMS 1981, CFIDS 1989, Celiac, 1996, Thyroid disease2006 but probably all my life.... and I grow tumors.... 17 to date. So, I have been right where you are now.

    The first thing I learned to do ws stay warm. Any form of cold on any part of my body sent the wrong messages to my cells. That is hard to do with weather during winter months.
    (I went to extremes finally, and moved to the tropics... and walked out of a wheelchair)

    Second, I removed everything white from my diet. Hard to do.... you bet ya! But, the alternative was harder. So, veggies became my friend and I would make big pots of soup or big salads and put nuts and fruit in them to make it seem special. It took me a while to learn I had celiac but after I cut all that bread and oatmeal out.... wow did I feel better. I study genetics so I learn about cows and dogs and even fruit flys. I learned that cows with fibromyalgia symptoms did better without any grains...the glutens, wheat, barley, rye and oats. Wow... what's good for the cow should be good for me, what a change in my life.

    Second and even harder was milk.... nope, not mama's milk, that baby cows milk that they force on us. Its got lots of stuff in it that make us sick. My main meals were all about cheese.... fine but it wont metabolise and makes me really really sick. Later I had tests that showed me that was indeed happening. Wow.... jsut some food choice changes.

    I learned to make green tea and camomile tea my main drinks. I learned that soda, coke, pepsi, etc. was robbing me of nutrients I must have each day so I cut them way down... I have not quit... Also, I learned from a bout with Interstitial Cystitis that citrus fruits were causing me problems. I also learned in studying that those fruits will bring herpes out in the open. Well, hey, those little chickenpox and fever blister viruses that live way deep inside of us need to stay way deep inside. I cut out citrus and put them in a calmed state.

    So now.... for breakfast, I began using only protein. Meat... a large grill chicken.... something even sausage, an egg or two, only protein. Coffee is bad for our muscles but hey.... I need my early morning cup... So that is breakfast for me. Wow, did I do better each day.

    Then, as years went on I learned that the triggers to annoy my adrenal glands were toxins like cigarette smoke, cleaning agents, people's perfume, things that seemed to give me allergic reaction or that was unpleasant to me. EVEN loud noises and loud music.... so little by little I made sure those things were not around me for long. The more I practiced that, the better I got.

    Our cells are not corrrect. It is real likely that a toxin in the ocean has set us up. This toxin may be responsible for many of our problems.... can we get it out of our bodies? I don't know. Read Dr. Shoemaker's neurotoxin report on this website. I am doing his protocol now. I am praying it will do something for me. The toxin is one thing from certain fish, though it has been discovered in tuna and in fish tanks ... its how our already broken adrenal glands are handling this toxin that is the issue. They really can't. So, they get to causing some of the problems around all the cells in our body in allowing sodium in and out of them properly... when that happens, we get all un ionized.... like a broken electric circuit.

    When weather comes, the clouds have positive electricity in them..... you are too positive... that salt is not where its suppsed to be because of toxins in your kidneys.... so.... you have to sweat out the cold fronts.... North Easters and anything that brings nasty cloud cover... once clear, you will feel better instantly.

    Its not about depression, but it sure can cause it ! I hope some of the things that has helped me, will help you.

    Good luck. Come to chat sometimes. I am hopabout.

  7. GKTLA

    GKTLA New Member

    You are not alone. Without the internet we would all think that we were really crazy but obviously with so many ill something is going on. I am 35 and always wanted to have children. Not possible at this time. I also had a good job, got my master's, had friends, etc. The job is gone, the degrees collect dust, and the friends are gone. The money goes fast too. I've tried everything...even when the things I was trying made me feel worse I kept trying. IT IS CRAZY. And all the frigging theories (I mean really, aren't there about 100 of them now) can drive anyone batty. Do this, don't do that, and on and on.

    I have been house-bound/bed-ridden going on 4-5 years now. My butt hurts literally from being on it so much. Pitiful. If I stop and really think about this NIGHTMARE I have a panic attack and start sobbing.

    But, there have been times where I've felt better and almost normal. I wanted to get a part-time job last year about this time before the next relapse. It does go in cycles and you fill find something that works to some degree at some point.

    I am starting Isoprinosine tomorrow and hopefully Xyrem in the next few weeks. I also just started Oxymarine (sp?) and have a prescript. for an oxygen tank to start oxygen therapy.

    Do you have a doctor that is really knowledgable about CFS?

    I know it's almost laughable at what we are going through. But I do believe that researchers/scientists are finding out more and more about these illnesses every day now. That definitely was not the case a few years back.

    LISALOO New Member

    Sorry you're also young and ill

    I've tried :
    sleep studies
    candida diet and antifungals
    colon hydrotherapy
    allergy diets
    pacing and meditation
    FFC - 2 sites
    about $10000 worth of tests to see if I have viruses, bacteria nutritional deficiencies, etc.
    I've remove all celiac baddies, and sugar.
    I've been tested for thyroid, adrenal disease, cortisol, everything.

    I've tried so many more things that I just can't list, not even an improvement. About 300 supplements (including oxymatrine).

    IVIG treatments, god what else, everything.

    After this long and not even a 5% improvement on anything, I think I'm pretty damn hopeless. I wish I could go back and rest the first year.
    [This Message was Edited on 02/16/2009]

    LISALOO New Member

    I can't come to terms with it. Without health, you have nothing, and I can't spend the rest of my life without health.
  10. munch1958

    munch1958 Member

    I've been at this since 1981 and yes it is very frustrating. It wasn't until I turned 49 that I figured out what my problems were. I'm now 95% recovered and sometimes get sad that so much of my life was wasted.

    Most of this was self taught because I realized the diagnoses and treatment that I got from the FFC were NOT correct. If your diagnoses were based on your labs and the doctor is wrong then you get the wrong treatment. I'd be happy to look over the labs you got from the FFC or steer you to some doctors in Chicago that might help you. You can contact me thru Lymezone.org

    I now have a team of excellent doctors and have gotten well. I'm sleeping 9 hours every night. I've had insomnia issues since 2nd grade so this is amazing. I have no muscle or joint pain. No headaches. No strange sore throats. No fatigue.

    I've tried almost every antidepressant there is but NOTHING helped me. It wasn't until I got on growth hormone, heparin and methylcobalamin that I had a major turn around.

    The Detroit FFC doctor didn't even consider me as a candidate for any of this because my IGF-1 and my Lyme test was negative even tho I have many positive bands. My IGF-1 was hovering around 86 or 88 which is the bottom of the Quest scale. This was an indication that I needed growth hormone. All the FFC wanted to do was sell me more IVs and more supplements which weren't the answer.

  11. GKTLA

    GKTLA New Member


    what are your main problems? sleep, aches, etc? Do you sleep okay each night for about 9-12 hours??

    could you list them in order of what you would fix?

  12. Nanie46

    Nanie46 Moderator

    Listen to munch1958. Have you had an Igenex western blot?

    LISALOO New Member

    My problems

    1 fatigue
    2 the inability to do anything without crashing
    3 muscle pain after crashing

    I sleep 9-10 hours per night, I fall asleep well, stay asleep well, whether I get stage 4 sleep, unknwn (I take herbs and klonopin)


    LISALOO New Member

    41 IND
    58 ++

    34 IND
    39 ++
    41 IND
    66 +

    However, I've tried cowden for a month, didn't feel worse or better (stopped because the alcohol in the drops were bad for my interstitial cystitis), was on antibiotics for a month (quit due to yeast even though I was on antifungals and candida diet), didn't feel worse or better. Don't remember a tick, I am the least outdoorsy person known to man.

    munch - I registered for your site but am not active yet.

    I got sick in March in Wis, definately not outside. A lot of the Lyme specific symptoms I don't have.
    [This Message was Edited on 02/17/2009]
    [This Message was Edited on 02/17/2009]
  15. Nanie46

    Nanie46 Moderator


    Your Igenex western blot results are very suspicious for lyme.

    Dr Burrascano says in his 2008 Diagnostic Hints and Treatment Guidelines that you only need to see band 41 and one species specific band 18, 23-35, 31, 34, 37, 39, 83, 93.

    My LLMD told me that IND was like a fingerprint.....it doesn't matter how dark or light it is...it's still a fingerprint.

    It sounds like you started to treat for lyme but stopped. Did you see a LLMD? Were you on lots of high quality refrigerated probiotics containing bifido and lactobacillus?

    Which antibiotics were you on?

    I'm sure you know that many people don't remember a tick bite or a rash. Also, there are so many possible symptoms of lyme, that different people have different presentations.

    If I were you, I would go see a well respected LLMD. You are suffering way to much and it's very apparent that it is not working for you.

    You should let a very knowlegeable LLMD decide if you have lyme/coinfections or not.

    LISALOO New Member

    Thanks for your response.

    It's a 9 month wait for a LLMD around here. I was seeing someone who knew about lyme, hence the antibiotics (doxycycline and erithromycine(I think)). Yes, I was taking millions of good probiotics, prescription antifungals, anti-candida diet nothing stopped the yeast. I felt no better or worse on the antibiotics though. So with the side effects, the dr took me off the antibiotics. And that's all he had from me.

    That's why I tried Cowden's protocol, which as i said irritated my Interstitial Cystitis, so I had to quit. One month, no change in feeling. I feel like i should have felt worse in a month if I really had Lyme.

    I would say I'm one the least likely person to get lyme, I'm a city girl who avoids grass like the plaque (allergies) or even being outside.

    I think the test could have been false semi-positive.

    [This Message was Edited on 02/17/2009]
  17. CFS1992

    CFS1992 New Member

    Recent info says that Dr. Paul Cheney thinks that CFS patients should not have oxygen therapy as it is toxic to their bodies. This is just an FYI for you to check out prior to the therapy.

    If you decide to go through with it, please post how you're doing with it. Best Wishes!
  18. Nanie46

    Nanie46 Moderator


    I am not an LLMD, but I think they might say that there are reasons that you did not get better or worse.

    You may not have been on the right dose or combo of antibiotics. It takes alot longer than a month to see improvement. Even if you did not herx, maybe it could have been for the same reasons....and some people do not herx at all.

    You could have coinfections like bartonella, babesia, ehrlichia, mycoplasma, etc that need to be diagnosed and treated in order to feel better.

    9 months is going to go by anyways...and at this rate, you will still feel terrible or even worse by then. I would still encourage you to see a good LLMD. They are soooooo much more knowledgeable about lyme and coinfections than other docs.

    There is a good symptom checklist in the "Lyme Disease and Assoc Diseases-The Basics" booklet published by www.lymepa.org. Pages 19-24 of the booklet. You can find it at:


    I just would hate to see you discount this theory, and suffer for the rest of your life, if it was correct afterall.
  19. Smurfette17

    Smurfette17 New Member

    Lisa, I just read your message. I can completely relate, as I'm having the most horrible time too. I don't know if this helps or not, but you are definitely NOT alone. I really do feel most of the time that I can't take even one more day of this crap. And I haven't been sick as long as you.

  20. ppriced

    ppriced New Member

    Are you still feeling crappy? I know exactly how you feel just like most on here does.

    If you are like me, you are so tired of people telling you what you need to take and do or try. What you want or what I want is just one person I love to take an interest in my health and support me even if it is only cleaning for me or cooking.

    All of my family and I do mean ALL of my family, sisters and my children do not support me in anyway at all. They never call to see how I am or just to say hi. I have been hurt so much by their actions. I never thought they would of done the things and said the things they have said to me. Before I got so sick, I was usually the one they turned to. Now when I need them they are not interested at all. I really don't know how they can not care at all.

    I have been suicidal for months now. I am not afraid of dieing. Don't worry I am not going to do anything to myself. I am just saying I feel so bad most the time I would rather be gone than to go through this, physically and mentally for the rest of my life.
    I do know how you feel. If you need to talk let me know. I got a good ear.. :)


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