Do you ever think this?

Discussion in 'Fibromyalgia Main Forum' started by Shazzy, May 5, 2003.

  1. Shazzy

    Shazzy New Member

    Hi everyone.

    Do you ever think that there something wrong with you they have missed?

    Do you ever think that this illness is killing you?

    Do you feel so stressed every day from the ill health you have to suffer constantly?

    Do you ever feel so ill you cant wait for sleep time to come so you can get some peace from it.

    This is things i often think. What about you?

  2. Mikie

    Mikie Moderator

    I've been using a lot of trial and error to see what works for me. I suggest everyone start with the worst symptom and not stop until relief is found. Then, move on to the next.

    One thing I am discovering is that we cannot heal as long as we have chronic infections living inside of us. I am conquering the mycoplasma infection and am now doing research on how to get rid of what I suspect is chronic Herpes-family infection(s). I have not used fancy, expensive tests. My doc and I believe in trying things empirically to see what happens. I was fortunate enough to know that it was a mycoplasma infection which triggered my illnesses. I was also fortunate enough to have to take Famvir prior to my surgery and it put me in total remission. I am now researching antiviral treatments.

    There are sooooooo many facets to our illnesses. I believe them to be a result of a bunch of defective genes. Which ones we have determine how our illnesses manifest themselves. Then, there are the infections of opportunity which infect us. It's like each patient must design his or her own regimen tailored to his or her symptoms, infections, and sensitivities.

    This all takes years, but what else do we have to do with our time that is more important than this? One last thing: It is really important not to put too much hope into any treatment just because it has helped others or it is easy to become frustrated. There is probably something which will help each of us and sometimes, it's like looking for the proverbial needle in the haystack. If something has helped a lot of us, on the other hand, I think it's good to give it a try.

    Love, Mikie
  3. bejo

    bejo New Member

    I don't feel that this disease is killing me.What I wonder is how much I'll have to suffer with it before something else kills me.I also am anxious to go to bed.Some evenings are so long that I start counting how many more hours until I can go to bed.I do feel left out of so many things,even with my family because I'm not able to do them.I feel hurt because my family doesn't seem to care how I feel.I've got to stop now before I get myself depressed.(((((((hugs))))))) bejo
  4. Madelyn

    Madelyn New Member

    Yes,yes,yes,yes. It's beginning to dawn on me after several years that we'll go from one thing to another forever...

    My earliest symptom in 1987 was minor chest pain. I went to the cardiologist. You probably have MVP. Go away. I felt relieved. More symptoms, classic stress, worry. Holter monitor shows nothing. In 1993 hip replacement. In March '94 I was 3 months pregnant. Full blown chronic fatigue hits me. (It had been creeping up) I am in bed for the next nine months, getting out only to literally crawl to various doctors who didn't care which end was up. Climbed out of that pit, have been functioning since with flares on and off. About two years ago I had a stress echo, fine. Oh, you don't have MVP. I found a good doctor a year ago who is working with me. I complain of new types of chest pain. Another stress echo, fine. Pulmonary function test, fine. In Feb of this year I'm still worried about even newer types of chest pain. My Dr. listens and can hear a murmur or something--you could have MVP! She sent me for a cardiac CT scan. THIS WILL FINALLY TELL IF THERE'S HEART DISEASE or if IT's CF related! They can't do it because hr has to be quite low to get pictures. She prescribes a beta blocker for the day, I go again. It didn't work!! Each time I gear myself up for the test because I've never had dye or beta blockers and I'm phobic about new meds. I go for the third time and the stronger beta b. worked... but not well enough. I've been lying there on the table ready to get the test THREE TIMES and I still can't get an answer to this question that haunts me every day. I have small children, am I going to be here for them? Or is this just basically harmless pain from CFIDS? In this day and age, I can't get an answer! I've been trying very hard for many years to find out.

    So I can relate. But worrying doesn't help.
  5. loopyloo

    loopyloo New Member

    It took me 5 years to get diagnosed with M.E./CFS and the doctor/specialist at the hospital said it would last for 10 years and then go but not completely you will still feel tired they think it started in 1997 but cannot be sure and the more i read on this site the more i feel like it wont get better it seems to be getting worse all the time and i also think by the pains, that i have FM as well which i am going to ask about next time i go to the specialist, it is a worry as i have four children and 2 step children you worry if your going to be there when they grow up and get married and granchildren allsorts go through your head, some times you feel strong and say i wont be beaten by this dd and other times when your really hurting you feel like when will the pain stop and when will it go away,and is there a time when it will be at its worse and you can think now it can only get better the worst is over, but we have no answers to our questions we just wait.

    big hugs
    Loopyloo xxx
  6. 2girls

    2girls New Member

    I believe there is a root to every problem, including our illnesses. And yes, I do personally feel that there is something wrong but my doc has not found anything concrete to justify the pain. I do not feel this illness is killing me but there was a time last year when I did feel this way. I try not to stress about health issued (anymore) because I feel they exacerbate my symptoms. Yes, there certainly are days when I feel so ill I can focus only on sleeping - but I try not to give in to it. I do rest when needed but I do not want the illness to dictate my life. It's tough at times but I try to get through the bad days as best I can.

    Sue - I love your outlook on this - it is marvelous! Reading posts on those who have had this DD for so many years gives everyone hope for the future. Positive posts are uplifting for sure.
    Thanks y'all!