Are you better off this year than last?

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Aug 23, 2006.

  1. mrpain

    mrpain New Member

    I'm curious to know what has made some of you better off this year with your health. I just read a thread where many people claimed that after the first year of their illness, they began to get better..

    I don't know if they were just trying to console somebody, or if they really meant it.. I've been fighting this illness for over 20 years, and each year I seem to get worse. So please let me in on your secret so I'll be able to say that I'm doing better.

    I do admit I'm brainfogged, so I could have misunderstood. And maybe some were just saying that they've come to except their illness, but I am interested in any advice that could help a middle age guy who's having a less than average week... Thanks!
    [This Message was Edited on 08/23/2006]
    [This Message was Edited on 08/23/2006]
  2. jeduanboneis

    jeduanboneis New Member

    I also have had CFS for a long time. I remember the first 5 yrs.I was so sick I thought I was dying. I thought that I had leukemia because I wasn't getting any better. I could only work a few hours a day. That was in 1983.

    I couldn't say that I am any better at this time in general. I would just say that I am having a relapse and that I have been in remission before. But remission was not like a normal productive day like I used to have. But I was able to excercise and work part time. And I used to eat just protein and some veggies. But not now.

    Think I had a virus about 3 weeks ago and haven't been able to kick it on my own. And at this point I feel too sick to do much about it. Cook good food, take extra herbs. Only help is when I can sleep extra. But I know for a fact that I mostly live in denial and hope for a better tommorrow. And then I just do the best that I can. And then eventually I seem to be able to do more. So I think that when something comes our way it will hit us extra hard and it takes a long, long time to bounce back.

    I don't want to sound negative, but when I am not in denial I can just do some things and then rest. But I would say that summer is not my best time.

    Sorry if I am rambling, but as you know it is very hard to explain.

    Wish I could say that I was recovering, but I hope for a brighter future the longer that we go along. There has to be some help for us somewhere, some day, somehow.


  3. spacee

    spacee Member

    Gee, Can I remember what I wrote???

    Yes, I am better than I was 5 years ago. Why?

    1, My last son went to college out of state. That was necessary so that he would not be able to bring his laundry home...Same with the other two sons. This was an important issue.

    2. About 3 years ago, I started taking Immune Transfer C which is sold at this site. Sadly, it doesn't not help everyone. Also, sadly it does not help my brain.

    But because of it I can work up to exercising about 7 hours a week. I start extremely slowly. Go to the Y for 5 mins 3 times a week for a week, next week 10 minutes, then 15, then 20.

    I walk at a mall because of the a/c. First week or two 15 minutes for 3 days (not in a row). Then 30 min. and work on up to 45 mins or 1 hours. A couple of time I had to stop for lowfat, no sugar icecream to get to the next 15 minutes.

    Then introduced yoga and now this week "pump it up" class.

    What does this do for me. Well, I feel better and I can travel with my sister for little trips. She is the travel guide since her brain works.

    So, there I am...strong body, weak mind. I have told my hubby that I cannot live alone and to MAKE PLANS.

    Is that encouraging or what??

    Hugs. Spacee

    PS, I still spend alot of time in bed though.
    [This Message was Edited on 08/23/2006]
    [This Message was Edited on 08/23/2006]
  4. razorqueen

    razorqueen Member

    I admitt, you got me with your title!

    I think for me it has gotten worse over time. I've been listening to my drs too much. Now its time to build up my body.

  5. mrpain

    mrpain New Member

    Transfer factor c;- I had to type that down real quick so I wouldn't forget.. Now if I can remember my question....
    Oh yell; how did it help you and what did it help specificly? A particular symptom or the illness as a whole?
    I'll try anything at this point..

    WOW!!! I just looked it up and it cost $390.00.....
    For one bottle!!! Yikes!!
  6. angellwolffe

    angellwolffe New Member

    actually yes and no. for a few years it seemed to be getting better then all of a sudden i hit another brick wall and it has been getting worse over the last three.

    Angell
  7. spacee

    spacee Member

    The $390 is for 3 months (90 capsules). One month is "only" $150ish.

    Now what was the rest?

    1. I had been taking Kutapressin for about 16 years which is a antiviral that is safe to use for longer than 6 months or a year. Alot of these antiviral are pretty hard on the liver.

    Kutapressin kept me from being housebould. Inother words, I could show up for "life" and give a decent impression of being normal...except for the brain. I could go to the kids school events, hubbys office stuff. I could travel by car 3 hours.

    Then on this board I discovered that Kutapressin was no longer being made. (now it is and is called Nexvir). My poor brain was able to find that Immune Transfer C addressed the same viruses as Kutapressin and a few more. Eureka!! Always love to have MORE viruses addressed than less.

    And the added bonus was that although the cost is high...Kuta and Immune Transfer C were the same price per month. Also, Kuta was a injection and now no more needles!!

    With Immune Transfer C you can see improvement for up to 1 year. Some people (Mikeie) are then able to cut down and do a maintenance dose every 6 weeks. But that didn't happen for me.

    The basic improvement was stamina. And better tolerance for exercise. This past weekend, the 3 sons were here, two wives, one extra friend of the boys from high school. I was able to go three days from 9am-11pm with no nap. One of the sons did cook the dinner but I did alot in the kitchen and still had energy to have fun with my daughter in laws.

    That is far from well, but better than I once was.

    Spacee
  8. kirschbaum26

    kirschbaum26 New Member

    Hi:

    I thought about this question for a while. I have to say that I am worse off this year than I was last year. I have RA, apparently a severe case. I have had it for 10+ years and managed to live a fairly normal life...work, raising a 7 year old on my own, lots of family responsibilites, okay with travel, etc. Last December I started a terrible RA flare that has really messed me up. I have not worked since March, and cannot really see if I will be able to return to work or not. I cannot do much with my daughter, unless it is a good day, or if I can pace myself. My pain level is higher, but I am not taking any narcotics (went through getting dependent on vicodin 4 years ago after a bad car accident, and do not really want to go back to that).

    I am hopeful that I will be able to get back to my "normal" self, but know that I might not be able to do as much as I used to. I try to pace myself, but sometimes that does not work either. I tend to crash from overdoing it, but still have responsibilities that prevent me from recovering completely. That is why I think that FMS is a cumulative disease. We get less and less tolerant of what is going on, and our bodies get more annoyed with us for not taking the gentle hint that our legs will not work any longer...and so our bodies have to whack us even harder...and eventually we get the message, or end up in the ER.

    Good luck with your post, as I am curious to see if people feel that they can recover some sort of normalacy with this disease.

    Ingrid
  9. hugs4evry1

    hugs4evry1 New Member

    Have you tried any of the supplements and vitamins we've talked about on other threads?

    I'm better off this year than last because 2005 was probably the worst year I've ever had in my entire life.

    I too have been fighting this illness for over 20 years and I think we're a bit different than the younger ones. Back then when I felt horrible, I thought it was as horrible as it could get. (And it was at the time, just a different perspective)

    No one can possibly warn you how different things get years later.... and we all define things differently. Some think that a weekend trip (or night of dancing) causes the most "horrible flare" yet I define it as my last 2 years. Bedbound/housebound bed to kitchen, to bathroom existance, had to stop driving, got handicapped driving sticker on car, etc...

    I've been up and about since May after starting the new supplements, stopping smoking and a few other dietary changes.

    But...each day I'm still struggling as if I'm on the edge of the flare.

    Someone recently posted a thread about an FM scale from 1-100 and I was greatly disappointed to find myself about a 25-30. And I am doing so much better than I was the past 2 years!!! I thought I was doing great...

    We all need to find a new normal and redefine it each time a flare hits us.

    Hugs,

    Nancy B.
  10. Shannonsparkles

    Shannonsparkles New Member

    Some things are better. Some things are worse.

    Better things:
    I can use the telephone almost daily.
    I can use the computer almost daily.

    Worse things:
    My reading ability is worse.
    My memory is worse.
    I have difficulty walking.
    I can't cook anymore.
    I can't bathe often.
    I burp burning barf all day.

    So, I would say, physically I am worse off... but my social life is rockin'. :) So this year I am happier. But physically, I'll all to pieces. Somebody patch me up!

    Memory loss helps me to take it one day at a time. lol
    ((good question, mrpain)) Shannon
  11. sues1

    sues1 New Member

    18 yrs. of this and it is worse..............Susan
  12. PrariWolf

    PrariWolf New Member

    you say you're "burping burning barf". Have you been checked for acid reflux? It can cause sleep apnea and esophagal damage, and seriously disrupt your sleep. I hope you'll get checked, treating it might help you feel a lot better.
  13. Marta608

    Marta608 Member

    Hi, MP - I see, as usual, I'm jumping in here a day late (and a dollar short).

    I might have been one of those who said they felt better after a year because I did. And then I felt worse again and have continued to feel some form of worse ever since. The Paleo diet is the closest I've come to feeling better.

    So why am I not on the diet now, you reasonably ask? Because I had eye surgery and just could NOT do the shopping and the cooking needed for that diet. Besides, I'm learning to love Drumstick cones again.

    Just hang in there and it will get worse, then you too can say I got better after a year because, by comparison, it will seem that you did.

    Seriously, I think this illness cycles, depending on how much stress we have in our lives.

    Stress = other people, disagreeable weather, our general health in addition to the DD, our health insurance status, how much money we have left, the state of the Nation, what war we're currently fighting, the color of our National Security at the moment, road rage, the sensitivity of our doctor(s), how our kids are doing, how much we insist on pushing ourselves, how much our SOs insist we push ourselves, not having a SO, how much if any help we have and how quickly we learn to pace ourselves. Just to name a few.

    Hope this helps you feel better.

    Marta
  14. pam_d

    pam_d New Member

    I got sick with FM about 8 years ago...I began to improve around 3 years ago, and it has continued, I even went back to work 3 years ago with little to no repercussions.

    I just finished 6 months of intense chemotherapy for leukemia. I fully expected the "FM flare from hell" to rear its ugly head due to my horribly depressed immune system. Never happened. It's been great---I'm fighting a demon, but I'm able to deal with one thing instead of two.

    My FM improvements stemmed first from getting a handle on my food allergies, I believe. Then, going back to work, a killer for some, had such a positive effect on my mental health, that it in turn had a good effect on my physical health. I hate being off work now for leukemia, can't wait to return (2 weeks!)

    I believe you CAN have improvements; so much of this illness is trial and error, and I think what ultimately helps is different for everyone.Good luck, and I hope you start feeling even a little better; I think we all have to measure it in tiny increments.

    ((Hugs))
    Pam
  15. snooker11

    snooker11 New Member

    I have gotten better since last year. pain/exhaustion has not gone away completely but is much better.
  16. littleleafhopper

    littleleafhopper New Member

    I must admit that I've been in denial. This makes about 30 years that I've been attempting to manage CFS. There have been years that I felt like I was going to "get over it", but this year is not one of them.

    I've had a relapse and am struggling with it. For many years I was undiagnosed, misdiagnosed, or just plain quit trying. The denial comes because I haven't wanted the label until recently. It's an insurance killer, not to mention all the ramifications that come from having a difficult chronic disease with no cure, and no clear treatment from the traditional medical standpoint.

    For me for now, I've decided to quit faking it, and embrace it. These boards are a very good step for me. I think that it will be much healthier for me to stop hiding. Few people know that I'm ill. They just think that I'm an eccentric loner. That has suited me up until now. I should have a coming out party!!!!!!

    I love having this message board!!!!
  17. Rosiebud

    Rosiebud New Member

    I'd love to say I was improving but I'm worse....this past year has been the worst and I've been ill since 95, had symptoms since early 80s.

    Apparently some people do recover within the first two years ...the lucky ones.

    love
    Rosie

  18. kaymac

    kaymac New Member

    I'm worse this year by far, but I had a very stressful year last year, loosing my father and moving in with my mother to care for her only to loose her 6 months later.

    I did however change my diet and treat my sleep with a cpap machine (according to my doctor this will GREATLY improve my condition). But no major changes.

    I spend more time resting, but I know there are other changes I need to make. I want to begin supplements and a mild form of exercise and want to start saying NO more to the things I think I have to do but really don't!

    kaymac
  19. alaska3355

    alaska3355 New Member

    My son, who has had CFIDS less than 2 years, is better off than he was last year. He has some brain fog, which doesn't help because he's in college full-time. But I think his fog is lessening and his health is getting slowly better. I think it's because he's young (19) and that his body is healing itself. He needs his 11 hours of sleep each night but I think that's key in his improvement. He did have all of his fillings replaced last fall and I didn't see an immediate improvement....he's done some chelation, but often we forget the Chemet he's been taking for that. But he's slowly getting better....hurray! Terri
  20. Cinlou

    Cinlou New Member

    You know I do not even remember last year, better off? I really don't know....Mrpain, I think I may be Mspain, because that is about all I remember. I have no advice for a middle age man, as I am a middle age woman.
    Cindy Lou