1st year sick..please tell me it gets better.

Discussion in 'Fibromyalgia Main Forum' started by jane32, Dec 30, 2005.

  1. jane32

    jane32 New Member

    So every year before new year's eve I look at my day planner and remember all of the things I accomplished or did. Anyways, I have had a planner or calender since I was a kid and I look back on them. Well this year I was a puddle of tears looking back at all of the cancelled appts. or parties with friends. What disturbed me even more was all of the drs. appointments and tests spread out over the 9 month period. I remember how scared I was not knowing what was wrong. I wasted 9 months being worried to death that I was dying. I am typically a happy person and have been taking my diagnosis well but today it really hit me, "What happens if I never get well or stablized?" I have read that the first year or two is the worst. I am getting treated at the FFC but I just really fell very hopeless today. I also had an arguement with my husband which didn't help. Sorry just wanted to cry to the computer tonight:(
  2. Pianowoman

    Pianowoman New Member

    Hi Jane,
    I know it's tough, especially when you look back and see it all at once. It is very worrisome when you don't know what is going on. I well remember those days.
    In many ways, you are in a really positive position. A lot of the research shows that if you get the right treatment early, you have a much better chance of significant improvement. You are going to an FFC, one of the really good ways to manage this disease. Hang in there, I think things will get brighter for you.

  3. Sandyz

    Sandyz New Member

    Everybody is different with this illness. Me, I started out mild for years, didn`t know I had anything. Mine just got worse over time. You sound like you started out fairly bad.

    I am hopeful for the future because so much has come out of research the last year. I go to the FFC and they are really good and I feel our best bet at this time.

    Just take it one day at a time. Their are better days ahead.

  4. JLH

    JLH New Member

    For me, no. It has gotten worse. However, I am quite a few decades older than you are! I have a ton of other problems wrong with me, some serious, which also make the fibro worse.

    I have had fibro and lupus since I was 10 yrs old and I am almost 55 now (I see my birthday is only 1 day before yours!)

    I worked for 30 years with it and raised 3 children and a husband during that time. I retired early due to my health, or I would still be working because I absolutely loved my job.

    Like someone else said, your outlook on life with it is a lot of it. Some meds can make a huge difference in how you feel. I really didn't start on a lot of different meds for my fibro until I retired. I worked so far away from home which meant that I was on the road a lot, that I could not risk being heavily medicated. My mind was already foggy enough from the fibro and the nightly lack of sleep (I only had time for 6 hours of sleep/night).

    I take a lot of meds now for all of my problems (see my bio), but my fibro meds do not keep me heavily medicated. I wish I knew that when I worked! I have found that Cymbalta, Neurotin, and Zanaflex at night have helped my fibro the most. After a sleep study, I also sleep with a CPAP machine and oxygen, which are a lifesaver!

    I am so sorry that you are feeling so poorly today. And ... having an argument with your husband doesn't help. I saw your wedding photo in your bio - BEAUTIFUL!!!!! You both make such a lovely couple. Just remember--the very first year of your marriage is the worst! If you can get passed it, it will be OK! At least that was my case! I will soon be married 35 years!

    I don't know how the FFC does on treatment, but I know my primary care doc, who in an Internist, does a fabulous job with me. He is far better than my Rheumy!

    I certainly hope things improve for you in the new year!

  5. Musica

    Musica New Member

    I don't know whether you are normally a positive person or not, but everyone is entitled to a down day! Especially when you have made it a habit to look back at the end of every year and see what you have done. That WOULD make it hard.

    When I was first dx'd with RA, all the "what ifs" were just so overwhelming. What if I get deformities? What if I stop being able to care for myself? It just plain takes time to adjust to! After awhile, it stops consuming your every waking moment and even with cases that don't respond to meds, it becomes more of a way of life. For you, the end of the first year of med appointments, missed socializing, etc. is a crucial point and I understand you completely.

    In about the past 14 months I have had a cranial/cervical MRI (to rule out Chiari malformation), a whole body bone scan, a neuro eval, a bone density that showed severe osteoporosis, a sleep study that showed severe sleep apnea, and more doctor appointments than I ever had in my first 49 years combined! And that is AFTER being diagnosed with RA, plus having a hysterectomy in October, partly to rule out that the huge fibroid I had wasn't causing my pain! When you are used to good health and accomplishing a lot, and suddenly you are on the medical merry-go-round, it's a big adjustment. I don't know what your circumstances are, exactly, but I think I relate.

    I'm so glad you're at the FFC. Someone mentioned that early treatment tends to lead to a good outcome. I'm not sure why, since so little is known about what makes FMS tick and it's not trying to stop immune cells from literally eating up your body. Is it because early treatment of symptoms and related conditions (IBS etc.) can prevent those from getting worse? I certainly hope it is true, whatever the reasoning!

    Hugs as you go through this particular dip in the road.
  6. anakinkaid

    anakinkaid New Member


    Boy, can I relate to what you are saying. I had the same experience of all the cancelled appointments/doctors' tests with the end result just a name and no cure. Gerrrrrr.....
    At first I saw a pretty dark future in front of me....endless and getting darker.

    But (and this was on a good hair day I could do this) I fought back (and still so). I got my business organizational skills out and said, "OK, what is needed on the 'project=my life'"? I started moving the pieces around to make it easier. NO WASTING ENERGY (really precious stuff/resource that now) mourning for the past (it would be silly: like, I'm not 24, a college senior or a size 4 anymore-I let all that go, I can let stuff closer to me now go too).

    I did some simple stuff first that gave me some sense of ability concerning something I could still do SUCCESSFULLY - my kitchen. First, I organized my recipe collection into "easy, on a good day and only with help" categories. Second, I located markets that will deliver food to the house. Third, I got friends to come and help me clean my cabinets out-got rid of all the unnecessary stuff. The result: brighter, cleaner, fresher but, most important, supportive of me as I am NOW.

    As I worked through the above, I realized that I must SUPPORT how I am NOW, not battle it. If I battle/deny, I can't win. My plan: surround it, accept it and 'smile' at the damn thing :). (Not cursing there-just being expressive). If I have to rest on the couch because I can't walk, I'm going to have the softness blanket on my lap that I can find/make. I'll accept the pain (if nothing can be done about it) but I will have that lovely softness to hang on to. I will give the disease its due, BUT I insist it will give me mine.

    Jane, sorry for the long reply. Hope it helps. Don't give up. You will find your way in this.


    LISALOO New Member

    I have had CFS for 14 months. It is hard. I've been getting worse, going to FFC for 4 months, still getting worse. It's hard to look at all the stuff I haven't done this year. And I really got into the "you deserve better speech", with my husband last night. And how I don't make any money, just spend. And I keep thinking that I'm not stabilizing, and do I want to be like this for the rest of my life I'm 28. I know people who have gotten better after 5 or 10 years, so I'm holding out hope.
  8. kch64

    kch64 New Member

    Try to look at the positives. At least the MDs are recognizing this disease now. I know many of us that have had this for years, and no one has ever attempted to tell us that we have FM.

    I for one didn't get a diagnosis until I went on my own accord and persued it. Not by my doctors inclination, but by my own.

    Yes, you can get better. All of us have to believe that. I believe even the worst suffering among us can get better.

    Keep your hopes high.

    Happy New Year.

  9. Shannonsparkles

    Shannonsparkles New Member

    I remember my first year... I remember the day I became housebound, second monday of July, 2002. The week before I had had a long walk by the lake, with the thick green grass all around, and the roses comming up in people's gardens. I will always remember that walk.

    Then it was just me in my room. I would drag myself across the floor on my elbows to get to my bookshelf, then rest there on the floor till I was able reach for the books. I nibbled crackers because I was to tired to cook anything. I watched the weather out the little hole of the skylight over my bed. Sometimes I would see the neighbor's kids play in the street.

    Gradually I started to tune out the life I had before. It was just me now, pretty much alone, and I had to survive. I was too sick to go to church, work, see my friends or even make a phone call. I couldn't hike anymore, or go to the thrift store. I would just lie in bed reading kids books all day because my concentration was too poor. I made all my food for the day in the morning, and carried it up to my room. Then I would re-heat my lunch and dinner, when the time came, in my little microwave. Couldn't watch TV or be with my family, even though we lived in the same house. I couldn't do anything anymore.

    If you don't recover, you will cope, and stay alive, and keep moving into tomorrow. But I think you WILL recover. You're young, you're getting treated early, you're working with a very good clinic. You're taking care of yourself and learning all you can. Odds are all good for you!

    If you don't recover... you'll age. Years will pass. You will learn more and get stronger on the inside than you have ever been before. You may go on to be an old soldier like me. And you'll still be here when they discover the cure for this. You'll get friends and take life in stride. You'll be empathetic and find out what's the most important to you. You'll cry and you'll cope. You'll be your own best friend. And things will be different, day to day.

    I'm 23, sick since age 13 really. I may never be able to have the things that I wanted. I may never learn to drive a car. I may never have my first kiss. I may never hold my children, or run, or work. But for sure, I will never stop hopeing.

    Sorry if discouraging... life will go on, even if differntly. ((((( )))))
  10. Shannonsparkles

    Shannonsparkles New Member

    Most of us here are pretty sick, maybe for a long time. It is a support group, after all, so you're hearing from the sick ones. The 50% or so of us that DO get better are out there enjoying their lives right now! With the FFC, the ods are even better. That could be YOU, very soon! (((( ))))
  11. tanyasue

    tanyasue New Member

    The illness itself hasn't gotten better. But I found a doctor that works at getting me adequate pain relief, while understanding that I have to work to support myself.

    I have a great therapist (who has fibro-which I didn't have when I started seeing her and didn't know she had it). She has helped me to be easier on myself and gentler.

    I think mostly though, my capacity to deal with this has increased. I still have my moments that I am overwhelmed, but they are no longer 24-7. When I have a flair, I am able to remember that this will pass and I will get some relief again someday.

    I think the most important thing is not to lose hope. You may have to change your goals and slow down. Even stop at times. But you have to find a way to have things you enjoy. Keep searching until you can find a way to make your life and your illness work together.

    I hope this helps.

    Tanya Sue
  12. cerise

    cerise New Member

    self-education is critical. Read everything you can so you can make intelligent choices for yourself. Knowledge IS power.

    I have had CFS for over 18 years. I wished I had listened to my specialist back in 1990 when they first started to learn about this DD.

    What I learned and didn't listen to made all the difference and can make the difference on whether you can get your illness into remission for any length of time.

    1) Listen to your body at all times. It is your master now. When it says you need to rest, it means NOW! Do it!

    2) Avoid all stress that you can in your life. What do you have control over and what you don't have control over, distinguish. Handle those things that you can control, it is very important.

    3) Establish support. If you don't have it where you need it, get rid of it. It only causes more stress.

    4) Find a specialist who understands your disease.

    5) Focus on your health now, don't over do it or you will pay the price later.

    6) Watch yourself around anyone who is ill because your immune system isn't the same.

    7) Think twice, meaning educate yourself before getting flu shots, anything along those lines.

    That's just the basics. If I had done these things I wouldn't be where I am today, completely disabled.

    Good luck and there is hope. Get well because we need your assistance down the line!
  13. Dee50

    Dee50 New Member

    Hang in there. You are smart to go to FFC. They are getting to the root of your problems. All the doctors I have gone to over the years have never found anything wrong with me, till last year at a DO doctors office and blood work with active-EBV.

    This last year I too tought for the first time this stuff was going to kill me-well I'm still here!lol

    We have to keep fighting for quaility in our lifes.

    In the beginning of this stuff I always got better. At least I got to the point that I wasn't bedridden for a few years at a time.

    I do believe this year will be a better year of you. As you are actively fighting the root problems to your illness. I know you will have ups and downs but I pray that you will steadly regain your health back.

    Keep your head up high you can and will beat this crap.