this might be a silly question, but...

Hello Ivy,

I guess you could call me a veteran, next wk. on my 56th birthday it will be 52 yrs. that I have dealt with fibro, among other things.  No, it is not all doom and gloom.  However, many things have to fall into place if you want to lead a fullfilled life.  I don't let anything stop me.  With the right attitude, right combo of meds and supplements, getting a good nights sleep on a consistant basis and support from friends and family, anything is possible.

The longer you have fibro the easier it is to automatically adjust the way you do things.  You can't let it control your life or be on your mind constantly.  I'm in a wheelchair, black out from absense seizures and don't drive. Boo Hoo! Poor Me. Bologna!  I am one of the busiest people I know.  My husband has a hard time keeping up with me.  I have hobbies, cut the grass, work in my yard, take care of 2 large dogs, cook, clean, do dishes and laundry and dozens of other things.  I am never embarrassed to have someone in my home, which makes me proud.  I never leave the house without looking like a million bucks, I won't go out in public and have people tell me how awful I look, I don't want or need their sympathy.  I'm not a religious person, but I believe the Lord helps those who help themselves.

So, I guess what I'm saying is have a good attitude, believe in yourself, exercise, rest and get out there and live life like each day is the most important one yet.

I just take it one day at a time, sometimes one hour at a time and figure this is my life and I'll keep going. If I stop and think about how bad it gets I get all depressed so I try not to. And to be honest, I really don't know what normal is... I've had this so long. So I guess for me, this is normal.

Try to focus on the good stuff in your life. That makes you feel better and helps with the rough times.

I guess we all have a different outlook on this disease. I was  Dx'd with four different things all at once: Underactive thyroid (most likely hashimoto's), anemia, dysmennorhea, and Fibromyalgia. So it's hard to sort out which came first, what is related to what, and so on. At that point I was still with my sons. 25 mgs of amyltriptilene at bedtime and OTC tylenol is all I took. Then, slowly, the prescribed meds didn;t work so well anymore, so I went begging. The doctor threw in some muscle relaxers. Then I needed something for pain. I scheduled four root canals back to back to get some relief. That was when doctors were fond of saying, " it's all in your head." I got a lot of that. Mainly, I struggled along untill I couldn't anymore. I went on disability for a short time. Then I returned to work, and just as I was catching up, working 16 hour shifts, I was mowed down by a truck. Thank-you lord. No more struggling. At least now I had a legitimate (in Doctor's lingo) disorder, they could actually treat.  When I have what I need to feel OK I have good days when I have the right meds. For me, I wake up early 5AM, take my morning meds and when I feel able, up I get and go outside with the dogs. It is so simple. If I didn't have to fight so, for what I need to live a simple life, I have lot's of good days.

Thanks, all. I'm still fairly new to this - my Crohn's has been so bad for the last ten years that I didn't really focus on the fibro much, even though it was there and bothersome - and it's only now that the Crohn's is a little more controlled that I'm struggling to find a benchmark of what's the new "normal" for me. I keep thinking that the fatigue etc might resolve itself and I'll start to feel better one day.

Am I right in thinking, from what I've read here, that this won't happen?

So... "normal" from now on is feeling tired and achy and clumsy and exhausted and wooly-headed, and I should just accept that, and adjust my life accordingly, especially as I know that my fibro could easily get much, much worse?

Is that right?

Thanks, all. I appreciate your advice. I think *acceptance* is really important. This hoping and waiting for better days is getting both hard and dissapointing.

Ivy.

Hi Ivy,

 

I have a slightly more different experience with my fibro.  I was diagnosed 7 years ago with it (about 8 months after my lupus diagnosis).  I had all the tenderpoints, but nothing else!  Then, after a very serious health crisis 15 months ago, the fibro came out of hiding. I've been in a severe flare up since the summer of '07.  It's weird.  I've had fibro for 7 years, but I'm just now really knowing how horrible it is. I am learning all about it now, 7 years into having the disorder. 

 

So for me, it was definitely a physical trauma trigger that made this "quiet disorder" an absolute beast.  I guess it can ebb and flow from time to time. For me anyway.  I haven't had a break from the flare up in 15 months. I'll just have to wait and see if I ever do get a break.

 

It is really discouraging isn't it.  We sure do understand Ivy. 

 

Blessings,

ginny

Ive had CFS for 13yrs- diagnosed at 15. the Fibro came after.

I have not had a single day of feeling well in 13 years, minimum.

I do not remember what good, 'normal' health feels like.

Some days are far better than others.

The show goes on    

Maz XX

Ivy, I'm like the rest of the people here.  I've had fibro for 21 years and, for me, it has gotten a little worse over the years.  I don't remember what it was like to get up and feel refreshed and have no pain.  But, I will have good days and bad days.  I also have a period of time..usually several months...where the pain is a lot less than usual

 

But, as Gamma said, a lot of how you feel has to do with not only how you control the pain but also your attitude.  I know that once I accepted this illness then I could push it in the background.  I, too, have Crohn's and for many years the Crohn's was my main health problem.  Now that I have that under control the fibromyalgia is my main health problem and causes me the most problems.  But I can find ways around it and do what I want to.  Jeannie was right.  Don't think about it.  Just move on with your life and you will be surprised how the pain will fade in the background!

 

Sherrine

ps. I think what I'm really asking is this:

Is being exhausted and sore an indication that you're in a flare, or is that the normal baseline state for someone with fibro?

How can you tell if you're in a flare, when there's no blood test etc you can have? Do all people with fibro flare eventually?

Sorry. I know these are basic questions, but I couldn't find an exact answer in the 101 etc threads.

Ivy.

My mom is diagnosed with MS and she has about 60% bad days where she is totally wheelchair bound, about 20% of days lays in bed, in the dark, and about 20% of days when she can run down a hill or up the stairs. I find my Fibro takes a similar course; about 60% of waking unrefreshed, being stiff and sore and not able to get much done untill my medicine kicks in. about 20% of days when the medicine does nothing and I classify it as ä day to be gotten through, mostly laying down, meds do nothing. And by gosh and by some miracle, about 20% of days with just mild symptoms, I can actually see a light at the end of the tnnel. Sure, I tire easily, but if I can pace myself, I can make the "good"spell last. Unless of course something untoward and unexpected happens that puts me in a tailspin.

lIvy, I always have some level of pain and fatigue but, when I'm in a flare, I really notice a difference in the pain and fatigue.  I've had flares last several months!  I do always pace myself though.  I have enough pain without creating more. 

I have had a great life in spite of fibro though.  That's where the positive attitude, sense of humor, and just keeping on living your life comes in.  I can't do as much as I used to but I do get everything done eventually.  My perfectionism has been cast to the wayside.  But, I am having a lovely life! 

Sherrine

Ivy, that was not a boring or bothersome question, at all. It helped me immensely. Since getting a view through the mist of depression, by getting meds straightened out, I can honestly say, I'm reevaluating the whole Fibro question. For myself. I have BiPolar disorder also. I get way out of whack when left to my own design vis a vis how to manage. I fight tooth and nail to be "in charge" of how it should be managed. When left to my own devices regarding my Mood Disorder, I can get in terrible emotional tangles, and much of it manifests as somatic pain.Time will tell.

Donnaeil: Do you mean that when you begin to feel better, like the Fibromyalgia is being managed, the fact that we are all getting older, joints hurt, we're tired, heavier, less active (older), that makes the Fibromyalgia worse?