You have explained this very well. I feel this way too. When I feel better, I start thinking "I'm not really that sick." And I start dreaming about what type of work I want to do. I usually even start looking thru the paper and updating my resume, and... and.... and....

Then I get sick again, and I cant remember ever feeling well, or not having to push to do everything. Just taking a shower puts me down for an hour, how can I possibly drive to the store, shop, and then drive home without running into anything. And why did I ever think I could actually make a good impression at an interview.

I've been thru counseling, group therapy, physical therapy. Anything to try and get better. Then when I think I am accepting this horrible thing, it put me back into my place. (I was going to delete the last sentence, but it is really how I feel.) Almost like I don't deserve to have a normal life.... hmmmm.... I wonder where that is coming from.

It is this da... FibroMonster. I think it has messed with my brain so bad that I can no longer think correctly.

Sometimes I still have hope that there is a way to reverse this thing, but I am also afraid that too much damage has already been done to my body & mind that even if a cure is found, I will be left behind to continue to suffer.

I hope you can find the answers you need and the peace that you seek. At least we know we are not alone in this horrible struggle.
{{{HUGZ}}}SG

Hmmm...This is a tough thing. We all have a Chronic Illness here, and at times or for some, all the time it is pervasive.
Will we get healthier, does it go away, or by making some dietary and exercise changes make enough of a difference to improve our quality of life? Do we fight the Fibro, or accept it?

I struggle with these questions a lot. For me, and maybe because I have 2 other chronic Diseases, I find I do much better when I feed 'The beast' rather than try to kill it off with a baseball bat. So essentially, Me and Fibro, and my Immune Disorder, and my Auto Immune Disorder, we all hold hands (isn't that a pretty picture?). I feed them healthy food, I give them rest, I give them safe exercise, I give them a few sick days when they are run down, I take them to the Dr as needed, and overall I try to be a good friend to my 3 little buddies.

However, just because they tag along with me everywhere I go, does not mean that I have fused with my little buddies. I am ME, they are THEM and the line is clear. So, i have things I like to do without THEM, even if they are always with me, I have my own interests, my own hobbies, and While I have to take care of my 3 little buddies for the rest of my life, I do not have to become them...So yes, I accept my DX, I take care of my DX's but I work extremely hard not to let them eat away at my core person.

My life has changed drastically since my Fibro DX, but change is not always bad. Fibro will always be right behind me asking for attention, and sometimes I'll have to give in and give it that attention, but if I'm laid up in bed, I do things that feed my individuality-listen to my music, read books that interest me, sketch etc...I work to keep core parts of myself separate from disease.

I can have disease, but I won't let disease have me.

Dunno...very tough question...

The five stages of grief are well-documented---and now that I've stopped sounding like my shrink---I'll add that my shrink also says we can "cycle" through them for years and years.

I went through this in my twenties and did the same up-down-all-around of "oh I feel better let's go!".... and learned the hard way to simply accept that feeling better was a gift, use it wisely. So my good stretches (and I had one lasted about 8 years!) were used to build up my business, take those trips, etc., but I was lucky b/c I did hit that point of having all those years where flares were few and far between and mild. (Not so much now. I hit 40 and got my a** kicked all over again. Then I had an accident and had spine and pelvis injuries. And FM laughed and laughed and luaghed as it took over my life again. Argh!!! I am back in the anger phase, can you tell?!)

I think the only "cure" for the roller coaster is to accept that this is a chronic illness and that while we NEVER GIVE UP---we have to go with caution. And that is hard to accept, absoltuely. I've been doing the FM roller coaster since 1995, and with its mega-sized return since my 2011 accident and subsequent struggles?...

Wow, I whine a lot. Sorry! I meant to say: Don't give up hope that there's a better treatment or a better day/month ahead. THat's how I have kept going. So far... sitll going!

Hugs,
Leo

I think I am still in denial as like you, the good days make me think I am 'ok'. Then the not so good days make me think...geesh, what is wrong with me? I tend to want to blame it on anything other than fibro.
It seems like it just can't be this bad and not have it be something other than fibro. Esp when others (normals) treat us like it isn't that bad and they have tons of advice for what we 'should' be doing!

Apparently this Fibro Monster is very unpredictable and difficult to tame. Sure makes it tough to accept!

Take Care, Dawn

All good thoughts here. I guess for me what helped the most was to realize that "acceptance" is not the same as "giving up." I can accept that I have a chronic medical condition without accepting that this is as good as it's going to get.

I've been diagnosed for nearly 20 years, and I have had times when I truly didn't have any reason to alter my lifestyle, and then they took the one med that did that for me off the market and I was left struggling again with the acceptance, as I guess I really didn't get it the first time around due to the available of a med that completely removed most of my symptoms.

The thing that helped me the most with acceptance - and with understanding that it's not giving up - was finding other people who are struggling with the same things. Between DS and my local support group, there are always people to talk to who "get it" and much of my acceptance, as well as improvement, I credit to the presence of these people in my life.

They support me in bad times, and keep me grounded in good times. I can enjoy the symptom respites without falling into the "I'm all better now!" trap.

Wow guys,

Your sharing these comments and thoughts are even more valuable and healing than I imagined they would be.

Thank you all for so thoughtfully and so unselfishly giving of your time and energy.

I feel I have been given a measure of peace and comfort through them, and am now better equipped to continue riding this particular coaster.

With sincere gratitude,
rsimmons

hi just wanted to know if you are one of Jehovah witnesses.

Anchorage, that is an interesting question. I wonder why this particular question came to your mind.

Nevertheless, the answer is yes. Are you also one of Jehovah's Witnesses?

I have had this disease all my life. I don't care what appellation the 'experts' use for it, for me, and I imagine pretty much everyone else here, it is most certainly a DIS-ease. The technicalities mean nothing to me in my daily life. Like Leo, I have had those ups and downs throughout my life, long before I got a diagnosis.
My mother had it, too. After I was diagnosed and began researching the condition, I realized that it was what my mother had had for many years. I can tell you how guilty and stupid I felt at that time, because I and my siblings had often thought that she was a hypochondriac. I have written to several people here who mention that they families don't believe that they are sick. I write about my feelings and beliefs about my mother and how I now have it, too, and how I feel about my thoughts about her for so many years.
Oh, sure, I realize that I was just thinking with all the information I had in my brain at the time, but I feel horrible that I wasn't more sympathetic than I was. If you have family members who fall into this group, PLEASE tell them of my experience. They need to be warned about the possibility of getting the disease later in life, one never knows, but I can tell you that it is most certainly genetic in my family. Not the disease, per se, but the tendency to get the disease. I don't know why some agency or other doesn't want to study my family. We could be the poster faces for the condition.

I think quite a lot about how I go in and out of some level of denial about the illness. It's really more about hating it now, than a true denial of the fact of how ill I am now. I listen to how the experts assure all of us that it isn't 'progressive', all because there was no evidence that your body was breading down, but now I realize that my brain is changing. It is deteriorating and that effects my body in new ways.

When I was first diagnosed, I took a class at my insurance provider's facility that was given by a doctor who had fibromyalgia. The first thing she said was this:
"The good thing is that fibromyalgia won't kill you."
"The bad thing is that fibromyalgia won't kill you."

Too bad that she was wrong. I can tell you that my body is breaking down right now, not just simple aging, but something more. I have so many new co-morbidities with fibro now, my life is almost unbearable. I'm not kidding myself anymore. I know that, if I don't actually die from one of the many illnesses I have now, I will likely take a more drastic step to end all this ridiculous, meaningless suffering. I wonder every day how I am able to deal with all I live with and still keep going. I am amazed.

I do see in myself this unending need to search for something to help me live a better quality of life. Unfortunately, my latest attempts at this were fruitless and just left me more broke than I already was.

After I was diagnosed, after I took that class, I went to see a neurologist for further examination. He told me something that I remember every day. At the time, it infuriated me. Here is what he told me....Be patient. Don't go chasing after the Next Big Treatment. Take care of your body generally and wait for a new development.
I was so furious that he would tell me to just sit back and suffer, I can't begin to make you understand....unless you understand because you have heard things like this yourselves. As much as I hated hearing that at the time, today I believe that it was one of the best pieces of advice I ever got. Trying to find something to help myself feel better just usually ends up breaking me even more. I get more depressed and more ill. I need to be able to tell my well-meaning friends who call or email me with everything they find on the internet about fibro that I have done everything possible and that I am up on all the new developments. We all know about those fabulous new treatments that either don't work at all or, worse, cause horrible side effects. That advertising machine is out there making us believe that we, too, can be playing volleyball on the beach or running down the street with our children. People who do that are bad people. Taking advantage of people with no hope is a pretty evil thing to do. I try to avoid the media as much as I can for someone who watches as much TV and to whom internet exposure is a part of daily life. They keep making me think that there IS something out there that will help me. Then I get hit with the new side effect and crash again.
I'm terribly sorry that I've gone on so long. I can't imagine that many read this whole posting. For those who did, thank you for listening to me explain part of the agony I experience because of this horrible, horrible -- yes -- DISEASE.

Because in your profile you mention Jehovah name and I know of no one else that uses this name like you did but Jehovah witnesses.
Yes I am one of your brothers and I have fibro also and it has about destroyed my life. Sorry about your troubles.

Hi marshabel,

I have read your whole post, and I wanted you to know that I appreciate everything you said, and I feel your pain.

Acknowledging the facts of just how hard it is to live with this disease is empowereing to me. I have heard more than once doctors parroting "The good news is that this is not going to kill you." My mental reply is: "No, it's just going to feel like it is. Slowly, every day."

And I get angry when I think about how little doctors know about it, but only because of the way they conduct their ignorance. In my experience most often arrogantly, smugly, void of compassion and barely able to conceal their disapproval of what, to them, is your pretence, your sell out to society. It hurts so much.

I have days that I think of giving up.

But the truth is that I think I just need to give up giving up, because I really don't know how to truely give up.

If I had given up any of the many times I have felt like it over the years, I would have missed out on some special moments, growth as a person, learning just how wonderful and dependable God is and thus, how he values me as an individual. I would have missed some awesome pretty days (both rainy and sunny), and though I often feel very unworthy and unlovable, there are people who would feel loss and perhaps self blame if I "did the deed." I don't want to be the cause of anyone else's pain. Do you know what I mean marshabel?

From this tread I am gratefully reminded that none of us have chosen to get on this ride, but we are on it together nonetheless. Our only choice, if not for ourselves, then for our loved ones, and for one another, is to hold on and ride it the best way we can. And never surrender our dignity.

So we will have bad days. Lay down then. Then we will have a good day. Get up then, but rest whenever you need to. This is the rhythm for now.

You are not alone hon. I have been in denial with my Fibro since I was first diagnosed. And I was diagnosed by 3 different doctors. It's such a mixed emotion, knowing we have it, yet denying it at the same time. I was diagnosed in 1996 and I still try to deny my symptoms. Yet whenever there is something wrong with me, my doctor says, " It's your Fibro. It is a frustrating, sad, depressing, and aggravating disease, or whatever they have chosen to call it now. I just know it wreaks havoc on my life and I don't know what I would do if I didn't have people to talk to about it, such as all of you here at DS and the Fibro board. Hugs GB

I have been sick for several years now, diagnosed in 2007, but of course that's after suffering for years - at least since 1997 or so. I'm still in denial a lot of the times. I will overdo things thinking I'm fine on a 'good' day and then realize I'm not fine and be 100% so upset and angry and sad all at the same time as if it just happened...

Hi!

I was diagnosed last year in 2012. I didn't accept it. I figured God would not give me this. I was in pain a lot, and for the past couple of years before that, I found it popping ibuprophen to ease the pain after a workout, but it didn't work. My knees ached. It was hard to get off the floor during the day as a toddler teacher and infant teacher, Or when I ran my preschool class some days, I would get distracted easy, and get overwhelmed. Only when I was on the computer did my focus remained intact. I worked in the electronics department at Wal-Mart, and lifting TV's and computer gaming systems, and other freight, I would go home and cry from the pain, and couldn't sleep either.

February of this year, for the first time, I couldn't get out of my bed to go to work. I was in so much pain. I had an anxiety attack and I couldn't breathe well, and I was so depressed. The next day, I went in, and my doctor smiled and congratulated me on coming out of denial. Working with her right now, I am finding ways to ease the pain, since it never goes away, how to come out of the fog, and exercise without too much pain. I have also changed a lot of my habits. My doctor said to me that although there is no cure, I have to learn to adjust to this new chronic illness I now have, and how to explain it to people that when I have a debilitating day, I have to slow down and take it easy. rsimmons, thank you for posting this discussion. I thought I was the only person who felt the way you did.

I know how you feel...... I used to feel just like your avatar ...Face down in the dirt.

i do at times now still hit the wall of denial and get angry at what i have become due to fibro.

But now i accept what i have and the limitations it brings and no longer have feelings of guilt.

Yes Guilt! Guilt and shame that I am no longer the man I was... always strong , never wavering a good provider and i could conquer all.

It is healthier and comforting now to me, to accept that i am guilty as charged " That I am no longer Superman " but i am paying the pennance by surviving the pain both physically and emotionally.