Do you ever doubt Fibro yourself?

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So tired

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I'm new here, so hello. :)

I've been diagnosed 2 years ago. It took me very long to go to a doctor at all because honestly... I felt like a hypochondriac. After all, what's there to see? Since then it has progressed much faster than I thought it would. I thought it might be a come and go type of thing, as this is how it started. I'm really not doing well. I've been in pain for months now and the fatigue is unbelievable.

I still try to work full-time but start to wonder how much longer I will be able to do that. Again: there's nothing to see! Is it all in my head? The last few days have been so bad that I convinced myself it can't be just Fibro, I must have cancer or some other horrible undiagnosed disease. Then I read here, and other people go through the very same pain and fatigue... and have "only Fibro."

I work full-time, have 3 kids, and a work-o-holic husband, so it's basically me holding the fort. And guys... I'm tired, so tired.
 

missv

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Hi,

Welcome! I feel your pain, literally!! I was diagnosed in 2011 after years of being tested for everything else under the sun. I too felt like you did, started wondering if I was a hypochondriac. I even tried fighting through my pain hoping it was all in my head. Unfortunately it wasn't and isn't.

I'm also a single mother of 3 but two are pretty much grown. I always feel guilty about my youngest. I feel like he's being cheated out of a healthy mom. Thank goodness they each understand. I also work full time although lately I'm lucky if I can get outta bed.
I've tried too many medications to name but my most recent has been lyrica 150 mg twice daily. I feel high as a kite after about an hour! Recently experiencing severe elbow pain and neck pain, more than usual but again I'm fighting through the best I can especially since I'm a "football mom".

Sorry to go on and on but I wanted you to know you're definitely not alone. The pains and fatigue are definitely there! I wish you all the best and hopefully someday we'll all be able to get back to a pain free and normal life!
Soft and gentle hugs ��
 

vickythecat

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I am sure most of us here have doubted our fibromyalgia diagnosis, for many different reasons.

But honestly, I only have respect for you for being able to hold down a job, have 3 children and run a household. It is probably time to have a very serious chat with your family and ask for their help. I know this can be difficult, but otherwise you won't be able to keep going like this for very long before crashing down. So first talk to your husband, ask him to take over some household tasks. I don't know how old your kids are, but if possible, ask them to help around as well. This could be the most basic things like helping you with cleaning, organizing, cleaning up the mess, grocery shopping etc.

Also have a good look at your finances. Could you maybe work part-time? Do some research within your company whether it would be possible to change your working hours/decrease the hours, or maybe even work from home.

Plan your days off real well, never ever forget to take time off, only for yourself. Ask your husband to help you with that as well - so that he can take care of the kids for a couple hours while you rest. Do breathing exercises whenever possible at work, in the car, at home, while cleaning, doing the laundry etc.

And of course, speak to your doctor if you really think this is more than fibro. Write down all your symptoms/complaints. Go for a second opinion if you are not happy with the diagnosis. It is very important for all of us to become informed smart patients.

But once again, most importantly, ask for help.....from family, friends, doctors etc. Your well being is so important, especially because you have kids. They need their mama, they need their mama to take care of herself too. Just like the in the plane 'always secure your oxygen mask first, then attend to your children and others'.
 

Marvis

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I just wrote an artile about self-doubt on The Mighty! lol If you look for 'The Self-doubt that Creeps in with Fibromyalgia' that's me! :)

No Links Allowed!
 
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Marvis

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Answered this earlier but forgot and put in a link - oops. I literally just wrote an article about how doubting fibro has affected me. It's in The Mighty under chronic illness and is called 'The Self-doubt that Creeps in with Fibromyalgia'.
 

sunkacola

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I think it is very easy to doubt the diagnosis, because for one thing "fibromyalgia" is such an umbrella term. It is used too freely, I think, and used to diagnose such a hugely wide range of symptoms and severity of symptoms that it has become (or maybe always was) almost a meaningless diagnosis. Especially since from what I have read here many people with that diagnosis, who are taking the drugs that are supposed to help with this condition, are not feeling any better.

To me, this means the medications are often not effective, which leads me to believe that the diagnosis has been loosely applied and the medications are probably inappropriate for the conditions that those folks actually do have.

I have come to doubt my own diagnosis as well, for the same reasons. In addition, while the medications for pain that I was taking were only partially, and unsatisfactorily effective for me, it turns out that a medication that is frequently prescribed for depression is much more helpful to me than the pain meds are. I found out about it because a friend of mine told me it has helped her tremendously with her fibro, and so I asked my Dr. to prescribe it for me and he did.

The effect was not instantaneous, but now after taking the anti-depressant for over 2 months I have cut the pain medication from 2 to 4 doses per day every day, to only taking it when the pain flares up, which now comes to taking only one perhaps every two to four days. Huge difference. What I think is that the anti-depressant has cut down so much on my internal stress level that it has reduced the pain that much. My outer life is the same, but my ability to handle the stress is that much better. Mind you, it has not done much for the depression that I have quite frequently, ironically enough. but simply not being in as much pain is great.

Plus, not being in so much pain means I am more active. Being more active causes the pain level to be reduced and gets the body into better shape which also reduces the pain and disorder, so it is a positive cycle.

I would suggest to others, as my friend did for me, to try this approach and if you already have, maybe try a different anti-depressant. We all know how stress exacerbates the flare-ups, so anything that would help with that would help.

Now I wonder what the term "fibromyalgia" even means.

If it is something that, in some people, can be managed with psychiatric medication, what does that say about it? (I don't know the answer to this).
If others, with the same diagnosis, are not helped by any psych. medication, what does that say about their diagnosis being the same as those who are helped?
It doesn't really make sense, and this disease makes no sense. I tend to believe that in the future there will be no such diagnosis, and instead they will break it out into several things which, when properly diagnosed, can then be better treated.
 

diamond

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Its so good sunkacola you have found some relief with an antidepresant..i have been wondering where you have been as you havent been around lately.

So the anti depressant helps with stress but not depression..but like you say being in less pain will have a knock on effect on helping activity and relieving depression.

I tend to agree with you about the broad spectrum of this umbrella term 'fibromyalgia' for a host of symptoms all to differing levels.
 

Lou38

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I doubt myself almost every day, even today in a pretty bad flare. Then reality hits sometimes. I've been doing the same job for 2 years & the decision was made for it to be made permanent so I had to apply & interview. My boss was really harsh & wouldn't take experience into account, only the interview. Needless to say even though I interviewed really well fibro played a big part in remembering what I wanted to say & I lost out on the job. I now feel like I'll never get another job because of the interviews. Sorry for hijacking your post lol I just wanted to say that I understand completely how you feel. Denial is a very big part of this condition!
 

diamond

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so sorry Lou that seems soooo unfair you didnt get a job you had been successfully doing..what a kick to your confidence..life can be so unfair..my heart goes out to you...not least for still trying to work with this illness, i cant even imagine how you do that.
 

So tired

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I'm thrilled I decided to post here. Thank you all so much for your replies! It's uncanny how similar some of your experiences are, and while I feel sorry for everyone, it does help a bit to know that I'm not crazy (or at least not the only crazy person out there). ;)

I have stopped all medication that was supposed to help me manage my pain, as it simply didn't work. I'm taking meds for anxiety and depression, though, and they really help. That's doesn't mean I'm not in pain, just that I'm not anxious AND in pain. I try to take pain medication only when absolutely necessary and mainly over the counter ones.Unfortunately, I feel that Aleve seems to help but I was told it's not healthy for longer periods of time. So I try to keep it to 3 days tops and then pause for a week at least.

It's really hard to take time for myself because it tends to make me anxious. It's something I have to work on, though.

My family tries to help, but my husband is a bit absent-minded and works constantly and the kids are... kids. Helping today, forgetting everything about it tomorrow ;) and I always feel like I should be able to handle everything. I feel lazy sitting down, doing nothing in the middle of the day...

Also, I'm actually in the very fortunate position to work from home. I don't know how I would do it otherwise at all! On really bad days I have to lie down several times, so I basically switch from computer to bed and back. The downside of this is, I never leave my work. And stress is my worst enemy. Stress immediately causes a flare and I have a lot of stress. So in the evenings, I worry if I should work for just half an hour more so I won't be so time-pressed the next day... it just doesn't leave me. Still, I shouldn't complain. At least I HAVE the possibility to lie down for a minute! so many of you don't. Or have to deal with a situation like Lou's. (So sorry!)

So again, thank you for sharing, and thank you for your advice and time!
 

Marvis

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It took me a full year to even accept that I had fibro and that I needed rest. I've pared everything down to where I'm only doing essentials - I have the luxury of a spouse that can support me financially. Anytime I add anything to my schedule and the stress increases the tiniest bit, my symptoms sky rocket. It's taken me a long time to accept that. I'm good with it right now - until someone asks me what I do lol lol. But I figure, the easier I take things, the longer I'll be well. At least I hope so. It does take your family awhile to get it and it's hard for us as moms to express what is going on - it feels so much like whining. But if we don't vocalize, they won't understand. Try to have good conversations with your spouse about it. Sometimes they are more supportive than you think. Mine doesn't always say what he's thinking. It took me bursting into tears in a very nice restaurant on a date for him to say some of the things that I needed to hear. He assumed I knew that he still loved me and didn't resent me and fully understood that I was doing as much as I could. They don't alwasy get taht they need to say it out loud. lol. And kids. I find that, yes, they forget and they still need mom to be mom, but they do tend to step up when you really really need them to.
 

Candy

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I was just diagnosed the end of May of this year. I had been managing but I had a 3 week trip to Uganda in June and then when I got back I worked at VBS all week. Last October I had a surgery that takes a year for full recovery. Now I feel like I'm in constant flare mode. I don't know how to manage and I have become depressed. I had an interview this week for a full time job. It would be a good opportunity but I don't think I could physically manage. It is so frustrating. One good day makes me think I could do it but then I have 2 bad days. I just don't know what to do. I too really wonder if I truly have Fibromyalgia.
 

sunkacola

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Candy, I think the problem is that none of us have fibromyalgia because it doesn't really exist as just ONE disorder, like Chron's disease or diabetes. It is an umbrella term, and I think it will become obsolete when the medical establishment figures out what are all the different disorders that make up what is now called fibro.

But until the researchers decide to focus on that, it won't happen, and too many people still don't believe that fibro is real. Well, I understand that, and I don't think so either.....but the various symptoms of whatever it is that is wrong with each of us ARE real. And that complicates the whole thing tremendously.

Then, of course, you have the mental and emotional components, which tend to spiral downwards because of the physical pain, and then the poor mental and emotional states tend to exacerbate the pain and so on.

Mental and emotional states are not taken into account enough by the medical establishment. They treat them as being separate, which is utterly ridiculous. The body is one organism! Everything affects everything else.

I honestly think that for many of us the answer lies in whatever will make us feel less stressed and better emotionally. I think that it is different for each individual, though, what will do that. For some, a medication will jump-start the process. For others, maybe a diet change or forcing themselves to exercise or take up a hobby or whatever. But I don't think anyone can tell another "do this and it will help" because everyone is different.

Anyone who says to you that you should do a certain thing and then if you don't, or it doesn't work for you, tells you that you don't really want to get better or that you are not trying hard enough, is being abusive.

I do think that simply not giving up is the most important thing.

I have done things a number of times in my life that people said I couldn't do just because I did not give up.
sometimes it will take longer than you want, be harder, whatever. But if you simply believe strongly that you have to do whatever it is, and therefore you will do it, and you just don't take no for an answer, eventually you will find a way.
 

Lana

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Yes all the time! I doubt that I have Fibromyalgia on my really good day's, I think maybe they where wrong and I'm all better now. Then on my really bad day's I doubt that my life can keep going on like this! I doubt my strength and coping skills. It's a cycle for me that never ends going between Hope and disappointment. There is much more then pain that we all have to deal with, So much more then the pain alone! I really wish people could see how hard it is living with Fibromyalgia and how it severely effects your life!
 
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