Cost Benefit Analysis Ramblings

This fibromyalgia thing is doing my head in.

Every day I am trying to gain more knowledge about this illness that has hit me like a 10 tonne truck.  It doesn’t help that I am in pain, I am more exhausted than I thought possible, and sometimes my brain just seems to turn to mush… without warning.  I’m wondering why I get out of bed in the morning, especially when the mere act of getting out is both a war on the fatigue but also a revelation of what is going to be painful today.  I know enough that anyone with fibro struggles with this every morning but I also know that if I don’t get myself out of bed I am quickly going to slide into a deep hole of depression.  And I don’t just mean a bad day where I feel sorry for myself.  I mean the chronic depressive disorder I have faced so many times before.

I think what is hardest right now is knowing who to listen to, who to believe and how to work out what is right for me.  Since my diagnosis a few weeks back I have been repeatedly told by health professionals that physical exercise will help.  Interestingly that’s about the only thing they have been able to tell me, apart from telling me that I can’t have any effective medication for it and that I should simply accept a life of codeine addiction.

What is confusing is that when I talk to anyone who has fibro I am told exercise causes pain.  And now I have worked that one out for myself.  A few days ago I went for a walk.  At the most I might have walked 1.5 kilometres, on flat land.  That’s not far.  I haven’t been exercising regularly lately (because of how bad I feel) but not that long ago a five kilometre walk would be nothing.  But this time? By the time I was finished I was exhausted.  My feet ached, my calves felt like they were exploding and my hips were feeling stiff.  Moving took effort.  What I have learned is that the next day is the test and I can tell you I was so sore.  My feet always ache but now my hips hurt every time I moved and my back was suffering.  I think it is only natural that I ask,

what did I do that for?

After two days of exhaustion and pain I am moving again and I headed off this morning to see my newly found physiotherapist who is teaching me the skills of cognitive behavioural pain management.

I think it is important to say at this point that I failed cognitive behavioural therapy (CBT) when I was being treated for depression.  Yes failed.  To the point where those involved in trying to teach me this gave up.  Actually I was discharged from the local adult mental health outpatient service because I had not responded to CBT and the psychiatrist in charge didn’t know what to do with me.  Simple, “take her off my books and then I don’t have to worry about her!”  It made me feel great!  Actually it didn’t and as an aside it didn’t help that the Eating Disorders Service and recently taken a similar approach.

When my rheumatologist recommended I see this physiotherapist I was doubtful.  Mention the words cognitive behavioural and I am ready to run a mile… except I can’t now because I’m too much in pain and fatigue.  I have now seen him twice but have to admit that at the end today I avoided the issue of another appointment.  But that’s because I am confused and I need information, reliable information.

I questioned him on why I would want to exercise when the result is so bad.  I understand why in a normal, healthy situation regular exercise is recommended.  But why is it recommended by medical professionals for treatment of fibro when all it seems to do is make my symptoms worse?

Apparently if I don’t exercise, my fibro symptoms will get worse.  Is this true?  I don’t know but it took 30 minutes to get that out of him, there was a fair amount of avoidance to get there.  And according to him if I regularly exercise at a level appropriate to where I am at, I can beat fibro.

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This was the first time someone had told me that it was possible to beat fibromyalgia.  I’m wondering, is this true or was he telling me what would stop me asking difficult questions.

I was referred to a book ‘Explain Pain‘ to help me understand why my head is doing this.  Because apparently it is all in my head and that is why I walk but I end up with a sore back rather than sore legs.

The thing is I don’t know who to believe.  Those of us who actually experience this illness on a day-to-day basis tell a different story than health professionals.  And my experience to date is that health professionals have given me very little information even though I’ve constantly been pushing for it.

I recently said that I didn’t think I needed to understand something in order to believe that it worked.  I’ve changed my mind.  I don’t get fibromyalgia.  It makes no sense.  Perhaps that is why I failed CBT when it was applied to my mood.  Perhaps now I am failing it again.

I would love to hear your thoughts if you have fibro or have knowledge about it.  What do you think?  Is it possible to beat fibro?  Only this afternoon I read on a site that fibro symptoms don’t decline (if I don’t exercise) and it isn’t possible to recover.  So you tell me, what do I believe?  I’m confused.

Actually I think I’m having a bad day.  This has left me grumpy with everything.  All I want is a straight, consistent answer.  Is that too much to expect?

Meanwhile have a great day yourself.


12 thoughts on “Cost Benefit Analysis Ramblings

  1. reversinginsanity

    I have found a blog of someone else with BPD and Fibro that I’ve been reading…. let me find her page and maybe you can get some insight from her personally??

  2. Honey, calm yourself. Take a deep breath and relax. Done that? ok, first, the bad news.
    There is no concrete information on our disease. It still baffles and frustrates most doctors and sufferers. There are a LOT of websites out there that claim to cure fibro. One claims that it’s an allergen triggered illness, caused by what we eat. Another claims it’s autoimmune while yet another says it’s psychological. Noone knows for sure what causes it.
    There is no absolute cure for fibro. No pill to take it away, no exercises that will magically remove stiffness or soreness. Psychotherpy helps some with handling the pain, mentally and helps some with depression. What works for me may not work for you. Just like every other disease.
    Good news is, there are ways to exercise without the stress that even gentle walking can put on overly stressed muscles and pain receptors. Swimming is an excellent exercise BUT not the oympic stuff. Gentle dog paddling, floating, Water walking and other slow, gentle movements only and, if possible, in a heated pool. I’ve found, for myself, that if I get into a cold pool, my fibro flares up HORRIBLY. Meditation, if you can manage it, is good as is gentle yoga and stretches. What happens to a lot of we fibro sufferers is something called deconditioning. Our muscles weaken because of the pain we suffer when we engage in any exercise. Gentle stretches and swimming will help to recondition our weakened muscles (or so they say) and possibly will help us stop hurting.
    Some people DO recover. My mother had fibro when I was in my teens and has made a full recovery. I haven’t made i that far yet but, if it happens he way hers did, it’ll be over in the next year or so. Here’s hoping! I think, personally, the worst thing is not the pain but the unsurity of our disorder. The fact that noone knows WHY we’re hurting or tired or how to cure it. It sucks. Probably the best thing I’ve found is that there is a whole network of fibro sufferers that can commiserate with you on your bad days and TOTALLY gets where you’re at! When you can’t do much more than post a couple of words of misery, we understand. When you’re pissed at the disease and taking it out on the world, we can say, I’m there with you and MEAN IT! You aren’t alone. Blog, talk, email, whatever helps. Theres a world of us waiting to hear from people like us!

  3. Hi, I know you’ll be able to improve the fibro to the point where you can have a life that you want. I found that acupuncture helped the most at first, and then I added other things to the mix. It does take a long time though. I’ve spent three years getting acupuncture once a week, if possible, and it didn’t really kick in for several months. Then, slowly I improved to the point that I could get out of bed and walk the dogs. Now, I am pain free when sitting still; mostly stiff and a little sore when I stand up after sitting; and I can walk slowly for a half mile at time. If I rest I can then go for another half mile, although my running days are long over. Last week I walked for hours in New York City, but stopped for a glass of wine a couple of times, and when I was in the Metropolitan Museum I sat on every bench I found, even if I didn’t really need to. The brief rest made all the difference.

    About 5 months ago I found a naturopathic doctor who discovered I had a SLIGHTLY under active thyroid. He’s been juggling the very low dose meds and I feel like a new person. Most people with fibro have a quirky thyroid. And, he added a TINY amount of hydrocortisone, something I was against at first. It is such a low dose (10 mg) per day that it is something I could take forever without any side effects. The usual low dose is 40. But, that tiny amount has made a tremendous difference in the pain. I think it has helped the arthritis, which then doesn’t move on into fibro pain. I am a new person.

    On top of that I’m taking a lot of vitamin and mineral supplements, to be certain that I have absorbed enough. And, he found that I need a lot of B-12 and folate (not folic acid) for high homocysteine levels. Also common with fibro folks. I also use a magnesium gell, which is great for pain. And I do more, including pulsed magnetic therapy. It is a full time vocation, but worth every minute of effort.

    I want you to know that there is lots of hope. I was suicidal a couple of years ago and just hoped that I’d get hit by a truck. I wasn’t depressed, just exhausted from the pain. I also stopped all the anti-depressants and other garbage that just made the fog worse and really did very little for the pain. I also fell a couple of times when on Cymbalta and the last time I put a permanent dent in my forehead!!!

    Please stay hopeful and upbeat and don’t let it all drag you down as much as I did. There are things to do to make life better.
    Hang in there.

    1. Thank you. Your support, ideas and encouragement are greatly appreciated and it is good to hear from people who experience all this everyday. And I have to say walking with the odd glass of wine sounds like it would make all the difference. LOL. Thanks.

  4. Thank you. I so appreciate you taking the time to comment and I think you’re right that the lack of certainty is what is bothering me right now. I like to know what I’m dealing with and with this I find out each morning. Thanks too for telling me about your mother. That gives me some hope and I hope for you too that a receovery will come soon. 🙂

  5. I’m with livingwellwithfibromyalgia…I LOVE my warm water & hydrotherapy classes. If I could stay in that water forever, I would. It seems to let everything work properly for me again. And, getting there early so I can have a float, is heavenly.

    1. Thank you. It is SO good to hear that and I’m getting the impression I should head to the pool. My next problem is where to find one. Most pools in my city were destroyed by our earthquakes. But I’m not going to let a little thing like that put me off. Just the idea of floating sounds very heavenly. 🙂

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