Posts Tagged ‘CFS’


Using All The Spoons

Using All The Spoons

I think I’ve said that flare-ups suck donkey balls.  I’m fairly certain that I’ve said it, but if not, I’ll say it now.

Pain flare-ups from Fibro suck donkey balls.  Especially when said flare-ups last more than just a few days or a week.  I’m going on a little over a month.  Feels like it’s getting worse instead of better.  I can understand why some who have Fibro turn to narcotics or to medicinal Mary Jane.

I’ve been in such a bad pain flare-up that I just can’t seem to get out of it, and I’m having trouble now caring about how I handle it.  Not caring about avoiding trigger foods; it’s an effort to ignore the danger foods at picnics and as a guest at someone’s house.  Not caring about how much pain I’m actually in as long as I can rest and not think about much.  Reading helps.  I doze if I watch TV.  The chronic fatigue hits badly during this flare.

I can’t even muster up enough energy to feel discouraged.  My body is tired, my brain is tired, and I’ve been feeling Mom Guilt over not being available for all of the girls’ school things the way I should be.  The way I promised I would be, and I promised wouldn’t change when I went back to work.  I never imagined my weekends would be for recovery and I would dread going out anywhere most times on a weekend, especially on a Friday after work.  I dread going anywhere on a day after work.  I’m off today, though, to attend a PPT and for another appointment.

Since starting work again, my social life has definitely tanked.  I’m just too tired.  Friendships have suffered.  My wallet enjoys the paycheck for sure.  So do our groceries and bills.  But I’m nearly too tired for anything else.  Gracie frequently asks me when my boss is going to fire me.  My youngest, 9, recently informed me that she also hates it when she’s home and I’m not there to greet her off the bus.  The girls are all three of them upset that the “new” routine of 19 MONTHS now means I’m not home as much as they’d like.    They’re upset that I’m in more pain more often, and it seems to them I’m more tired all the time.  I probably am.  So, you know, Mom Guilt.  Especially when I have to send The Husband in my place.  The sad thing? The girls are getting used to it and don’t complain much any more when I’m in so much pain or feeling so sick from the pain that I can’t go with them all.

Weekends are usually used, when possible, to recover from the week.  I try to take it easy and do what needs to be done at a leisurely pace.  Of course that isn’t always possible.  The flare is not going away, and I wonder if my inability to have any sort of recovery time is to blame.

The past two or three weekends were unheard of.  Just on Memorial Day weekend: two birthday parties and a barbeque, one party for each day of the long Memorial Day weekend.  This weekend we had my beautiful niece “Kay” sleep over and she’s just a joy to have around no matter what.  Thinking about her is making me grin while I write this.  Then Sunday after bringing her home, we celebrated three more birthdays and stayed out all day long.  I overdid it both weekend.

I did wake up with a new pain in my right shoulder which could be due to being manipulated and maneuvered by my PCP yesterday at my physical.  I could have slept wrong last night, but in any case it’s there.  Sharp.  Worsens when I walk or move my left arm (what???) or turn my head or try to flip pancakes.  I’m going with “happened during the physical because of how she made me position myself.”  OH!!! I’m so special that she likes to see me for an annual physical every six months now.  ::sigh::  But here’s why I love her: she has clearly done a lot of homework regarding Fibromyalgia.  She wasn’t quite as knowledgeable the last couple of times I saw her.  She was ok with the knowledge but a lot of it had been somewhat outdated.  This time she was on the ball and up-to-date and far more compassionate.  She’s always been compassionate but she was able to connect so many issues I’ve had for years and asked me a lot of questions and said,

“Oh, don’t blame yourself on this.  It’s the Fibromyalgia.  You try.  You work hard.  But you still have the Fibromyalgia and that makes it harder.  I’m not worried about your weight.  Maybe you now pay attention and eat more calories and get more fat… your body is making too much sugar and you don’t get enough calories.  But you eat right, you are active and you work and spend time with your family.”

I do love this doctor.  She’s really good, with a great bedside manner.

I was so anxious about going to that appointment.  I always have anxiety going to my physicals.  When I walked in yesterday it was an increasingly high pain day, and she noticed.  I think everyone noticed.  I think I’ve fooled myself into believing that when I’m having breakthrough pain, pain that my Gabapentin can’t reduce my daily pain to “still hurts but is tolerable and can be ignored,” I can still hide the face that I’m having severe pain.  Pain that, if I weren’t taking the Gabapentin I would be writhing on the floor crying.  Anyway, she noticed and was very gentle and I could see the compassion on her face.  I didn’t see that compassion on my rheumatologist’s face.  I’m still certain that my rheumatologist thought I was drug-seeking.  Luckily my PCP knows me and has since I was 25.

We actually talked about that yesterday: pain management and being fearful of looking like a drug-seeking addict.  She turned to me and said,

“Don’t ever say that.  You need to manage the pain.  Pain is not good for the rest of your health.  If you’re in pain, you can’t be healthy or do anything.  Besides, you went far too long to even ask for help managing your pain. ::scoff::”

And then I remembered how she has tracked my pain, and how when I asked her how to go about diagnosing and getting a rheumatologist, etc, she chastised me for waiting so long to ask for help managing the pain (gently and like a mother).

I know, pain is a bummer of a topic but hey, it’s sort of in my face right now.  It’s not really a bootstrap moment.  But that’s another blog entry.

I know I have a lot to be grateful for.  I’ll even do a gratitude journal, which I haven’t done in a long time.  It’s not about not being grateful.  It’s not about not counting blessings.  It’s about, well, the nature of depression, anxiety, and the pain that came and triggered it.  The pain is just so much to deal with that I think when it gets this bad for so long, my brain breaks a little bit.  My word recall and memory are sucking wind.

Hell, just do a search in my search bar for “fibro fog” and Fibro and you’ll find a mess of stuff about why I feel this way in my brain.  My brain is so foggy right now I don’t think I can go through the whole fact thing again and repeat it in this entry.  It’s already taken me five or six stops and starts and several revisions on this entry.  🙂

I know I’ll shake it off eventually.  For now I think I need to feel this.  I need to go through it and cycle it.  I make great efforts to remain positive as long as possible every day, but I admit that it’s much more difficult when the pain is so high and I lose hair in handfuls from the flare up, sometimes three times in a week.  Maintaining the positivity and the hope for extended periods of time… well… that can feel fake and make the anxiety and depression feel worse.  But then I don’t want to bring anyone else down.  That feels stressful and… I snap.  And I know I’m not as nice as I should be.  I find it harder to censor my brain-to-mouth stuff, and people look at me funny.  Well, half the time it’s probably because it came out with words in the wrong order or I stated the definition of a word instead of the word itself.  But with my nice-filter off… oh, I’m not nice.

I can be vicious.  I don’t like being vicious.  It’s worse if I feel as if someone has personally attacked my character and motives.  It’s much, much worse if I don’t get my morning coffee.

Pain, pain, go away, come again, like, never.

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The secondary somatosensory cortex is colored ...

The secondary somatosensory cortex is colored green and the insular cortex brown in the top right portion of this image of the human brain. Primary somatosensory cortex is green in the top left. (Photo credit: Wikipedia)

 

I know it’s been a while since my last installment of Nitty Gritty, but here we go.  I’d like to discuss the actual changes to the body, particularly the brain, that occur in people that endure the chronic pain of Fibromyalgia and the associated Chronic Fatigue Syndrome (CFS).

 

There are actual physical, structural changes to the brain in people that suffer from chronic pain of disorders such as Fibromyalgia.   With an estimated 3% of the population suffering from Fibromyalgia, it’s important that we look at the effects of pain on the body and the brain in addition to the causes of the pain.  The effects of the pain are why we need a cure.  Sure, pain itself sucks.  That in itself is a reason to find a cure but long term chronic pain actually has effects of its own.

 

Check this out:

 

Structural brain changes in chronic pain reflect probably neither damage nor atrophy (click here).

Source

Department of Systems Neuroscience, University Medical Center Hamburg Eppendorf, Hamburg, Germany

 

Chronic pain appears to be associated with brain gray matter reduction in areas ascribable to the transmission of pain. The morphological processes underlying these structural changes, probably following functional reorganisation and central plasticity in the brain, remain unclear. The pain in hip osteoarthritis is one of the few chronic pain syndromes which are principally curable. We investigated 20 patients with chronic pain due to unilateral coxarthrosis (mean age 63.25±9.46 (SD) years, 10 female) before hip joint endoprosthetic surgery (pain state) and monitored brain structural changes up to 1 year after surgery: 6-8 weeks, 12-18 weeks and 10-14 month when completely pain free. Patients with chronic pain due to unilateral coxarthrosis had significantly less gray matter compared to controls in the anterior cingulate cortex (ACC), insular cortex and operculum, dorsolateral prefrontal cortex (DLPFC) and orbitofrontal cortex. These regions function as multi-integrative structures during the experience and the anticipation of pain. When the patients were pain free after recovery from endoprosthetic surgery, a gray matter increase in nearly the same areas was found. We also found a progressive increase of brain gray matter in the premotor cortex and the supplementary motor area (SMA). We conclude that gray matter abnormalities in chronic pain are not the cause, but secondary to the disease and are at least in part due to changes in motor function and bodily integration.

*There’s another article here: http://www.sciencedaily.com/releases/2012/07/120701191611.htm

Okay, so that means that there’s a possible explanation for the infamous Fibro Fog, which is a type of cognitive dysfunction that many people with fibromyalgia have during particularly bad and/or extended pain flare-ups.  Symptoms include difficulty with concentration, memory deficits, difficulties using language, difficulties learning and retaining new information, and confusion.  Some sufferers of fibromyalgia and researchers have suggested that Fibro Fog is caused by sleep deprivation, depression, nervous system disturbances that cause the brain the receive less oxygen, but the majority of research doesn’t support any of those hypotheses.

Not only that:

Futurity.org – Chronic pain alters how DNA works in brain.

Chronic pain alters DNA marking in the brain | Newsroom – McGill University.

and this:

Structural changes in chronic pain.

It’s a lot to think about.  It’s not ALL in our heads… but some of the effects are.  In the next Nitty Gritty I’ll introduce the discussion on the effects of chronic pain on the body.

 

 

 

 

 

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FIBROMYALGIA

FIBROMYALGIA (Photo credit: *SHESHELL*)

This could be really good, really big news for those of us who have Fibromyalgia.  If there’s a known source and cause, then that means there’s a higher chance of finding a cure… and finding it faster.  Or at least drastically reducing the pain.

Rational Biological Source Of Pain Found In The Skin Of Patients With Fibromyalgia (click here).

There’s also this article: 10 Causes Of Fibromyalgia Your Doctor Doesn’t Know About (click here).

I hesitated to share these articles, though, because nothing in them can really be certain.  Fibromyalgia is different for everyone that has it.  The types of pain are different.  The cycles are different.  What triggered the onset of the Fibromyalgia is different.  The progression of the disease is different.  Exacerbating factors are different.

There’s also the fact that while I’ve only had the diagnosis for a couple of years, I see the history that others I share the diagnosis with have gone through.  There have been supposed breakthroughs before.  Hopes are raised and then dashed.  What works for some doesn’t work for most.  I’ve experienced this with Cymbalta.  It works great with anxiety, to a point, but doesn’t do a single thing for the pain.  That has my shrink baffled, but I’m not surprised since she comes from the stance that chronic pain due to Fibromyalgia is actually psychosomatic and caused by stress, depression, and anxiety.  I do have those things, but they’re not causing my pain.  Not when those factors are under control.  And not when the pain is what makes my depression and anxiety worse rather than the other way around.

Anyway.

My real purpose was to get these articles up and shared.  I have some other issues I’d like to discuss but I’m feeling foggy and jumbled.

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