Posts Tagged ‘Fibro Fog’


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.

Advertisements

Read Full Post »


Fibromyalgia  Fog - Cognitive Dysfunction Image Source: "Fibro Affirmations" support page on Facebook

Fibromyalgia Fog – Cognitive Dysfunction
Image Source: “Fibro Affirmations” support page on Facebook

It’s hard to explain Fibro Fog to someone who has never experienced it, or to someone who has never seen it in action.  My office mate at work has seen Fibro Fog do its dirty work on me, and she described it once as if my brain got stuck like a needle on a record.

Repeatedly.

When it happens to me it feels like everything slows down.  I’m painfully aware that my word recall is stuck.  I’m painfully aware that:

  • I’m pausing for too long
  • that I’m stammering and it’s annoying to others
  • that I’m speaking too slowly in order to use the correct wording and
  • so that I don’t stammer
  • that my brain to mouth filter sometimes doesn’t kick in
  • that I sometimes forget what I’m saying in the middle of saying it
  • that I often transpose words and phrases when I speak them or write them
  • that sometimes I have to read and reread something for it to look like English
  • that sometimes I have to ask people to repeat what they’ve just said because although I heard it and recognized it as English, and know that what they said was likely very simple, I didn’t understand a word they said.  And I blame it on not hearing well.
  • that I have to write down everything in order to remember it; that math intimidates me and when math is involved it takes me much, much longer to complete a task.
  • that I sometimes feel like I have ADD, but I know it’s not.
  • that all of these things make me feel anxious, because I feel like I’m missing something important and it’s going to be harmful to someone at work or my children or my husband if I don’t remember what it is.
  • that my coordination plummets, and I can’t do simple things like put a key in a keyhole and my balance (which is already shaky) also plummets.

Luckily, this is not every day.  It happens during migraines.  It happens during very bad pain flare-ups.  It happens during extended pain flare-ups.  Sometimes it does “just happen” although admittedly, if I sit down and think about it, I can usually trace it back to sleepless nights I had due to severe pain during the night.

It’s not just at work when these things happen.  Like sitting with a consumer and trying to listen to an issue they have, and then trying to help them come up with a solution to something and I’m trying to explain my suggestions.  Or I’m going over steps in the process of how we’ll be reaching goals.

It happens at home.  I could be cooking and step away from stove for a moment because what’s cooking can wait for a few minutes.  Except I need to set the timer if it’s not something that can burn or even cook off like a pot of boiling water.  Yes, I can burn boiling water.  It’s not a joke.

When I’m driving, I sometimes forget to take turns even if it’s a place I go to all the time.  I go to the grocery store 3.5 miles away.  I once forgot how to get there at all.  My dentist is even closer than that, and I’ve forgotten how to get there numerous times.  Even though I’ve been going to the same OB/GYN for 20 YEARS I’ve been needing to use my GPS to find her office.   I forget important items on a grocery list or when running a specific errand … even when it’s written at the top of the list.  And it’s the main reason for the trip in the first place.

What helps me? Sometimes…

  • Giving in to a nap.  Attempting to get more sleep.  Except that doesn’t always help because honestly, the reason I’m in the fog to begin with is a particularly bad flare-up which means sleep will be fitful.
  • Heat therapy.  A hot shower is relaxing, and can help with sleep and anxiety.
  • Yoga.  The stretching helps blood flow, and it temporarily helps my mobility.  It also helps get the blood to my brain.
  • Simple sugars from fruit and veggies.  I try to cut down on refined sugars.
  • Walking.  Movement even when I don’t feel like it.  Getting my heart rate up.   It’s easiest to exercise if I can go swimming.  Feeling the water take the pressure off of my joints helps immensely.  It helps relieve pain in a way other things can’t.  Of course, after getting out of the water there’s a heaviness that you feel that’s just… well, it feels like you’re being pulled into the ground.
  • Getting fresh air.  Communing with nature.  Stopping to smell the flowers, as long as I don’t have to bend down.  Because that hurts.  But there’s something to be said for “clearing your head” with some fresh air.
  • Prayer.  Prayer is like meditation, and helps me focus.  I do a daily Bible devotional as often as possible… which means “when I remember.”
  • Get as many fatty acids, amino acids, and antioxidants from natural food sources as much as possible.  I Spicalso take some supplements.
  • Spices and teas.  I find them comforting as well as therapeutic.
  • Having gone vegetarian.  Well, pescatarian.  It’s been nearly a year.  I have trouble digesting meat, and I feel full body pain when I do fall off the meat wagon.
  • Staying hydrated.  Dehydration can lead to a myriad of problems for anyone, and the problems are magnified for the 30+% of Fibro sufferers that get Fibro Fog.

And sometimes nothing helps at all.  I can do everything “right” and still get caught in the fog.  It’s like it’s night time, it’s pea soup fog, and I have my high beams on.   But you know, as I was researching some helpful articles to add to this post I stumbled upon an article that included a link to Fibromyalgia & Fatigue Centers.  I actually found one a couple of towns over from me.  I may just have to give them a call, especially since the rheumatology offices around here won’t even call me back to tell me if they’ll take my referrals from my doctor and if they do, they’re not taking new patients.  Or they don’t specialize in Fibro.

Cross your fingers and toes, and if you’re the praying type…

Related articles

Read Full Post »


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.

 

 

 

 

 

Read Full Post »

%d bloggers like this: