Disappointment

So, after a day and a half of improvement, today is not going well.  I woke up aching before I  even moved out of bed.  The tinnitus is bad today, and the newest symptom, which I’ve had on and off for a week or two, a burning sensation in the soles of my feet, is so bad I don’t want to put my feet on the floor.

It’s extremely discouraging.  I had really begun to believe that the Neurotonin was helping; I suppose it still may be, but it would have been awfully nice to have more than 36 hours of relief.

The noise in my head is so distracting I can’t knit; added to the distraction of my soles being on fire and my threshold of stimulation is so over the top I can barely keep from screaming.  The TV is alternately too loud and too soft, sometimes both at the same time.

I’m trying to distract myself with more pleasant things but not having a ton of success.  The current political debate is too depressing to even try to contemplate.  Going to go teach Eric how to braid…

Second Guesses

It’s so terribly easy to begin to think that these nebulous, non-specific, not objective kinds of symptoms are all in your head, that really you’re just lazy, or your muscles have atrophied, or some other thing where it’s all in your mind, or somehow your fault that you’re not doing the things you should, or even want to do.

It’s on days like today that I realize how much I second guess myself.

Today, after several good nights’ sleep, I woke up feeling a bit more energetic, a bit less in pain, a bit more hopeful.  Every time I wake up like that, feeling better, I just start in, doing things.  Cooking, cleaning, interacting with the kids, whatever is there.  Without thinking about it.  I just DO it.  It makes me realize again that no, I’m not lazy. I’m not avoiding work.  I’m not exaggerating my pain or fatigue. I do things when I can.

All my adult life (I’ll exclude my teenage years, as my mother would probably refute it, with cause) I’ve never shirked from work.  I’m not always the greatest at figuring what needs to be done, but if someone tells me “this needs doing” I pretty much have always just pitched in and done it.  There are even household chores I actually enjoy; laundry, washing dishes, sweeping, even mopping floors sometimes (though I admit, my house does not always indicate such.)  I have felt so guilty over my inability to do these things lately.  Washing dishes had become really painful, even when the fatigue was better, that I’d taken to leaving even just a cereal bowl in the sink, because the thought of the pain involved in standing there to wash it for 3 minutes was too much.  I hate leaving my mess for others to deal with.

I don’t know if it’s the new medication actually working, or just a cyclical reprieve.  I hope it’s the medication, as that would bode well for the future, but whatever it is, I’ll take it for as long as it lasts.  Another blessing to count.

 

More On Pain

So, I’ve accepted that pain is going to be a part of my daily life.  The question remains: how to cope?

I can’t take ibuprofen anymore; it causes tinnitus. I have a consult pending with an ENT to see if there’s an organic cause, but I know for sure that taking ibuprofen makes it worse, so it is now reserved for severe headache, balancing the benefit against the consequences.

I had been taking Vicodin, about one a day.  I gradually, without even thinking about it much tapered myself off; it just doesn’t seem to help a whole lot.   I now take one a week or so, usually on the days where I have to work, and the pain is severe.

I saw my doctor Tuesday, after work.  I was in pretty bad pain when I saw her, about an 8.  Verge of tears kind of pain.  I hadn’t taken a Vicodin for work that day, because I wanted her to see me in pain.  I explained why I stopped taking the Effexor, and said I was open to trying a different SSRI, so she prescribed Zoloft.  Told her about not being able to take ibuprofen for pain, and she said we could try gabapentin (Neurotonin.)  Gave me prescriptions for both, told me to start them about a week apart.

After doing some internet research, I decided to start the gabapentin first.  It’s an anti-seizure medication that often helps with neuropathic pain.  I read many reviews of people with FM who have used it successfully to reduce their pain.  So I took my first dose last night.

The main side effects are drowsiness and dizziness.  I have never really had a lot of side effects from medication, so I was hoping I wouldn’t with this.  It’s only been twelve hours from taking it, so my experience is limited, but it did make me pass out on the couch, which after several nights of insomnia was a good thing.  Less of a good thing was being unable to move to the bed without help.  Even this morning, I’m dizzy, in a weird way.  I’ve been having bouts of dizziness, vertigo, which I absolutely hate, worse than pain.  With pain, I can still function, though it hurts.  With the vertigo, I’m down for the count; can’t do anything.  Can’t drive, can barely walk to the bathroom.  It’s totally debilitating.  Luckily, it’s only happened a few times.  With the gabapentin, this dizziness is a little different; it’s almost like being drunk without the euphoria.  I’m not nauseous, which helps; with the vertigo I am.  If I move slowly, it’s reasonably manageable, though I don’t think I’ll be driving.  I’m trying to find out from other users if this is a temporary thing.  And a dose related thing.  Right now, I’m on a very low dose; therapeutic  dose could be three, four, or even five times the dose I’m on.  I haven’t really noticed any effect on my pain, but I wouldn’t have expected it to happen this quickly anyway.  So I’ll try it for a week, see how it goes, then try the Zoloft.

A friend pointed me this morning to a link that discussed pain in a really intelligent, thoughtful way.  Chronic pain is so hard to quantify.  I’ve had some severe pain in my life; childbirth, though that wasn’t nearly as bad as I expected (I’d rate it about an 8), and the headaches when I had meningitis  and the pain from gall bladder attacks were both bad enough to induce vomiting from the pain alone. So that’s what I rate as a 10 on the numerical scale.  The most severe pain I can ever remember.  Contrasted with that pain, my day to day pain rates about a 5.  The problem with that is that five isn’t horrid.  Until you realize it’s never going to end.

That post linked to this one.  One of the comments on this post made a wonderful analogy; I’d like to give attribute but the poster was simply named as anonymous.  Here’s what this pain sufferer said:

I wonder if one of the biggest challenges with classifying pain is the fact that there are 2 types, transitory & chronic. Transitory pain can be excruciatingly awful, such as a broken bone, or a migraine, or childbirth… but it goes away. A few days of medication, and there is a resolution. It is clear that it can be “fixed” by drugs, breathing techniques, meditation or distraction techniques.

Chronic pain is a trickier beast. If you have a rock in your shoe, it is not a pain worth mentioning. It is a 1 maybe a 2. The assumption is that the rock can be shaken loose, that the foot will soon be comfortable again, since it is a small pain. It isn’t much, really, just a little thing. An aggravation in your shoe.

But it isn’t a little thing at all.

At first, it is an annoyance, really. An aggravation, if you tend towards anger. But after a while, the pain dominates your thinking. All you can think about is how long until I can take the pebble out of my shoe.

You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower. When that doesn’t work, you walk faster.

You buy better shoes. You buy a cane. You take Tylenol, and Advil, but the pebble is still there.

You try hopping. You try crawling. Still a pebble.

Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining.

“What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? I can barely think past the constant background noise of the pebble! How am I supposed to work as well as I used to?

But of course no one else can see the pebble. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Pain is a transient thing, after all. No one could REALLY be in pain ALL the time.

Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say.

Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

Chronic pain doesn’t have to be a strong pain to have a strong effect on your quality of life. Even a chronic pain of 2 or 3 should be taken as seriously as a chronic pain of 7 or 8, because your life changes in so many ways.

And it doesn’t just affect the person with the pain. My kids are 6 & 8 and my daughter has never known me when I wasn’t in pain, and my son was too young to remember it.

My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge.

It doesn’t have to be a 10 on the pain scale to be a 10 on the “negatively affects quality of life” scale. If a doctor can give me back my quality of life by medicating my pain, even if my pain isn’t a 5 or higher, then why on earth would they choose to not medicate it? Why would one force my kids to make sacrifices in the richness of their life experiences just because one thinks my pain isn’t strong enough to warrant treating with anything more than over the counter meds? If OTC meds were working for me, I wouldn’t be in the doctor’s office saying I’m in pain and please help me do something about it. I’d be out there doing fun stuff with my kids and enjoying my life to the fullest. Yet, being young, and female, and diagnosed with fibromyalgia among other things, I find it next to impossible to get adequate pain control, and our lives are the poorer for it.

This is the root of chronic pain.  It changes our lives, every day, every minute, all the time.  It makes my son think twice before he asks me to get up to come see something he wants to show me.  It makes him ask how just going to watch him play baseball can wear me out so much. It makes my family schedule shopping trips around my pain schedule.  It makes my husband avoid intimacy because he’s concerned about my pain.  It makes me rethink and reroute everything I do. It adds stress to my thoughts and to my relationships, not to mention my finances.  It causes grief, anger, and transient depression.  It’s always there. The affect it has on my family is worse than the pain, so often I do things I probably shouldn’t because I want to be there for my family, and then of course, there’s the payment due, in the form of days or even weeks of a flare caused by doing too much.

It’s more than four years since I first noticed the symptoms; the fatigue and the brain fog was the worst at first, and I didn’t understand it.  Then the last two years it’s been the pain. And it’s still getting worse.  More symptoms, more diagnoses, more drugs and tests and consults with doctors who simply see me as an overweight middle aged pre-menopausal depressed* female with multiple complaints.  They turf me to the next guy in line and never think about how my disease affects my life.

One more link: a really helpful, thoughtful pain scale: The Mankowski Pain Scale.  It really is the most practical scale I’ve seen.  On her scale, I’m chronically at five or six, with flares to eight.

Current plan: Continue trial of gabapentin for at least a week.  Waiting for approval for the following consults: ENT, GI (colonoscopy), Physical Therapy, possibly Rheumatology.  See doc in two weeks.  Remind her of elevated cortisol and see if aldosterone remains elevated.

*Re: depressed: I always need to make it clear that they see me as depressed, but I am not.  I have moments of depression, as anyone with a chronic issue would, but other than my pain, I love my life, my family, my fiber obsession, music, all the things I do.  I see myself as a very lucky, blessed woman with so many good things in my life, and I appreciate all of then every minute of every day.    There is nothing wrong with a diagnosis of depression when it’s justified, but too often it’s the box they put us in when they can’t figure out (or deal with) what is wrong with us.

Adjusting

So, it’s been a couple of weeks since I posted.  Not a good sign.

For the first time, the pain has been significantly bad enough that I’ve been spending more time in bed.  Standing up, or even sitting for too long made my back feel like it was on fire.  That’s been hard to take. It means I’ve  been stuck in my room (the hottest room in the house), isolated from my family much of the time.  Isolation is not a good thing.

I’ve had to start thinking about my life differently.  I have to stop putting things on hold “until I feel better.”  I may not ever feel better, at least not overall.  I may, of course, and I can continue to hope and work on ways of feeling better; but I can’t make that my focus.  This is my life now.  I have good days and bad days.  I will have days when it gets to me and I’ll be blue, and I’ll have more days (I hope!) where I’ll focus on the good things in my life that are there every day.  I may have days when I can’t get out of bed, and I will have days when I’m almost “normal.” I need to focus on the present.  I’m learning to pace myself a bit better.  Learning to ask for help sometimes.  Still need to work on that.  I do wish I had a larger pool of people to ask; the Beloved needs a break once in a while from my neediness.

I no longer worry that this is all in my head.  Even I couldn’t invent this hell for myself.  I don’t know if it’s Fibromyalgia, or CFS, or thyroid, or some other damn thing.   I just know it’s real.  I celebrate the days I’m doing better, and just try to muddle through the bad days as best I can.

So far, I haven’t found anything that helps in any way.  I’ve tried so many dietary changes, and other than the initial “vegan” change, nothing has made a noticeable difference.  Worrying about it, and the cost of the diets, and the extra work involved have not paid off, so I’m giving it all up.  I’m going back to being “ovo-pescatarian” as that was the only thing that made an improvement in my life and agrees with my ethics.  Gluten free was simply too hard, too expensive to maintain, as was soy free.

I’m very much hoping my doctor will arrange for some physical therapy; I feel that would be the most helpful thing (other than maybe an in-house masseuse.)  She initially suggested it, so it’s a matter of whether Medicaid will pay for it or not.

Right now, my focus  is on feeling better about myself.  Making these thoughts concrete helps.  I’m doing some girly things to help me feel better about my appearance too; pics later if it turns out.  Setting a schedule, trying for some kind of flexible routine, learning what the limit is each day will help me manage my “adjusted” life.  Thinking more about how to manage my own fiber business for some sort of income.  Though even knitting is beyond me some days…

It’s strange, but in a way, surrendering to the “IS” actually makes me feel more in control; the constant struggle, denial, and fear took that control away.  Now that I’m dealing with how things really are, I’m back in the driver’s seat. How’s that for Zen?

Amazing what happens when I feel better.

So, I finally think I’m recovering from canning weeks ago.  Slept pretty well last night, woke up this morning and didn’t even think, just started doing things.  As of 2:30 pm, I have washed, dried and folded four loads of laundry, washed, dried and put away two sinks full of dishes, updated the Tour de Fleece group on Ravelry, and even worked on my room a bit.  This is quite a change from the last several weeks, during which time I was too sick, fatigued, and in pain to wash a dish, cook anything grander than scrambled eggs, or focus enough to read email.  I even had the energy to nag the kids about their chores. Oh, and I’m dehydrating onions too!  (Jola Gayle, you could have warned me about the fumes!)

The only problem with all this energy is that I want to use it while I have it, so I overdo and set myself up for another crash.  I feel so badly about all the times I can’t do things I want to make up for it.  Balance, again.  So hard to find.  Especially when there’s so much that needs doing.  It’s still very hot too; and I haven’t been responding well to heat; it magnifies every symptom I have.  I’m thinking about maybe investing in an air conditioner for my bedroom; while we can’t really afford it this room is the hottest one in the house.  I have two fans going and with the problems I’m having with my ear, I can’t hear a damn thing in my room.   I have to turn the volume up so high to hear the TV it’s ridiculous.

Anyway, after all this activity, I still feel ok; so after this respite, I’m going to head back into the fray (meaning work on the officially declared disaster area known as my room.)  More later, if I’m still up for it; and hopefully pictures of my first bobbin plied!

Bait and Switch

I feel like I’ve been taken.

Went to the Doc on Tuesday to follow up on our last appointment and get the results of my CT.  Negative, as expected.  Doc is convinced I have fibromyalgia, and wanted to start me on Cymbalta.   If you’re not familiar with it, Cymbalta is an antidepressant.  However, it is also prescribed specifically for fibromyalgia pain.  Having reached the end of my rope and willing to try almost anything, I dutifully read the literature she gave me (explaining the horrifying possible side effects) and filled the prescription.

I got home from the pharmacy, took out the bottle and was astounded to find that the bottle contained not Cymbalta, but Effexor.  Effexor is of course, another antidepressant.  So I called the doctor to find out what was going on; she said that Medicaid will not pay for first tier drugs until the cheaper drugs have been tried and failed.  Nice of someone to tell me.  She said they’re in the same class, same side effects, and that it was worth a try.  So, that night, I took it.

Since then, I’ve had a bunch of strange symptoms, some of which I’ve had before but not this bad, and some totally new ones. So I went to check the side effects.  I was terrified at what I found out.  Yes, the side effects are similar to Cymbalta, and yes, it is used (off label) for fibromyalgia sometimes.  That was the good news.  The bad?  Effexor has the worst in it’s class record for withdrawal symptoms.  Coming off this drug for some people seems to be as bad as heroin withdrawal.  Incapacitating dizziness, nausea,  what they call “brain shocks”, a painful sort of zapping feeling in your brain and down your neck and shoulders.  These symptoms (and more) can last from two weeks to several months.  The stories of the people who’ve experienced this are terrifying.

I feel like they’ve been trying to get me to take antidepressants so hard that now they’ve pulled a bait and switch.  I was willing to try the Cymbalta since it is supposed to help with fibromyalgia pain totally aside from it’s anti-depressant effects. But instead, I’m on a dangerous drug that probably will not help, and will make me feel horrendous when I stop it.

As far as I’m concerned, the side effects I’ve already experienced are enough to stop taking it.  Insomnia, dizziness, hiccups, nausea, headache.  Most of what I’ve read say that the withdrawal symptoms happen after six weeks of treatment, so hopefully with only four doses, I won’t have any problem.  I’m just so angry that I wasn’t told. 

In more pleasant news; Murphy got to ride in the Ojai Valley Little League parade float for the fourth of July.  He was proud.  As were we.  I tried to get a picture but of course, my phone chose that very moment to notify  me that the battery was low, so the float had moved before I could get close.

We went to the fireworks too, and that was fun; they do a good job every year. Ojai is such a great community, and the parade really illustrates its diversity; hippies, Mexicans, Indians, Hindus, kids, cars, tractors, dancers, bands of every sort.  It was HOT though.

My plum jelly has been a hit; I ended up with 24 jars. Still have a few more plums, but haven’t really had the strength to do much with them.  Tried dehydrating them to prunes with less success; they came out rock hard.  I think next time I’ll try halving them.

Witches Brew Roving

I’m spinning for the Tour de Fleece; it’s an annual event held during the Tour de France, where spinners all over the world commit to spinning every day the race runs, and often set specific goals.  I’m on a Ravelry team, the Lantern Rouge, which is a “I’m not sure I can spin every day but I’ll try” team.  I’ve spun at least a tiny bit every day but one, and on the fourth, watching a “Firefly” marathon, I managed to spin a full ounce!  Here’s the fiber I’m spinning; the colorway is “Witches Brew.”  I was aiming for  fingering or sport weight, but I think it’s ending up more worsted.  I really like it so far; today may be a plying day as my bobbin is almost full.Tour de Fleece spinning

If I finish the pound of this fiber I have before the end of the Tour, I have some gorgeous merino/tencel blend that I’ve been waiting to spin until I was “good enough.”  My last few bobbins have been  lovely and even, so I think I might be ready to give it a go.  I spin so slowly though that I might not finish the pound; that is a LOT of fiber!  I have no clue what I’ll make from the yarn, but I can’t wait to see how it looks plied.  I may do one bobbin navajo plied and one plied back on itself to see the difference in the colors; should be fun!

Off to clean my room; I’ve been feeling so badly that everything has been let slide.  Disaster area doesn’t begin to cover it.  Ever seen “Hoarders?”   Approaching that level…