I hate fibro

[rabid1st]

Let me tell you why!

Unlike many other conditions, Fibromyalgia is a deceptive disorder. Usually, you feel crappy, but it can leave you, within a few hours of waking, feeling relatively normal. You ache a bit, sure, but doesn't everyone? The problem is that on these relatively normal days, no matter how good your resolve, you tend to do too much. I think I can do something ordinary...which I obviously cannot do...and that leads to trouble. My body and mind are not quite in agreement about just where the line that they shouldn't be crossing is drawn.

A week ago, for example, I had an appointment that was 35 minutes away from my home. I took someone with me as I know from long experience that I would not be able to drive back from the appt, due to pain, stiffness and exhaustion. But, on the WAY to the appointment, I am usually okay. This time, however, my body decided that my doctor was correct and I could only drive 15 minutes. This left me about 20 minutes left to drive when it started cramping up on me. I should have used my mind at this point...and pulled over, but I ignored my body's increasingly painful protests and kept driving. The result was that I spent the next 36 hours or so moving like a woman twice my age, shuffling along as I walked, constantly switching positions to find scant comfort and meeping in faint protest every minute or two. Also, on the very next day, when asked by a doctor why I was moving so slowly...I helpfully answered, "I hurt" instead of fully explaining. Full explanations were a little beyond me at the time, due to my mind now agreeing with my body that I had fibromyalgia.

But my mind was still getting me in trouble, as it decided I could make a music video from my sick bed, reasoning that my left arm and hand were not totally crippled. This further attempt to pretend that I was not chronically ill has led to me being pretty much useless for the last four days...with no end in sight. I tried to visit my sister with painful results. So painful and exhausting in fact that we had to cancel our Memorial Day outing to the park. So, here I sit...in need of a shower but not feeling up to lathering myself. I should at least turn on a light...but I would have to get up for that.

Rae

Comments

[wickedgillie.livejournal.com]

I've been dealing with fibromyalgia for almost 20 years now. Trust me, I know where you're coming from because I have many many days where the fibro wins. It's very mentally/physically taxing to beat the fibro all day every day. But individual battles can be won. For example, this morning I could barely tie my shoes but I still managed to run a 5k. I am paying for it now with extreme pain that makes me want to cry like a toddler whose ice cream cone went splat, but I am savouring my temporary victory over the big F all the same. I probably won't be functional tomorrow or Wednesday, but for now at least, I don't care.

Hang in there, my darling. And don't give up the fight. It's not easy winning battles against the fibro particularly since so much of it is forcing your mental will on your uncooperative body, but it can be done.

[wickedgillie.livejournal.com]

One more thing--when I get to the level of pain/non-functionality you're at, it's all hot baths, rice socks, and as much gentle yoga as I can talk myself into. I know it's so bloody hard to move when it gets that bad, but the movement/activity WILL help. Or at least they should. Don't let this keep you completely grounded.

[rabid1st.livejournal.com]

I am also thinking about that shower...a hot one would do me good...and maybe I don't need to lather so much as stand there and get pummeled by the shower massage, right?

[wickedgillie.livejournal.com]

Ignore the lather and just let the heat pummel you as needed. You'll feel better for having done it.

[rabid1st.livejournal.com]

You ran 5K? Looks at you with the same wonder other people offer to the pyramids. Jeepers!

I would be happy if I could walk a couple of blocks to the library at this point. Yes, I do know that you have to force yourself to do things that are painful...in order to keep mobile.

I, for example, did get up and turn on the light and also...am considering making a sandwich. But 5k runs...amazing! Tell me more true tales like this.

Rae

[wickedgillie.livejournal.com]

I also spent 8 hours on Saturday and another 4 hours on Sunday building a dry-stone wall in my back garden. My desire for the wall was greater than my fear of the pain, so I was able to push myself. It was much harder to push myself on Sunday and each row took longer and longer with more breaks between rows, but I'll be damned if I'm going to let some stupid auto-immune disease keep me from building a wall in my garden. That said, I don't know that I'd be able to push myself as hard if it was something I didn't want as much, or if I had to do it in cold damp weather. I can't live every day like this, but I push myself to have as many days like this as I can. It takes a lot of mental willpower, so on my bad days, I get very brain foggy and can't put sentences together sometime.

So--I was miserable and sore and couldn't bend, could barely tie my shoes, but it was race day today (my first one!) and I had made this commitment to a ton of people. I was determined to do this race, even if I had to crawl the bulk of the course. It was amazing that the adrenaline kicked in, the pain actually disappeared, and I found my running zone despite it being in the 80's, hellaciously humid, and a VERY hilly course. I finished 16th in my age group and 291st overall in a group of 700ish! I even felt good when I got home. Of course, the adrenaline ran out and the pain hit me like a brick wall about an hour later, and I sat like a lump for most of my mother's cook-out, but I am SO glad I did this today. It was so unbelievably hard mentally and physically, but I didn't let the course or the heat or my asthma or the frakkin' fibromyalgia beat me today.

It *can* be done.

[rabid1st.livejournal.com]

That is rather how I used to feel about working. I loved the library work so much that I didn't care how much it hurt me to do it...I just kept trying. But eventually, my loved ones and my doctors and other doctors prevailed on me to stop before I killed myself. Of course, I didn't really stop...I was stopped by others. But after I sat for a few months and stared at the grass growing, I began to see that life shouldn't be one long agonzing crawl toward the grave.

I hope to one day reach the point that you are at where I can use my good days to make life sweeter. I do think that alternative medicine and simply honoring the limitations I have will help me get to a more rewarding life. But currently, I am happy when I can drive 35 minutes in a week or make my own sandwiches. Of course, if I could also get the sleep apnea under some control...that might help. Still, now that I'm not working, I do have a little more clarity and a little less regular pain in my life. So that's something positive.

[wickedgillie.livejournal.com]

I was working at Waldenbooks as an assistant manager when I taken down by the worst fibromyalgia flare-up of my life, pre-diagnosis. Shelving books was the catalyst. At that point, I was so bad, I couldn't stir soup or cook an egg or even brush my own hair. The pain was unbearable. I had completely lost my range of motion. Also, couldn't drive since I had a stick-shift at the time. That's what put me on a search for the reason why, and a ton of doctors and battery of tests until I got my diagnosis. It was also when I ended up in physical therapy for a year. I resolved to never let things get that bad ever again, and thus far, it hasn't. I lost the job, but I got my life back. It's daily work. I do not let a day pass without 10-15 minutes of yoga. And I have learned when to push and when to not. (Sometimes I push it anyhow, like today.)

You will get there, Rae. The lack of sleep isn't helping, so you're getting a major build up of lactic acid in your muscles that your body can't rid itself of naturally since you're not hitting the correct sleep stage. If you aren't in a place to get the exercise yet, maybe go the massage route? I was lucky enough to be a case study for a masseuse in training so I got free massages 3x a week for 6 months. Maybe you have a massage therapy school in your area that would like to have a fibromyalgia guinea pig, too?

[rabid1st.livejournal.com]

Oh, now there is a thought. We do have a massage school one town over...and I am a unique case, for sure. I wonder if we have classes closer though...that one would be a bit of a drive for me. Still...good idea.

My woes started much as yours did...during a hurricane we were the only library open. I had already been suffering with some mysterious aches and pains but the book handling sent me over the edge into what I now recognize as a horrible flare. This was in 2004 and set me on the same journey you took...unfortunately...I kept trying to work...so I could never recover for long. Finally, in 2007 I was moved to very light duty...pretty much a receptionist...answer calls and directing people. But even on light duty I couldn't keep a schedule and I was in a painful fog most of the day. So, first I cut back my hours...then I got into a battle to even keep the job, which I lost because an independent doctor said there was no way I could work 40 hours no matter what we sort of accommodations I had. And since I was failing to work even 20 hours...I gave up on the whole idea.

But, as I said, I kept telling myself that I would get better with a little rest...which turns out not to be true so far. However, yeah...I suppose I can now see that I might get to the point where I can have more functional days. So many things seem beyond me at this point though...people talk about art festivals they go to or 5k runs or walls built or banana bread baking...and I think...WOW!

So, everyday yoga you say...I might try that when I get to be mobile again. The only thing I have definitely learned, and it is so very helpful...is that I'm not actually going to stay immobile forever. I used to be so very afraid that the pain would never let up and I would just keep going downhill. So, not working has showed me that I don't have to keep going downhill at least...I do have days when I almost feel normal now. I didn't really have any days like that for the last two years I worked.

Rae

[wickedgillie.livejournal.com]

I did the PT and tai chi (doctor-ordered tai chi, no less!) before the yoga, but I suspect I could have gone straight to yoga had this happened to me in the oughts instead of the nineties. There are a ton of yoga options out there now that simply weren't there before. PT could be a good option for you, too, if you've lost your range of motion. Are you dealing with bursitis in your shoulders at all from your shelving days? I had to get lidicaine shots for a few years, but now I don't need them any more. I think my last one was for a flare up when I was pregnant with Abbey in 2003 since my ligaments got loose as a normal result of the pregnancy.

Definitely find a way to get yourself moving again, even a little. It will help a bit with the fibro-fog, too. I am sure your apnea is making things worse since lack of sleep can make anyone brain-foggy, then the fibro kicks it up a notch. It'll take time to get there. And you're going to need a lot of willpower on the days when it just hurts like hell and you'd rather crawl back into a nice numb ball. But you can do this. Don't let fibromyalgia keep you from lving the kind of life you want to live. Mind over matter. Will yourself back to the land of the living again and you will have more of those days when you almost feel normal. You will even bake banana bread again. :)

[rabid1st.livejournal.com]

My doctor actually recommended Omega 3 for inflammation. She's quite forward thinking. And I did have physical therapy to start...but it made me much worse. They thought that I had tendonitis in my shoulders and were treating me with stretching exercises...but I do think there was a build up of lactic acid...because I kept getting more and more exhausted and the exercises got harder and harder until I couldn't do them anymore.

Currently, I take mineral supplements, amino acids and malic acid and magnesium to counter the build up of some of the waste in my body. They do help it seems. Medication...well...I take it when I have to take it...but it is hard to simply be curled up in a medicated ball and spend your life like that. I did see this happen to my mom and my sister-in-law, too. Though the sister in law does not have fibro...my mom might have...but was never diagnosed...she just sort of gave up on everything. We thought she had depression...but now I wonder.

[wickedgillie.livejournal.com]

Not sure if you just had a crap physical therapist; you shouldn't have been pushed to the point where you were doing yourself more harm than good. Any chance you could see someone else? Also, could you look into the bursitis issue? From years of shelving (and I am sure enough of it was above shoulder level)you could well have bursae that are still prone to inflamation right at those fibromyalgia tender points that stradle that joint. If that's the case, try at least one round of lidicaine shots. It's a crystaline cortico-steroid that worked over a three-month period. In the 20 years I've been dealing with this, this was the ONLY medical intervention tried that improved my quality of life.

And if lactic acid is your issue rather than tendonitis (and I'm thinking with the apnea also being in play it would bloody well have to be) then my educated guess is that massage therapy would be your next most logical step. There's a technique called "skin rolling" which is fantastic for breaking up adhesions of lactic acid, particularly helpful around your neck and shoulders where those tender spots are. It was almost miraculous in how much it helped, almost more than some of the deep muscle massage. If you can't get to them, maybe they could actually come to you? You do sound like an ideal case study...

I wouldn't be surprised if your mum also had fibro. My mum doesn't have it, but I did inherit Hashimoto's Auto-Immune Thyroid syndrom from her, and it's been suggested that fibro & thyroid disease often go hand-in-hand. It can take you completely out of the game, and yeah, it goes hand-in-hand with depression. As active as I try to be, I'll admit there are still plenty of days that curling up into a medicated ball sounds awfully appealing.

[thisficklemob.livejournal.com]

Oh, Rae, I meant to post this on fandom_is_sick, but it might interest you:

www.nytimes.com/2010/05/25/health/25real.html?src=me&ref=general

Quick version: Throat exercises seem to help some people with sleep apnea.

I got logged out when my browser crashed, and my Captcha was launch wahhabi. That seems a bit ominous.

[princessblue791.livejournal.com]

Hugs you*

I'm so sorry,Rae.

[credilya.livejournal.com]

Oh my dear, I'm so very sorry. I hate that feeling of looking back on reasonably long periods of time and knowing they were a completely wash because of illness.

It may be out of left field but the orphan drug I just started taking is also used for fibromyalgia. Have you tried Xyrem?

[rabid1st.livejournal.com]

Hmm...no I have not! I will look into it. I did recently hear of a new drug I would like to try...low dose...uhm...rats, I am foggy and can't remember. But it is a drug used to treat opiate addiction...only in low doses it appears to help Fibro. I am a wash out on Lyrica and the NSAIDS, I believe. Either I'm sensitive to the meds or they don't work at all. SHEESH!

Rae

[wickedgillie.livejournal.com]

They tried NSAIDS with me back when I was first diagnosed. All it did was give me a lovely case of chemical hepatitis and jaundice. Also have zero interest in Lyrica. The potential side-affects hardly seem worth it. Instead, a year of physical therapy, yoga, tai chi, and hydrotherapy have been what's keeping me functional 8 days out of 10, pretty much med-free, since 1994.

[rabid1st.livejournal.com]

I, too, have become very discouraged about the medical community response to my illness. NSAIDS caused me a terrible case of GERD asthma...but otherwise did nothing at all for my pain. In addition, they keep taking me off of them for assorted side effects. And, like you, I have some legitimate worries about my liver and kidney functions at this point. I have tried just about every pain reliever known to man and a few of the scarier medications. And I do agree with you that alternative treatments are often just as effective.

Exercise is a real stumbling block for me because I cannot keep up a regular program. My exhaustion is cummulative. I have yoga DVDs but I have only make sporadic attempts at it. Even though I know that regular exercise makes the days easier overall. As you know...the exercise itself doesn't appear to GET easier though. I still remember when exercise used to get easier...but these last few years, every time I start a program, I find myself getting worse and worse as I go along until, eventually, I simply can't keep going.

Then, of course, I lapse into a few months of NOT trying. And we start again. I had hoped when I stopped working that I would have a little more energy...but it's been a year now and I'm only a little bit better. I am a bit better though...so perhaps I should try Yoga again. I tried physical therapy early on and it had the same cummulative pain and exhaustion effect on me. But if I ever do start collecting disability...I am going to start massage therapy and perhaps some water walking at the local physical therapy place. I do think I will get exhausted though...as that has been my experience. Perhaps there is some way to modify a program to something ridiculously easy, however.

I would love to have an 8 out of 10 day functionality. Currently I have about 2 out of 7 and when I say "functional" I mean...I think I can do things which it turns out I shouldn't be doing...I guess. :grin:

[wickedgillie.livejournal.com]

I think the trick for you may be to find that one exercise regimen/time of day where it's fail proof and you do it because your body needs it to be done, so it's easier to put in the work. A full yoga dvd may well be too much. I'm not sure I could get through a full yoga dvd. 10 minutes of exercise a day might be just enough to get you more mobile in general without overdoing it.

In my case, I started doing yoga in general right after Abbey was born, and I would practice just a short bit of yoga between the time she'd fall asleep nursing and me waiting for her to be asleep long enough to move her into her crib without disturbing her. I am now just over 6 years of nightly yoga, only now it's between when my son falls asleep in my bed and me carrying him to his room. I probably need this routine more than he does. I will need to find a new routine once he's finally ready to do the full bedtime ritual in his room without me needing to carry him anywhere. Ten minutes a day may not seem like much, but it's 70 minutes of exercise a week that will completely change your quality of life for the better.

Only being functional two days a week is a rough place to be. But it's better than being completely non-functional. And I believe you have the drive to find a way to make it better still. Baby steps still get you there eventually. Don't focus on cummulative progress or non-fibrocentric expectations. Don't push if it's the kind of exhaustion that isn't productive. You're going to find a new balance and a new normal.

And don't worry about what you should or shouldn't be doing. Be a rebel!

[mrs_roy.livejournal.com]

I hate Fibro too! I know what it's like to hurt, and I really, really hate fibro because it makes you hurt too! I wonder if we could shake it out of you? Turn you upside down like a salt shaker.

I'm thinking about you, it doesn't sound like much, but breath through it, I promise you'll be alright. Don't think about it, because the more you do, the worse it is. Trust me, I know these things.

Love you more *Hugs*(Gentle)

[rabid1st.livejournal.com]

ACK! No shaking of the Rabid!

Shaking, I am certain, would hurt.

But gentle hugs are always nice...especially virtual ones where I am sure not to be jarred.

Thank you for your kind thoughts...I am just whining because this has gone on for a bit and I am sick of being completely out of it like this. I know I don't regularly do much...but I hate having my little trips to the library and park curtailed. Other people, as I've said, surely have it much worse...but sleep apnea and fibro are very trying together...just because they are so relentless they never let you forget them.

Rae

[mrs_roy.livejournal.com]

Whine away as far as I'm concerned, you deserve it. Listening is the least I can do!

No shaking .. ok, well, we'll think of something else ;) Perhaps we can just string you up to the clothes line for a bit. That's probably an even better idea! Hee.

[susanb03.livejournal.com]

I'm so sorry! Chronic illness is not easy to deal with.

[rabid1st.livejournal.com]

Thank you. And yes, as you know too well, it sucks.

Rae
who would really just like to work again...but can't imagine where I would find a job that wouldn't mind me spending most of my day in bed.

[thisficklemob.livejournal.com]

{{{{hugs}}}}}

Yeah.

I once told my dad that having CFS was like bouncing on a trampoline with a very low ceiling.

[rabid1st.livejournal.com]

Yes, oww...owww...oww!

And a little bit of..."Why am I even bothering to bounce?"

Thanks for the hugs, Pet! They make me feel warm and happy in my aching body.

[thisficklemob.livejournal.com]

I meant more with the trying to do stuff... you can do a little, and you try, but build up any momentum or try to do what should be natural, and... whack.

And a little bit of..."Why am I even bothering to bounce?"

Yeah. I sometimes stop bouncing, or bounce very little, like not even leaving the trampoline. (This all being figurative, of course. I don't have the energy for an actual trampoline.)

But, today was a pretty good day. I went to an arts festival, got a nice prezzie for my stepmom and a lovely wooden ladle for me, then ate dinner someone else cooked. Tonight I hope to Not stay up all night, and with how tired I am, that should be possible.

P.S.

[thisficklemob.livejournal.com]

You may be beyond its help, but I much like Kiss My Face's Active Athletic bath gel. I am neither active nor athletic, but it's good for soreness, especially in the bath. I think it's the arnica in it?

And, I totally get being too tired to shower. That one sucks because showers can make at least your skin feel better.

Re: P.S.

[rabid1st.livejournal.com]

I have used that bath gel. I should get some more. In addition to the lofty goals of turning on the light and making a sandwich...I had toyed with the idea of a trip to the store to buy some balm. However, that idea didn't come to anything.

You know what else is good...a clay bath. In fact, I think that I will risk moving again to soak my feet in some clay water. I do not believe I could actually manage a bath...getting in and out of the tub is always painful...on my own it might be dangerous.

Re: P.S.

[thisficklemob.livejournal.com]

I should say not!

What's a clay bath? *googles* Ah, I see. I'd never even heard of that. And it draws out heavy metals? Iiiiinteresting.

I did get a scrub/mud body treatment once after I got a spa gift certificate. Like they put these salts on, and then applied mud over the top with a brush. And then a massage. I don't know which part did it, but I felt really good after.

Thanks for the tip!

[rabid1st.livejournal.com]

The clay does great things for my aching hands. When I can't use them...Jan will draw me a basin of hot water and put a few tablespoons of clay in it. I don't quite know how it works...but it does appear to suck out some of the pain. You do need to be careful to buy from a reputable company to avoid any contamination from what people tell me. Jan bought ours...so I can't offer you any advice just now...without moving. Later perhaps. Feet are soaking.

[thisficklemob.livejournal.com]

Good. You relax. <3

[np-complete.livejournal.com]

*hugs*

[keswindhover.livejournal.com]

*hugs Rae*

I hope it's a bit better today, at least. Take good care of yourself.

[celtae.livejournal.com]

I have fibro, too.

I feel your pain. Literally.

[linwick.livejournal.com]

So sorry to hear of your difficulties. Excuse me if you've discussed solutions to your apnea, I don't recall what you've tried, but I have a bad case of apnea myself. I did a sleep lab night after telling my doctor that I woke up every morning almost gasping for breath and having frustration dreams. I also had lots of aches and pains, to the point where I did some internet research on fibro (I didn't have it.) My doctor said not enough sleep or bad sleep can cause muscle pain.

Anyway, the sleep lab results were that I was almost stopping breathing on average 18 times an hour. The solution was a C-PAP machine. This really works for me. I use it every night and feel much better. It has also completely eliminated my loud snoring, which my long suffering husband really appreciates.

Probably more information than you want or need, but I've become an enthusiastic proponent for C-PAP. I hope you can find a way to feel better.

[rabid1st.livejournal.com]

I have had my sleep studies and I have tried both C-Pap and BiPap. I wish they were helpful for me. We don't exactly know why I have trouble with the machine/masks. We have tried about 16 different types of masks and 3 machines. I have a lot of trouble even putting the mask on anymore. In the beginning I would try it and then I would wake up after about 20 minutes choking and gasping for breath. We couldn't get me through the night for another sleep study for 4 years...finally we did find a full face mask that did help, but only when there was a nurse to physically restrain me. Also, the nurse noted that I coughed something horrid while wearing the mask.

The cough remains unexplained. I am allergic to silicon in my eyeglasses and there is an abundance of silicon in the masks...so it could be as simple as my allergies...or it could be claustrophobia. I do have that for MRI's and certainly I've gotten quite paranoid about the machine.

But yes, we do know that lack of sleep also causes muscle pain. For about 3 years I was going on my sleep doctor's assertion that I felt crappy because I couldn't sleep. I stop breathing about 102 times in 6 hours. And my oxygen saturation is really horrid. I so wish I could just put the mask on and fall asleep. At this point, sleeping peaceful and breathing easily throughout the night sounds heavenly.

Thanks for the info though...I do appreciate hearing that some people are doing well. I'm considering trying the nasal pillows again. Though my nose swelled something awful the last time I tried them...I did manage to fall asleep for a bit with them.

Rae

[linwick.livejournal.com]

I'm so sorry that it didn't work for you. Allergies can really screw things up. I use the kind of head gear that just has straps around the top of my head, with a tube arcing down from my forehead that ends in two rubbery things that fit in my nostrils. I couldn't do any kind of mask pressing on my face, because I have a deviated septum.

Anyway, I'm even more grateful that it works after hearing of your difficulties. They've come a long way in the treatment of apnea in the past 10-20 years, maybe they'll come up with new materials or technologies in the future.

Be as well as you can.

Linda

[dualbunny.livejournal.com]

::hugs you very much::