Posts Tagged ‘fibromyalgia’

fibro fog

March 15, 2010

One of the most annoying symptoms of fibromyalgia has been the “fibro fog” or “brain fog” that (I feel) is getting worse as time passes. Common symptoms of fibro fog include:

* short term memory loss
* difficulty remembering where you left something
* difficulty remembering plans
* difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
* difficulty finding the “right” word (written or spoken)
* trouble remembering simple numbers (addresses, home phone number, PINs, etc)
* difficulty following directions, instructions, and maps
* transposing or reversing letters and numbers
* trouble concentrating and focusing (particularly when it comes to multitasking)
* trouble retaining new information
* trouble recalling old information

I’m frustrated with this more than I’m frustrated by the physical symptoms, because I used to be proud of my ability to articulate and communicate, as well as my ability to multitask and utilize forethought. The written word is easier to manage, since I can spend as much time as I need to on a post, and go back to edit; however, conversations take on a whole new meaning, since I mix up words and can’t get words out, sometimes.

I can’t even imagine how annoying it must be to have a conversation with me where I’m asking you to “hand me that thing over there next to the other thing so I can do this thing with it.” I remember being irritated with my mom in the past when she’d say similar things. I can’t help but wonder if she had fibro fog while I was growing up (she often talks about aches and pains and poor sleep), but I always blamed it on her night shift work and poor communication skills. My poor mum.

Fibro fog has affected several of my favorite activities, from cooking and baking (because I lack the forethought to adapt recipes to make them my own, or create a new dish, and I often leave out or make mistakes with ingredients and steps when I try to follow a recipe to the letter), to writing (I get distracted quickly, after 200 words or so, and lose my train of thought when I try to leave myself notes and come back to the project), to crafts (I keep starting projects and forgetting them when I start something new: so far it’s been sewing and knitting I’m saddest about), to visiting new areas and trying new places (I can’t keep the places straight, and when I try to maintain a running list of “things I’d like to do,” I lose the list, even when it’s electronic). I really love playing Words With Friends on my iPhone (it’s like Scrabble), but I’m really not any good at high point words, or complex words. I figure it’s good brain exercise to play at all, and it’s fun (even when I’m getting my butt kicked), so I’ll just pretend like my brain isn’t turning to swiss cheese).

Fibro fog also affects important activities of daily living, like when it comes to remembering medication (I’ve forgotten I’ve already taken my Advair and take a second dose sometimes) and vitamins (time passes quickly, so I lose track of it), or I forget I’ve already put deodorant on and put it on a second (or third) time, or brush my teeth a second time.

Fibro fog is also why I haven’t posted much lately. I keep forgetting. Even when I have a great post idea, I’ll send myself an email or make a sticky note as a reminder, and then it gets buried under other emails or sticky notes, and then eventually I get overwhelmed and trash all the unanswered emails or sticky notes, and trash them all and start fresh. Rinse, lather, repeat.

The newest Really Annoying Habit I’ve got is that I get upset because I can’t find something that I *know* is nearby, I look all over a small area for it (like the coffee table or in the refrigerator) over and over again, and finally ask someone, exasperated, where the lost item is, only to find out it’s literally directly in front of me, next to or on top of something I distinctly remember seeing and acknowledging, but I swear that remote control was NOT THERE when I was looking furiously for it a second ago. My husband (and friend living with us) are extraordinarily patient, since they haven’t said a word about this Really Annoying Habit. Aren’t they wonderful? I’m so lucky. :)


Still Anemic

October 27, 2009

Venofer, intravenous iron.

I had my sixth iron infusion yesterday. That brings the total of intravenous iron up to 1100 mg, in the form of iron sucrose. I’ve been eating lots of leafy greens, black beans, and walnuts (along with anything else that boasts a high iron content, like molasses). And my iron levels still haven’t come up. Well, to be fair, they’ve increased a bit, but not enough to excuse me from future iron infusions. My hematologist would like me to try four more treatments, but because my veins are shot to hell right now, we’re going to take a month off. I’ll go back on December 7 for an iron re-check and a visit with the doctor, and then we’ll come up with the next phase of the plan.

In the meantime, I have a new supplement to try (Salus Floravit) that’s vegan and packed full of iron, and hopefully won’t bother my stomach, either.

On Sunday, my brothers-in-law invited my husband and me sailing. I’d never been sailing before, so this was a real treat. We went out into San Francisco bay, under the Golden Gate Bridge, and into the ocean. It was wonderful. Perfect weather, great company, and I LOVE the ocean. I can’t get over how amazing it was. I have some great pictures and great memories!

View of the Golden Gate Bridge from below in a sailboat.

Of course, no good day goes unpunished, and I spent yesterday and today recovering. Yesterday was particularly painful and exhausting, and while today has improved, I’m still not up to speed, and my stomach (fibro-related IBS) is very unhappy. But I have amazing memories so it was well worth it!

Speaking of stomachs, I also saw my general doctor recently because I’ve been having new and different back pain, and lots of nausea and stomach pain. My back was xrayed (mild scoliosis and disc narrowing, so not a real explanation for my pain), and I had a Celiac test done (no results yet). She also suggested taking Prilosec OTC for 2 weeks straight (I’d only been taking it when my GERD was flaring), probiotics, and small frequent meals. The probiotics seem to be helping a bit, although I still get nauseous every time I eat. I so rarely throw up that I can ignore the nausea. It’s probably just fibro and motility problems. (That’s my guess. My doctor is great and is smart about not dismissing everything as fibro until other explanations are ruled out.)

So it’s a low-key week for me. I certainly miss the days of being Super Productive Girl, but on the other hand, a nap on the couch sure does sound like it could cure the world’s ills….

Fibromyalgia Awareness Day

May 12, 2009

This is my first Fibro Day as a person with fibromyalgia. I’m still coming to terms with it myself, so I don’t know what I have to contribute to the community (either the fibro community or the healthy community).

I admit in the past, I had written fibromyalgia off as some kind of fake illness. I had met a man once who claimed to have it, but he wasn’t a very trustworthy person, so I wondered about his illness. It wasn’t for a couple of years that I worked in “Big Pharma” and heard about a new drug for fibromyalgia. The drug ended up being Lyrica, and there was a lot of skepticism out there about its application. It seemed like fibromyalgia had been previously a vague illness, a diagnosis of exclusion, but it now had some specific diagnostic criteria that coincidentally matched up with some of Lyrica’s indications. It seemed like a convenient money-making coincidence.

I had never known anyone with fibromyalgia at the time. I met a wonderful friend who was in the process of obtaining a diagnosis, and really sympathized with her fight. She was tired and in pain, and all the tests came out negative. She finally saw a rheumatologist who diagnosed her with fibromyalgia. I started reading up on it in greater detail to understand more about what she was going through. I read The Spoon Theory and tried to understand. At that time I was recovering from mono and knew all too well what it was like to be exhausted, but I had not talked to anyone about it. I just knew I had to keep going to work, keep earning a paycheck, and couldn’t complain about it. Since I didn’t have a “visible” problem, I didn’t think I had the right to talk about it.

Fast forward a couple years, and things started to get worse. It was hard to ignore when my body ached even more, and when I’d conk out after work or on my lunch break. When I realised I had the classic tender points, I was kind of in shock. I was a person with fibromyalgia.

Even worse: I had a disease I once believed was imaginary.

I’ve done so much reading on the subject. I don’t advocate as much as I should for myself. I’ve learned a lot, and every day I learn more about what helps and hurts me. I feel like I’ve come a long way, but have so much longer to go. I feel like I still judge myself and feel guilty about my abilities and disabilities, and I’m not clear about my needs. I try so hard to be helpful and cognizant of others’ needs, I just need to do the same for myself!

I think I will make a plan for the next year: I will educate others about fibromyalgia when it’s appropriate, I will advocate for myself, and I will report back on Fibromyalgia Awareness Day 2010 about how things have changed. I challenge you to do the same. :)

For more info:
Wikipedia on Fibromyalgia
Mayo Clinic on Fibromyalgia
WebMD on Fibromyalgia
National Institutes of Health/MedlinePlus on Fibromyalgia
National Fibromyalgia Association

things are improving

March 28, 2009

I haven’t posted in awhile because things aren’t too bad! An update is in order, though.

I’ve been on vicodin for my back for about a month. I’ve been able to walk around with less problems, and I can even lift some of the totes and boxes we’ve been packing. I’ve got to be careful, but it’s nice to feel a little more useful around the house. It’s amazing exactly how much pain I’ve been in. I still have weakness and numbness in my legs, which is annoying, but the decreased pain makes it easier to ignore the numbness.

With my back pain lessened, I now know the full extent of my fibro pain. Which is ridiculously annoying. The pain is kind of maddening, really… it’s like needing to stretch but being unable to stretch out the knots no matter how much I bend and contort. It’s also interesting that the narcotics aren’t touching the fibro pain. What an odd pain it is, that it can’t be touched by strong pain killers!

At night I’m taking Flexeril, and that seems to relax my shoulders (the most annoying part of fibro for me, I’ve discovered!) to make it easier to sleep. I know it doesn’t work for everyone, but if you haven’t tried it, and it’s hard to sleep because of the fibro pain and tightness, I highly recommend giving it a shot. Some nights it doesn’t help, but more often than not, it does. I can feel the stiffness melting away slightly, and that’s about the point when I fall asleep.

I wake up with tons of back pain and I can hardly stagger down the stairs to the couch, where I pop my first vicodin of the day and check my email and putter around online while it kicks in. It takes about an hour before I can move for real. I sometimes need a second vicodin 8 hours later, depending on what we’re doing. If things are *really* bad, I’ll take a third before bed, but I’ve only had to do that a couple times.

I had a followup with my doctor a couple days ago to talk about the progress. He was glad to hear it! He refilled my scripts and we talked a bit more about how I’m feeling. He wasn’t surprised to hear I’m still tired and still having fibro pain, but was glad I’m walking around more and less glued to the couch.

Even though things are improving, we’ve still decided that going back to work is not a viable option for me. I’ll talk more about disability next time.

Fibromyalgia as a legitimate disorder

March 11, 2009

Last week, my husband and I were going a bit stir-crazy being cooped up in the house so much. We’ve been busy packing, and my husband has been busy with schoolwork, but it was getting us down. We decided to pack up and take a day trip to Chicago (well, a quick overnight trip). I figured it’d be a great way of testing out my new pain control.

And I did do pretty well, I have to admit. I walked and walked and walked, with minimal complaining. However, my fibro flared up and made my shoulders ache. My skin hurt all over. I spent 3 days after we got home just lounging on the couch and dealing with nearly unbearable pain in my shoulders and neck. Okay, fibro, I get it. You win this round. But I still get credit for covering so much ground on foot in Chicago.

A news story was published today saying, “A Massachusetts anesthesiologist has been accused of fabricating results in nearly two dozen published studies that claimed to show after-surgery benefits from painkillers including Vioxx and Celebrex.” Other drugs included Lyrica and Bextra. (source) The plot thickens when we find out that this doctor was funded by Pfizer for 5 years to study the effects of their own drugs for pain control. It sure does seem shady. I would like to believe that Big Pharma has only one noble goal: to cure people. But I’m bitter and jaded (and an ex-pharmaceutical employee), and I know that every pharmaceutical company has the same goal, and it’s not about curing people. It’s about making money. Obviously they’re making money by improving quality of life for some people who can afford it, but the bottom line is the almighty dollar.

Fibromyalgia is a vague disorder (more of a syndrome), diagnosed by excluding everything else. Those of us who have fibromyalgia have a lot of similar symptoms (including symptoms that are not in the diagnostic criteria but probably should be), but I admit we’re an exhausting bunch. Our symptoms change from day to day, sometimes several times a day. We may not know exactly when our symptoms started, because they’re so vague and creep into our lives slowly over time. We may not be able to articulate what hurts and how it hurts because the pain is so complex, deep and throbbing in the muscles yet the softest touch on our skin feels like we’re being stabbed with a serrated knife. And, let’s not forget, those of us who are fat are usually told our problems are due to our weight, because that’s much easier than working towards a diagnosis and treatment plan for a bunch of annoyingly ambiguous symptoms.

This makes it very difficult for me to trust the pharmaceutical companies. I’m not sure they have our best interests in mind. Fibromyalgia has had diagnostic criteria since 1990, but it’s been fairly vague (with the exception of the Tender Point Test, which requires doctors to be very precise and consistent when conducting). Then along comes Lyrica, with a vague list of indications. Lyrica, meet fibromyalgia, “a textbook definition of an unmet medical need,” according to Pfizer (source). Unmet medical need, or unmet need for profit? Lyrica pretty much cleared the billion dollar mark in its first year (source), as well as opened the door for a whole new chapter in Pfizer’s portfolio: fibromyalgia drugs. Since then, Lilly’s Cymbalta has also been approved for the treatment of fibro, and there are more drugs coming down the pipeline.

It’s almost like fibromyalgia was tailored to fit the drug, not the other way around. The fact is, fibromyalgia is a real disorder, with real symptoms, and real people suffering from it. The symptoms may be vague, but they’re there, and they’re predictable. Not every doctor has bought into the reality of fibromyalgia as a disorder, but they also used to treat homosexuality as a disease and practiced bloodletting to treat fevers, so I have hope they’re going to come around eventually.

Unfortunately, I think fibromyalgia is just a victim in the crossfire between the need for more government-funded research and the profit-driven privately-funded research conducted by pharmaceutical companies. If the government funded more research in this area, they could strive to fund less biased researchers, such as the ones at universities. Pharmaceutical companies could spend more time manufacturing less expensive drugs with more of academia conducting research instead of Big Pharma doing the work. I want to see more research being done with chronic illness, and I don’t want to hear about doctors funded by Big Pharma grants sitting in a room together creating some diagnostic criteria to fit the indications for a new blockbuster drug. I know my solution isn’t perfect, and I’m not claiming this is the only right way to solve this problem, but I’m getting sick and tired of reading about how fibromyalgia is a “murky” disorder, and I’m even more sick of hearing that it’s all in my head. (One more link on the subject, here.)

And my disclaimer: I’m not arguing that Lyrica and Cymbalta are not effective for people. I know these drugs work and have turned lives around for many people suffering with fibromyalgia. I want these drugs to stay on the market, and I want people to continue using them responsibly, if the drugs are helping them. But what I don’t want is another conveniently vague disease plucked off the shelf to extend the patent life of a drug. We should be researching fibromyalgia for the sake of understanding it better, not for the sake of selling drugs.

wow, a happy post!

March 1, 2009

I finally went to my GP three days ago to touch base with him. He made a note at my request that I had to leave my part-time job. We talked briefly about my frustration that I’m always in pain and always tired and I felt useless. He told my husband to “kick her butt” and then said “but don’t hit the tender points.” Har har.

He agreed with me that Cymbalta and Lyrica weren’t the best fit for me, since I was concerned about negative effects of a psychotropic drug, as well as taking a medication that is likely to cause weight (Lyrica). The doctor agreed with me and said that both drugs are likely to cause weight gain, and agreed with what I said about taking an anti-depressant. We talked about how tramadol does well for my fibro pain, but doesn’t touch my back pain.

My GP was hesitant about going down the “slippery slope” of narcotic use, and I agreed with him but asked if we could try it. I was hopeful if my back (and hips and legs) would stop hurting, that I could maybe deal with the fibro pain better. He offered me Vicodin (hydrocodone + tylenol) for a month to try. He urged me to only take as much as I needed, and to avoid taking it if possible. I don’t want to get addicted to anything or build up a tolerance to anything either, but if it worked?

Boy, did it work! I took a pill that night and my back improved tremendously. I’ve always had a problem with the “Pain Scale” (link shows 1-5, though my doctors operate on 1-10) because my pain was always so mixed and complicated, and all over. I used to say I was always at an 6 to an 8, depending on the day. But once I experienced a moment with NO pain? Holy cow, I realised I’ve been living at a 9/10 or 10/10 for the last couple years. It’s been so awful that now that it’s gone, I realise exactly how bad it was. Now I’d say I’m at a 2/10, where it hurts just a little, but it’s SO much more bearable, that it’s fine.

You’d think because I was taking narcotics, I’d be sleeping all the time, and I’m really not. I admit I feel fatigued (which is different from tired), and that makes it hard to just jump back into things, but I’m in LESS PAIN. Being in less pain gives me energy! I can walk around a store with my husband! I’ve even gotten back into the kitchen to cook, which is something I haven’t done in a few months.

Also, I asked about a muscle relaxer for the fibro, and my GP offered Flexeril. I take it at night, instead of a Vicodin, and it relaxes my knotted shoulder muscles enough to make it easier to sleep. Sometimes I put the heating pad on my shoulders, too. The last 3 nights, I’ve slept through the night (except to get up to pee once), and woken up feeling better and in less pain than usual.

Who knew this was even POSSIBLE? I can’t help but wonder if this is only a very temporary effect, but even if it is, I want to remember what it was like to have a little bit of my old body back. And I want to document it!

I haven’t found a cure, but I may have found a way to manage my pain.

more of the same.

February 22, 2009

Just a short update. I still haven’t gone back to my GP to request the rheumatologist’s suggestion of Lyrica and Cymbalta. The more I think about it, the less interested I am in taking a drug for depression that could affect my brain chemistry (because I’ve had problems with SSRIs in the past, even though this isn’t an SSRI), and Lyrica is known for weight gain. Perhaps if my doctor could promise to refrain from giving me shit if I gained weight from taking it, but I’m not sure that is physically possible.

I’m still learning limits and on days when I’m not hurting, I’m usually exhausted, so I sit around frustrated at all the things I’d like to do but lack the energy to do. Frustrating isn’t even an adequate word to describe how I feel.

I’m planning on making a doctor’s appointment this week so he can document in my medical record that I quit a part time job for health reasons. I’m thinking about applying for disability, too. I’m dreading seeing the doctor again, for various reasons, not the least of which being I don’t feel like he takes me seriously.

And another fibro update: I know I’ve had more stomach problems the longer I experience fibro symptoms. I don’t know if it’s outright IBS or not, but it sure seems like it. I’m normally a healthy vegan eater, with lots of protein, good carbs, fiber and veggies. But a friend gave me some M&Ms candies two days ago and I had a small handful. Then later I had a pina colada with whipped cream on top (okay I had two of them), and I figured since I was already hurting, what could a little more damage do?

A LOT. OMG, I was MISERABLE. Stomach pain, trips to the toilet, repeat repeat repeat. It was terrible. Another lesson learned: NO DAIRY.

learning limits

February 12, 2009

My husband was an automotive industry casualty, as of just a couple weeks ago. Because our current location does not hold much for us, we’ve decided to pack up and move to another state where we’ll have more opportunities, better weather, and a change of scenery. So my job (with hubby’s help) has been to sort out what we no longer need and don’t want to lug across state lines. This involves a lot of freecycling and selling items on craigslist and ebay. I’d been slowly decluttering over the past several months anyway just because it’s a good thing to do, but now we’ve kicked it into high gear, and have started boxing up things we’re keeping but not using. We’re planning to leave in the next 2.5-3 months.

Yesterday we picked up some small book boxes (1ft cubes), and I boxed up about 8 of them with paperbacks, text books, some knicknacks, etc. I was lifting boxes of books and putting them on the shelves to keep them out of the way, but since everything was in close proximity (not a lot of walking with heavy objects), I thought this was the perfect job for me.

Wrong. :( As soon as I slowed down and took a break, I started stiffening up. I got help getting my TENS unit on my lower back, which helped a bit. By the time I went to bed a few hours later, my shoulders were hurting so badly that I was sick to my stomach. I used an electric heating pad for awhile, but it didn’t do much. I woke up feeling only slightly better.

And today I’m exhausted. I’m in a lot less pain now that I’ve been up for awhile, but I’m pretty much useless as far as being active goes. I’ve managed some more ebaying (anyone want to buy an audiobook?) but not much in the boxing department.

So I’ve learned an important fibro lesson today: You can overdo it without having a clue you’re overdoing it. And what is considered “overdoing it” today might not be the same as what was “overdoing it” last year or next week. It’s like a big game of fibro roullette. And while I feel like the fibro is in charge right now, I’m slowly getting the hang of it, and soon it won’t be. Because I really want my life back.

my mother

February 8, 2009

I grew up with very overprotective parents. They wouldn’t even let me ride a bike, because the feared I’d get hurt, or kidnapped, or something. They were always heavily involved in my healthcare because I’ve had asthma since I was a baby, and they were so paranoid about keeping me healthy and safe.

So when I got my “preliminary” fibro diagnosis, I told my mom on the phone (my parents live very far away), and she said “oh” or “oh yeah?” or some other noncommittal response. I thought maybe she was preoccupied or hadn’t heard me. Last night I told her I went to a rheumatologist, who confirmed that I had fibromyalgia, and she said “yeah you said that already.” No questions, no “gosh that’s too bad,” no nothing.

I’m not sure if she didn’t care, or didn’t know how to care. I would have appreciated some dialogue about fibro and what that means for me. Maybe a discussion about how it’s impacting my life compared to pre-fibro days.

This is all making me realise my parents are not the support system I expected them to be, and further confirms my opinion that family is the people who care about you, and that may not involve sharing DNA. I’m sure my mother cares about me, but she’s not very good at showing that. It’s a shame, since it’s obviously caused our relationship to suffer.

I’m interested in reading other people’s experiences when they’ve “come out” to loved ones as being a “spoonie.”

I’m so thankful for my support system as I go through this. Even if it doesn’t include my mother.

The first diagnosis

February 6, 2009

I thought it might be helpful to talk about how I came about being diagnosed in a half-assed manner by my GP. I’d actually mentioned a year and a half ago that I was concerned about my achey, sore, weak wrists and knuckles, but he shrugged it off, I lost my insurance, and it went undiscussed for a year. A few months ago, I walked into his office again and said there’s something wrong. I’m exhausted, I’m achey, I’m different than I used to be. He ran a CBC (complete blood count) and told me to take ibuprofen.

I can’t take NSAIDs because of my GERD. It’s exceptionally painful and causes severe reflux. Not to mention these drugs don’t even touch my aches and pains. (I’ve tried. It’s useless.) The doctor said to take them anyway.

My CBC was normal. He ran several of them over a few months, everytime I went in there and asked for a rheumatologist, and even once ran a rheumatoid factor (normal, no rheumatoid arthritis). My SED rates were always sky high, but he never ran ANA. Everything else was mostly normal, although I have high platelets.

I told my doctor during one visit that I needed this documented because I didn’t want to discover it was “all in my head” as some professionals believe fibromyalgia is a psychiatric disorder. He told me “it’s not all in your head, but there’s nothing I can do for you.” I told him I wanted a diagnosis. If I have fibromyalgia, I want to have a name for what’s changing my life.” He told me, “Fine. You have fibromyalgia.”

Well that was anticlimactic.

So he prescribed tramadol for the pain, and amitriptyline to help me sleep better and hopefully give me more energy during the day. The amitriptyline made me a daytime zombie and robbed me of what little energy and productivity I had, so I stopped it after 2 weeks. I was on a low dose, and couldn’t go any lower. The tramadol helps take the edge off, but it’s far from perfect.

Of course, it should be noted that during all of this, he was always telling me that if I lost weight, that my symptoms would diminish.

The final request for a referral was my third formal “please give me a rheumatology referral” request and I brought my husband in for backup. My husband noticed that, when I was asked why I felt I needed one, the doctor looked visibly insulted when I said, “I’ve tried your way, and I still feel badly. I think it’s time we escalate this to someone with a little more experience in dealing with these disorders.” Visibly insulted! Nothing like a doctor taking his work personally. But I got my referral.

I guess the lesson is that persistence pays off. And insults doctors.