Testing For Fibromyalgia

October 27, 2009 at 12:47 am (Fibromyalgia, Fibromyalgia Research)
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I am somewhat fortunate enough to have a girlfriend who also suffers from Fibromyalgia. I say somewhat of course, because nobody ever wants their good friends to suffer – especially if they know the extent of the suffering.

My friend Val is amazing. She knows how to research and takes care of her body. She really motivates me when I’m not feeling so motivated. Our symptoms are different, she suffers a lot from fatigue, arthritis like stiffness and has even had random bouts of unexplained paralysis during sleep, while I suffer from myofascial pain, fatigue, and TMJ-like symptoms.

However, we do overlap quite a bit. Just like her, I suffer from fatigue, and we both suffer from forgetfulness, losing words and memory.

We also have taken two different approaches to our treatment plans. Without insurance, my friend doesn’t see the doctor a lot. Instead, she invested wisely in acupuncture, researching and interviewing acupuncturists before paying for treatments. She also changed her diet. In the year or so that I have known her, she has lost a ton of weight, is eating healthy and experiments with supplements (some work, some don’t) and vitamins. She looks great and feels great!

We met for lunch the other day and over sandwiches she admitted that she had felt the best she has felt in years! She chalks it up to the acupuncture and dietary changes. This is not to say that her Fibromyalgia has gone away. After a recent “bad day” she could not believe the difference in her body from feeling mostly normal to feeling completely wiped out. And she couldn’t believe she lived most of her life with bad days prior to making lifestyle changes.

My tactic for handling this disease has been somewhat different. I have relied on medication and physical therapy, trigger point massages and stretching and sometimes meditation to allay my symptoms.

Despite the differences in our treatment, we are both at similar levels of functioning (give or take that she is in much better shape than myself). She works part-time at a health food/vitamin shop. Working a limited number of hours allows Val to take care of herself, to exercise, eat right, and rest frequently. Her employers know that she has Fibromyalgia and when the store is slow, she has some downtime. While her work schedule does vary, she averages about 20-25 hours per week.

Me too. During the week, I am the primary caretaker of my son. Two nights per week I teach for 4 hours and then on weekends and at other times during the week, I grade papers, send e-mails to students and keep up with faculty obligations. Outside of this, I have a very small monthly job that requires a lot of work from my computer at home and one in-person meeting a month, sometimes two.

I average roughly 15-20 hours of work per week. But, except for the 4 hours in the classroom – I can do most of my work from home, on my own time, and in my own space. This means on bad days, it is okay if I send an e-mail from bed, or grade in my pajamas from my couch.

The fibromyalgia experience seems to be different for everyone, making diagnosis just as difficult. Recently, however, a study conducted by Autoimmune Technologies suggests that those with Fibromyalgia or Fibromyalgia-like symptoms may have elevated levels of an Anti-Polymer Antibody Assay (APA Assay), which indicates an abnormal immune response and can also indicate the severity of Fibromyalgia.

Why would we need to know this information? It is the first step in developing a blood test to determine if a patient has Fibromyalgia, how severe it is, and if medications would work in treating their symptoms.

Personally, I see the good and the bad sides to this.

First, it is just another way to confirm to doctors and the general public that Fibromyalgia is indeed a physical illness, not a mental one. Also, testing for these antibodies can also determine if a patient has another disease, such as Lupus, Arthritis or other connective tissue disorders by ruling out Fibromyalgia.

But, I’m still a skeptic. I’m skeptical that the test won’t be used as a way to weed out chronically ill patients, to deny treatment, or even worse, to charge huge amounts for high-cost pharmaceuticals because this is what the blood test recommends.

Still, maybe that is really just the skeptic in me. It is hard after so many years in the ins and outs of the experiment that is the medical system and medical research to accept that medical research companies are out only for profit and not to help the patient. I’d like to think that there are some valid and independent labs out there who really care that this test will help those already suffering with Fibromyalgia.

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Fibromyalgia, Sleep, Chronic Fatigue and Viruses

October 18, 2009 at 3:11 pm (Fibromyalgia, Fibromyalgia News, Fibromyalgia Research)
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Awhile back I posted a blog about Lyme Disease. Proponents and researchers of this elusive infectious illness carried by tiny ticks argue that Lyme Disease causes long-term chronic consequences and could require long-term anti-viral treatments, especially if it is not identified and treated aggressively from the get-go.

Lingering symptoms of Lyme Disease can be Fibromyalgia and Chronic Fatigue-like in nature, with both neurological, and physiological symptoms.

According to some recent research, Lyme Disease is not the only virus that can cause Fibromyalgia and Chronic Fatigue-like symptoms.

Recently, researchers have discovered that a virus, similar in style to the HIV virus has been found in a trial study in the majority of patients with Chronic Fatigue Symptoms.

This virus, also found in the cells of patients with prostate cancer may be the key to these so called “in-your-head” illnesses, which are creating health issues on a global scale.

As anyone with Fibromyalgia may already know – there was a time in their lives when we didn’t feel so crappy. In fact, this could even be what makes Fibromyalgia even worse – we know what we are supposed to feel like and we spend a lot of time, money, emotions and other personal resources to try and get back to our physical shangri-la.

Lately, my sleep hasn’t been so great and the regular tricks have stopped working. I’ve longed on some nights, as I stare at the clock woefully, for someone to just hit me with a mallet or sedate me with an elephant tranquilizer.

I’ve tried the usual, quiet activities at night, not staying in bed if you aren’t tired, cleaning the toilet (Thank you Dr. Phil), Ambien, natural sleep aids, chamomile tea, warm milk, different pillows, pajamas, mattress toppers, electric blankets, a bedtime ritual………the works.

But when bedtime rolls around, I am completely wiped out, but unable to sleep.

Yet, it is so confusing – my sleep study came back normal. Of course, they have you come to the sleep lab at 9:00 p.m. and then keep you up chatting and moving around until around midnight and then leave you to read until 1 a.m. and wake you up by 5:30 a.m. so you can go home – perhaps I should recreate this scenario at home? Complete with wires and all?

Could a virus really be responsible for all of this? I think about the many mornings I wake up with a stuffy nose and a sore throat – or the random days I have a cough, but no other symptoms, the extreme fatigue and flashes of low grade fever that doesn’t seem to rise or fall. A general feeling of ick. Like I never quite got over that seasonal cold.

Anyone with Fibromyalgia will tell you they have flu-like symptoms coupled with pain and fatigue.

Could an anti-viral solve our problems? And if so, will our insurance companies cover it?

Sign me up. I can’t be the first person to wonder if little tiny bugs are causing all these issues – humanity has dealt with viruses since forever, ad it is clear with H1N1 that we still haven’t made too much progress over the last few decades to handle them.

Now, only one question remains – will our insurance companies approve retrovirus medications for the treatment of Chronic Fatigue Syndrome?

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Fibromyalgia Maintenance

September 13, 2009 at 2:02 am (Uncategorized)

When I was first diagnosed with fibromyalgia, I was so frustrated. I had some doctors telling me I was crazy, others saying that it had to be some other physical ailment, and, the most discouraging, doctors who told me that I would always have to be on some sort of medication and pain management program.

I tried my very best to avoid the cycle. I avoided medications as long as possible, tried to hold my job as long as possible, and struggled to finish my education, despite FM and other life obstacles.

But, I couldn’t do it alone. I needed that medication and pain management help. Luckily, after 12 years of searching and experimenting, I’ve found a combination of medications that work for me. But they don’t take away the pain on the “really bad” days, and they don’t take away the fatigue.

So, I’m struggling this week to find a maintenance routine. And it is anything but easy when you have a family that needs you to help out in normal ways.

Currently, I teach college night classes two nights per week, four hours per day and I also have a part-time job with the college I work for that takes up about 20 hours of my time per month. I feel proud that I can contribute to my family income, even though it isn’t much, because I know and have known so many people with FM who just can’t.

At the same time – I wonder if my home life suffers too much. My husband is definitely my caretaker and bares the brunt of household tasks. If something needs fixing, he’s on the job. He wakes up with our toddler in the mornings and gets breakfast and feeds him and puts him to bed at night. Thankfully, our little one doesn’t wake up in the middle of the night anymore. But when he did, it just about  killed my husband, who is also the primary care giver.

I’ve tried different methods in the last three years to make up for this. Once, I hired a maid. This definitely helped, but took a huge chunk out of our paychecks. Then (and now) I hired home help for my son so I could get more work done during the day (or rest). I’ve now settled into a pretty routine schedule with my toddler. One morning per week we go somewhere fun (zoo, museum etc.), two mornings per week for 4 hours I leave the house and he stays with a babysitter who has a child the same age (built in playdate!), one afternoon per week we have a playdate with a mom friend of mine and one day per week is a low-key, around the house or mommy errand day. Afternoons are usually filled with lunch, naptime, sometimes a movie and outdoor time.

So, we have that routine down. But, as with probably all marriages, it is the little (and sometimes big things). My husband gets tired of cooking dinner, and sometimes, he just gets tired of honey-do’s and things like me asking if he can hand me a pillow or move a more comfortable chair onto the patio.

The pain is managed, but the fatigue remains and my insomnia and sleep problems don’t help either. Of course, I work with my doctors on all of these issues, but I can’t take Ambien at night and hope to get up with my son in the morning and my pain levels and fatigue levels are so inconsistent that I can’t promise my husband that I will do the dishes at least 1 per week.

Then there is the other side – which is simply this: when I feel good – I don’t want to waste that good feeling on dishes! I know, this sounds just plain slothful. On my good days, I want to create art, write, get ahead on my job, or just spend time watching a movie with my husband. It is so hard to explain to my husband that with my good days I just want to do something fun for a change. Not take medication, not arrange heating pads, not lay in bed (I HATE laying in bed and I used to enjoy it!). I just want to be a 26 year old, hang out at a coffee shop without my toddler and talk to a friend over coffee.

I know, this sounds completely selfish and where is my sense of personal responsibility?

So, I’m looking for solutions and compromises. The past 2 days have been bad pain days, but I’ve helped a bit by bit – putting away clothes (slowly), cutting up veggies for dinner (even if my husband had to hand me the veggies, knife and chopping board) and shopping for food etc.

But, it doesn’t take away from the fact that I wish I had a live in wife who could do all the things a wife is supposed to do, like make the home a warm and clean and beautiful place, put a nice meal on the table every night and manage to look put together everyday for her husband.

Sigh….I know I can get there.

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Fibromyalgia and Mental Illness

August 19, 2009 at 8:04 pm (Mental States)
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I have been diagnosed with Fibromyalgia by 4 different doctors, in four different states, with four different perspectives on what causes this disease and how to manage the symptoms.

After trial and error with various medications (and various doctors) I went to a pain clinic and discovered there are people out there who care! I also found a new primary care physician through a Fibromyalgia Network referral. She has made a world of difference in the way I feel about my illness and what to do about it.

With my “Fibro” team of doctors in place – my pain has become pretty bearable! I have way more good days than bad ones. Currently, the “Fibro cocktail” I use to keep my symptoms at bay include an anticonvulsant, a painkiller and a muscle relaxer.

It took a ton of trial and error (12 years and counting) to find a successful mix of medication for my particular symptoms. However, I am happy to say that with a lot of effort and work I am mostly pain free most days of the week.

However, in the last six months of no pain, another, disturbing set of symptoms have began to surface – mental symptoms.

I’ve always been a huge advocate that Fibromyalgia is not necessarily “triggered” but something we are born with (I remember FM symptoms from as young as the age of 5).

Of course I’ve heard many stories from those who contract FM after surgery, from an accident, chemical ingestion, vaccines and childhood abuse or some sort of emotional trauma. I’d not to my friends politely and think – they must have something different – I’m not crazy, my symptoms are REAL, not in my head.

However, after years of repeating this mantra and now six months of living pain free, I began to realize that I have symptoms unrelated to Fibromyalgia (or maybe trigged by FM or the other way around).

I’ve had periods of deep depression in my life as well as fantastic highs.

With all of my mental symptoms, I kind of always figured it was due to stress. For example, I left home at 16, started college at 17, got married at 18, moved about every six months to a new city or new apartment. Got divorced at 21, remarried at 22, had a baby at 24, bought a house, finished my M.A. degree and began to work part-time and mom full-time!

But now, I’m 26 and I can genuinely say that for the last 2 years, my stessers have been few. I love teaching college students part-time, I love raising my son (even if I need the occasional babysitter), I have begun to build a circle of friends and for the most part, there isn’t a whole lot that I’m required to do in a day.

Still, I was in constant fight or flight mode mentally. I’d call my husband home early everyday for weeks, until he lost all his vacation time. I’d hire nannies and babysitters to care for my son for a few hours a day. I wouldn’t clean, even on my good days. Not because of my Fibro, but because I could not mentally get there. I’d cry for no good reason and I spent most of my days in bed.

I’d go between feeling completely depressed to completely happy in a matter of mere minutes. My husband became resentful. He observed that I seemed to have plenty of energy for shopping and meeting friends for expensive lunches, but couldn’t seem to pull it together to do the dishes or even my own laundry,

When my emotions went haywire, they really went haywire. In an emotional state of anger, I’d yell, scream and break things – or, I’d simply get my carkeys, wallet and laptop and head to a hotel for the night in a vain attempt to calm myself down and collect myself.

Above all, the safety of my child is what counts most.

The last time I left for a hotel (two weeks ago), I realized there was something really wrong with me. I couldn’t blame my constant chattering and high spending and then my stay in bed and do nothings on Fibromyalgia. I was mentally unstable.

I quickly took myself to my doctor, who diagnosed me with bipolar disorder. To stabilize my moods she put me on Zyprexa right away. Though it is a drug with some scary side effects (weight gain, diabetes development risk) it was even scarier to imagine going into another rage or panic or sad day.

She also gave me the number to several different Psychiatrists in the area. It took me a whole week to get up the courage to call and make an appointment.

Bipolar treatment works the best with intense psychiatric help as well as medications.

Now that I’ve taken a mood stabilizer, I don’t feel the urge to be a chatterbox, nor do I feel the urge to stay in bed. I guess the medication is working. Don’t get me wrong, the feelings are still there, I just don’t have the sudden urge to act on them as I did just a few days ago.

My doctor made it clear that to make progress in therapy, I would have to get at the heart of my anger in order to get to a place of recovery. After many questions about my past from my doctor, I revealed my abusive childhood and teenagerhood.

When it comes to problems of the past – I’ve always been the kind to talk about them to close people, but overall, just to try and avoid them. But I cannot run from these issues any longer. I have to face my abusive past and hopefully learn skills that can  help me deal with my future. If it was only as easy as taking a pill right?

I’m really looking forward to becoming as healthy as I can. Hopefully, as my mental issues improve, my Fibromyalgia will also.

I’d still like to hold on to the idea that Fibromyalgia is a true disease – but maybe I’ve wrong all along.

It isn’t easy to come to terms with a mental illness. When my doctor asked why I was nervous about coming in I told her the truth – I was ashamed. It was easier to blame my mental state on everything else but a mental illness. To blame it on the pain of Fibromyalgia (which can cause severe depression), or postpartum depression, or a stressful life. Anything but bipolar disorder, an illness I fear will truly be with me the rest of my life.

Fellow fibromites, don’t assume your highs and lows are due to medication or fm stress alone. It is in all of our best interests to get as much help as we can dealing with mental issues.

I have a whole new respect for those suffering with manic depression, severe depression and other mental diseases.

Now I have a new label – crazy person.

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The benefit of medication for fibromites

July 31, 2009 at 1:38 am (Fibromyalgia)
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Last month, I made a decision on my own (with consultation from my doctors) to cut down on the medications I take for my Fibromyalgia.

I want to have a second baby and I wanted to be as healthy as possible pre-conception.

At first, I thought it would be no problem to cut out 1 medication completely and just take 1/2 my normal amount of another medication.

Unfortunately, this didn’t work out so well.

Pain hurts. But aside from that – pain can make you angry, irritable and depressed. As I experimented with my meds (under Dr. supervision) I faced all of these emotions on TOP of feelings of withdrawal from certain medications.

After what felt like my hundredth emotional breakdown (especially during rainstorms) I realized just exactly what my medications did for me.

Currently, I take 2 medications for my Fibromyalgia. I was taking a 3rd, however, knowing that I wanted conceive in the near future, my doctors felt it was in my best interest to rely on short-acting medication and not the long-acting and potentially harmful to fetus, medication.

Each medication does something different for my symptoms. My pain medication relieves my pain, but I also think so much clearer and am so much more “together” when I am not in pain!

As I tried to step down my medications – my concentration went out the window. I lost my wallet (in my own house) and other important items, I was a mess at work and could barely hold a civilized conversation with another human being. I felt sluggish, I didn’t want to exercise, sit or stand for long periods of time.

My second medication – a muscle relaxer, is vital to my sleep. As I backed off of this medication, my insomnia slowly returned and I could not get a good nights sleep. I would wake up in the morning unrested, angry and irritable.

The combination of pain and fatigue led to depression and I felt myself slipping backwards, to the terrible place I was two years ago, before I wised up and went to a Pain Clinic and found a fantastic primary physician.

I realized I needed to up my medication levels.

Today, I feel back to normal. However, I have found I can be okay on slightly less medication per month than what I was taking.

Now, I try my hardest (following my doctors advice) to take these medications “as needed” instead of as many times per day as my prescription label recommends.

This has really given me space to determine my really bad days and my not so bad days. On good days, I don’t take as much (sometimes only taking 1/2!) and on the bad days I take the recommended dose. On really bad days – I call my doctor.

With the HUGE amount of confusing information and recommendations on Fibromyalgia out there – what I found was that you need to do what reduces your pain and fatigue levels – and not be pressured into doing something because that is the “buzz” or “trend.”

Sure I have run into people that tell me their Fibro was cured with exercise, weight loss and a gluten free, supplement rich diet. Others swear by trigger point massage, chiropractors and accupuncturists. And still others tell me their lives would be nothing if it wasn’t for their morphine drip.

At this point – I know not to pass judgements on another persons for their treatment preferences for Fibromyalgia. I know that the treatments I use are vital for me.

As for preparing to TRY and get pregnant again – it is taking longer than expected. I definitely want to reduce the amount of medication I take before I try to get pregnant and I will need to cut the muscle relaxer I take completely before I even attempt to get pregnant.

However, slow and steady is the way to go.

Note: Always consult your doctor before messing with your meds! I talk to my doctors all the time and have my pharmacist on speed dial!

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New Book The Fibromyalgia Controversy

July 4, 2009 at 7:23 am (Fibromyalgia Books, Fibromyalgia Research)
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Soon, a new book on Fibromyalgia will hit the shelves.

Dr. M. Clement Hall is the author of the upcoming book “The Fibromyalgia Controversy.”

Though I have not reviewed the book, the reviews say it is an “unbiased view” of Fibromyalgia. Dr. Hall uses his clinical experience to create six “composite” characters with chronic pain complaints and also discusses the history of Fibromyalgia, common treatments and arguments.

Now, I know I haven’t read the book. However, I will say one thing about books that surround the Fibromyalgia “controversy.” I have yet to read one that is “unbiased.” Books written about the controversy are almost 100% guaranteed to disprove Fibromyalgia as a disease and discount the notion that it should be considered a diagnosable illness.

This seems to be the case with Dr. Hall’s upcoming book. Reviews mention that Dr. Hall reveals how the medical community “invented” the Fibromyalgia diagnosis.

I’m not sure what Dr. Hall’s take is on the “creation” of Fibromyalgia as a diagnosis. The reviews seem to indicate that his take on the diagnosis is a fairly recent even. However, Fibromyalgia, the collection of symptoms including pain, fatigue, brain fog and other symptoms, have been around for a long time under other names. But, this was not an “invented” diagnosis.

I understand Dr. Hall’s point. He argues that we are doing a disservice to pain patients by giving the diagnosis of Fibromyalgia to describe all chronic pain. However, we are doing a disservice to patients WITH widespread chronic pain by NOT providing a diagnosis.

As a patient, I was relieved to receive a diagnosis. This meant that I could create a treatment plan and have something tangible to grapple with when I went to the doctors. At the same time, now that Fibromyalgia IS recognized as a DISEASE, not a syndrome, insurance companies are MUCH more likely to cover costly medications, from muscle relaxers to pain pills to anti-depressants.

I’ve heard Dr. Hall’s arguments before. The “We believe the pain is real and not psychological but that doesn’t mean it is bad enough to need pain medication to manage.” The translation for this from me? “We don’t know what the hell is wrong with you and while we can’t say you DON’T have a disease, we can’t say you DO, so we would rather not risk treating your pain with actual pain medication because we don’t want to be held liable in the event you are actually faking.”

Dr. Trock’s book Healing Fibromyalgia takes the exact same approach and talks about these same arguments. Dr. Trock approaches Fibromyalgia the same way as Dr. Hall. “We believe patients are in pain, but there is no evidence that proves they are actually in pain.” What does that even mean? “We believe you, but we don’t really believe you.”

One frustrating aspect to these books is that Fibromyalgia treatment and diagnosis has actually come a long way in recent years, from brain scans to studies. And, many stereotypes of Fibromyalgia have been disproven, such as the fact that MANY MEN are diagnosed with Fibromyalgia. Just because women COMPLAIN more doesn’t mean that (as Dr. Hall states) 95% of those with Fibromyalgia are women. In fact, if you listen to specialists in the field, such as Dr. Daniel Clauw, who study Fibromyalgia in-depth (and are not just basing their opinion on patient anecdote) Fibromyalgia affects women and men practically equally in this country.

We are doing MEN with Fibromyalgia a HUGE disservice by making these incorrect and unsubstantiated claims. Especially when they come from medical professionals. We are also doing women a disservice, by once again implying that women in pain are merely “complainers.” When did we slip back into the dark ages of medicine?

Unfortunately, these books seem to serve one purpose – to confuse the general public on an issue that really isn’t THAT controversial. As I have said on several blogs, Fibromyalgia isn’t THAT hard to diagnose and does not actually mimic THAT many other diseases.

Dr. Hall says that we don’t know much about pain yet, just like we didn’t and still don’t know much about germs. Yet, every year we create a new flu vaccine for the comfort and protection of our population, even if we don’t know what strain will actually hit us come winter.

I guess those of use who are long-time sufferers of chronic pain are not entitled to the same courtesy. Instead, Dr. Hall wants to encourage doctors to do more research and not give a “wastebasket” diagnosis (there is a buzz word if I ever heard one. Doctors said the same thing about Lupus once).

Personally, I find it laughable that anyone would suggest that it is a “medical community made disease.” My doctors fought tooth and nail NOT to diagnose me with this illness until it became undeniable. I have not been diagnosed by just one doctor, but several, including a doctor who HAD fibromyalgia!

So where do these books leave patients? Currently, in limbo. Once again a doctor is trying to convince the masses that Fibromyalgia is something controversial. It isn’t. Or that because it requires individual treatment plans, it must not be a real disease – bull.

So what can patients do to counteract these “controversy books?”:

  1. Blog, Blog, Blog! Write your own blogs about your experiences and treatments
  2. Write reviews on these books, outlining the good and bad.
  3. Set a GOOGLE ALERT for Fibromyalgia so you can stay tuned to harmful articles by commenting with your own experience and setting the record straight.
  4. Raise Awareness: Check out the National Fibromyalgia Association, use Facebook and other social media websites to join Fan Groups that support Fibromyalgia sufferers and wear a Fibromyalgia ribbon on National Fibromyalgia Day.

Have any other suggestions? Please feel free to leave comments!

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Fibromyalgia and Acetaminophen Ban

July 1, 2009 at 7:38 pm (Fibromyalgia, Fibromyalgia News)
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On Tuesday, June 29, 2009, an advisory committee voted to ban Vicodin and Percocet and to lower the amount of acetaminophen in over the counter products.

Some have reported that the FDA is not required to follow the committee’s recommendations, although it is said that they normally do.

As a long time user of pain medications as one part of a larger treatment plan to control my Fibromyalgia pain, this decision will no doubt cause an upset in the chronic pain patient community.

The reason behind the ban? Liver damage. Vicodin and Percocet are both combination drugs, part narcotic, part acetaminophen. Many times, patients taking Percocet or Vicodin (especially chronic pain sufferers) are not aware that taking additional products with acetaminophen (such as Nyquil or extra Tylenol), especially on a regular basis, can contribute to hurting your liver.

And although it is recommended that patients taking these medications have annual liver function tests, I have yet to have a doctor recommend this for me. Instead, I rely on my regular pharmacist, who constantly and frequently advises me NOT to take additional acetaminophen while on this pain medication.

Though overdose is not seen to be as big a problem in over the counter drug use, it does still occur. With this in mind, the committee recommends lowering the amount of milligrams available over the counter.

With the ban, drug companies will be forced to offer products that do not include acetaminophen and to offer lower dose over the counter products with a limited number of pills available to a person without a doctors prescription.

So, if this is a move that can save lives (and livers), why are my panties in a twist?

Well, awhile back, there was another advisory panel that explored ways to reduce the use of prescription pain medication in this country. Overdoses of drugs such as Oxycontin and Fentanyl were at the source of this – and most of these overdoses came from people acquiring these drugs illegally. However, what started out as a preventative measure, seemed to end up with a discussion on how to limit the number of chronic pain patients taking pain medications for conditions such as Migraine Headaches, Severe Backackes, Fibromyalgia and Arthritis pain.

Instead, the panel argued that these conditions should be treated with medications specific to them. And if the “specific” medications didn’t do the trick? Well, patients should try alternative treatments then, such as Bengay and Heat Packs.

Heat packs huh? Around this same time, a new study on alternative treatments for Arthritis showed that muscle creams, heating pads and diet did nothing to improve the pain of arthritis. Sure, if it makes the patient feel better – then by all means go for it. But don’t confuse that lovely warmth of a muscle cream to reduced pain.

So, where did these discussions leave chronic pain users? Well, so far black box warning suggestions, frequent physician monitoring and less accessibility to pain medication from your primary care physician (hello Pain Specialist co-payments and fees).

I personally have always been concerned about the use of acetaminophen in these medications. After all, I’m not taking the medication for the acetaminophen. But banning these medications, which so many of us chronic pain sufferers rely on, is also quite disturbing to me.

If a ban were to take place – I imagine that physicians would use this as a reason to remove many of their chronic pain patients (including Fibromyalgia patients) from narcotic pain medications altogether.

But what is the real problem with that?

I’m not normally a conspiracy theorist, but it is interesting to me that all of these conversations are occurring at the same time and during a time where our healthcare system is in flux.

Here is what I am noticing:

  • The FDA and other advisory boards are pushing to get chronic pain patients off of narcotic pain medications, even though these patients are not the people overdosing or abusing these drugs.
  • A ban may promote use of more “Illness Specific” treatments for diseases such as Fibromyalgia, Arthritis, Migraines and Back Pain, leaving narcotics for acute treatment only.
  • Primary physicians are not as willing to provide pain medication (especially for chronic pain patients) for fear they will be reprimanded by insurance companies and medical associations.
  • In turn, doctors are now focusing on alternative treatments for pain and/or are referring chronic pain patients to specialists.

So, what is the big deal? For me, it comes down to money and validation.

First, Fibromyalgia often goes untreated because Lyrica and Cymbalta, the only two approved medications for Fibromyalgia, are quite expensive, especially if you do not have insurance. Additionally, in my own personal opinion, the side effects and risks of taking Lyrica and Cymbalta is so much higher than taking Percocet or Vicodin (in small doses monitored by a physician and reevaluated on a regular basis).

My other blogs go into the narcotic pain medication debate in treating Fibromyalgia, but I will say that for many Fibromites, it is a necessary aspect of a larger treatment plan (including exercise and alternative therapies).

While Percocet costs around $6.00. Lyrica and Cymbalta? With insurance, possibly $50, but can be upwards of $200 per month.

Going to a specialist can cost more in co-payments and out of pocket expenses. And, in my experience, most pain specialist want to treat you and street you back to your primary physician with a list of recommendations and medications. But, if your family doctor is concerned about prescribing this medication – then back to the specialist you go, who in my case, reevaluates me once per month. At $200 per office visit, plus the prescriptions and the co-pays, my out of pocket expenses often exceed my income (see my post on Fibromyalgia and the Economy for more on this issue.

Do I find it a bit suspicious that these supposed “solutions” to protecting chronic pain patients health come at a giant expense and with a number of unknown side effects and reactions? Drugs that are labeled Class C, which means they are considered very dangerous during pregnancy and breastfeeding?

Do I find it a bit questionable that the committee would vote to ban 2 of the most commonly used pain medications for chronic pain patients without any mention of what would become of patients pushed off of their current medication?

At the least, the FDA will put a black warning label on these two drugs warning patients not to take products that contain acetaminophen while taking these drugs (unless directed by a doctor). At the worst, the FDA will ban these drugs right out and thousands of chronic pain patients will be left with no alternative but ultra expensive medication piled high with a billion side effects.

My last opinion on this topic has to do with the never ending quest for validation of this disease by doctors and the main stream public.

In telling chronic pain patients that we don’t need pain relief, but that there are no alternatives so we are just going to have to “deal” with it – once again invalidates us, and every chronic pain patient in this country, who spends the money to go to that specialist, who checks in with doctors, who goes to the same pharmacy and has no problems taking a urine test to prove they are not overdosing or selling their pain medication.

Fibromyalgia patients deserve to have access to pain medication (with or without acetaminophen). We deserve to have cheap, legal options that our regular physicians can prescribe to control our pain.

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Fibromyalgia and Grey Brain Matters

June 22, 2009 at 7:05 pm (Fibromyalgia, Fibromyalgia Research)
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I’ve been diagnosed with Fibromyalgia since I was 15 and a sufferer for who knows how long.

I am also pretty computer savvy, reading almost every single news article and medical study on Fibromyalgia since I was a teenager.

Now, I set up a Google Alert on the topic just so I can conveniently keep up with what is going on in the world of Fibromyalgia. Most of the time lately, it has been editorial commentary making fun of Fibromyalgia.

The disease is finally being recognized in a more legitimate fashion by physicians and researchers who have over the past few years, attempted to set up protocols and standards of diagnosis and treatment.

Unfortunately and fortunately, big pharma has finally seen fibromyalgia as a veritable gold mine.

Revived interest in fibromyalgia has led to some great new studies on disease treatment and origins.

Unfortunately, commercials for drugs such as Cymbalta and Lyrica have lead to eye rolling from doctors and the general public alike – many of whom are still on the fence when it comes to viewing fibromyalgia as a legitimate chronic illness.

Many of my friends and even a few family members roll their eyes and express something to the effect of “Another made up disease by big pharma companies.” While I would like that to be true – I have to say, as a long time sufferer (before the commercials and before doctors even knew how to pronounce fibromyalgia) hearing these comments from anyone is quite hurtful.

Think of all the diseases, illnesses and treatments we have discovered in the last few decades alone. Still, in this political and economic climate – those living with fibromyalgia have a huge load to carry. We constantly have to prove to our friends, family and doctors that there is indeed something wrong with us at the same time that mass and popular culture try to invalidate us. Whew! Makes me want to take a nap just thinking of this.

The comment that is hardest to hear is that we are all just a group of fakers.

I will say that fibromyalgia would not be an easy illness to fake. You would have to go to some pretty extreme measures. Quit your job or cut your hours (in this economy?), gain weight from not exercising, pay about a billion dollars in medical bills and co-payments, experiment with a variety of non-medical, medical and psychological evaluations, become prepared to use those motorized carts in the grocery store while onlookers young and old give you the evil eye for “taking advantage” because you have no outward physical ailment and of course, have no disability protection under the law, in the workplace or otherwise and risk being fired from your job, and become a huge burden on your friends and family, driving most of them away because you don’t have the ability to spend time with them or to do things for them (like clean your house).

Fibromyalgia literate doctors argue that despite popular beliefs that this illness “mimics” other illnesses – it really doesn’t. Sure, someone with fibromyalgia may also have symptoms that mimic IBS, Arthritis, Diabetes and other chronic illnesses, these conditions are often combined, with of course, intense tenderness, terrible pain, and fitful sleep.

So, I do find it kind of amusing when I read editorials on those fibromyalgia fakers who are feeding off the welfare system. To this day, I don’t think I’ve met a FM patient on welfare – although I would not begrudge anyone a few food stamps now and again.

There are about as many theories as to what causes fibromyalgia as there are medicines to manage the symptoms.

Most medical professionals agree that we have something going on in our heads. No, it isn’t depression, but a miscommunication of our neurotransmitters that say – hey, you are in pain.

Over a decade ago, I read a study that had to do with brain imaging for fibromyalgia patients. Though there was no explainable reason why, a fibromyalgia brain looks different than a non-fibromyalgia brain.

Back then, researchers suggested that fibromyalgia patients were not getting as much oxygen to the brain as normal, healthy patients.

Could this be the reason behind Fibro Fog? Is this why I am constantly tripping and dropping things and forgetting people’s names that I have known for years?

Recently, a new team of researchers have discovered that fibromyalgia patients do indeed have a reduction in brain grey matter intensity. In a nutshell, our grey matter is less dense than in healthy individuals.

However, the study was taken a step farther to determine what the effect of this loss is doing to us sufferers. What they concluded was that the reduced grey matter areas consist of dopamine creating areas of the brain. The part of your brain that makes your natural pain killers and balances pain signals.

Unfortunately, they do not know yet why we have a reduction of grey brain matter to begin with. However, this new study may just help determine what treatments can be used to manage (and perhaps one day cure?) fibromyalgia.

On my part, I already knew there was something wrong with my brain/body connection. But now that it is confirmed, I find myself asking a whole new set of questions, such as:

- Could this mean that fibromyalgia is progressive over time?

- Could this mean that there is a genetic component that we may pass on to our children?

- Will this additional physical evidence help or harm current fibromyalgia patients? For example, the study was conducted on only 30 women and 20 healthy women – is it possible that not all fibromyalgia sufferers have the same grey brain matter loss? Does that mean they don’t have fibromyalgia?

Have any interesting research or articles to share on fibromyalgia? Send them my way. In the meantime, stop that faking – don’t you know it is all in your head? LOL! :)

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Fibromyalgia and Economic Crisis

June 7, 2009 at 5:48 am (Uncategorized)

I haven’t written a post in awhile. However, a recent reader comment inspired me to keep writing. So here it goes. My first attempt in a few months. 

I’m sure all of you can relate to the economic crisis. It is hard for everyone – including those of us with chronic illnesses and limited job opportunities. 

With all the bad press about Fibromyalgia recently (including the recent license removal of a doctor who treated FM patients that died of medicine related deaths) – there is a huge impression in both the medical community and amongst passerby’s still that Fibromyalgia is the “Lazy Person” disease. 

If you have Fibromyalgia, the stereotype goes, you must really hate to work. Unfortunately, it doesn’t matter how much you explain or educate people about this disease. If they don’t have it – they don’t know how it feels to be so limited. 

Most people with Fibromyalgia work in some capacity. And for many, it isn’t because of the love of the job, we have to work to support our families, keep our insurance and pay our ever mounting medical bills.

A recent article on Forbes.com reports that 75% percent of ALL U.S. bankruptcies are due to medical bills and that 3/5 of those filing for bankruptcy are considered “middle-class.” 

Fibromaylgia is no expensive disease to seek treatment for. This alone should be enough for doctors and critics to think twice before judgement. There is certainly no proof that those seeking constant medical care are not just hypochondriacs looking for attention. But most of the suffers of Fibromyalgia that I know, work relentlessly to pay the medical bills they have wracked up because they are in constant pain and have constant fatigue. 

I don’t even know that hypochondriacs would continually seek help for constant pain at the price tag of over $3,000 a year in medical expenses, not including the prescriptions. 

And this of course, is if you have good insurance and if Fibromyalgia is the only thing wrong with you. 

Many people (including myself at times) have quit working altogether just to cut down on their medical expenses. Or, sometimes, I have found treatments that work well for me, but have hesitated to refill a prescription because of the $80.00 per month price tag. 

 Unfortunately, because Fibromyalgia has become known as this ambiguous and vague diagnosis – we do not yet have the ability to ask for accomodations at work, or even handicap stickers (what, so you can get even more fat and lazy? Asks doctors). 

 Sometimes, it can be a very self-defeating world out there. It is easy to throw a pity party for yourself when you are an upstanding citizen struggling with a chronic disease during an economic crisis. Can you – cards stacked against you? 

By all accounts I am an upstanding citizen. I vote. I pay my taxes. I take out my trash. I maintain my home. I pay my mortgage on time every month. I pay my medical bills and student loan bills. And my husband and I both work very hard and sometimes very long hours. 

So, it burns my cookies sometimes when doctors say I’m lazy and all my pain would go away with exercise, good food and weight loss. So, when I’ve lost weight, eaten healthier and exercise regularly, and doctors still give me the “you must be lazy” eye – I just feel exhausted. 

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But, not only do I need to work to support my family – I also love what I do. I have a passion for teaching college students and for writing. When I cannot physically work I am devastated. Sure, I also love being a stay at home mom, but working outside the home, even just part-time, creates a richness in my life that I would not have otherwise.  

To be healthy enough to work, I got aggressive about my medical care. I went to a pain clinic and they helped me tremendously! But first, I had to go through the gambit of MRI’s, X-Ray’s and exams. That is not of course, to mention the number of medications I took and what a trial and error that was. 

Now, I could work! I had some pain, but it was reduced. I still had fatigue but I have medication to help me sleep. All in all I had more “okay” days then “I’m going to die days.” 

But then there was the bad news – the piles and piles of medical bills. There were bills from my doctor, bigger bills from the pain clinic, radiologists, MRI technicians, the hospital bill (which is separate from the physicians bill) and of course, the lab bills. 

All of them came in separate envelopes, with separate account numbers and separate numbers to call (only between the hours of 9-5 of course!). 

I have never not paid a medical bill. But between setting up payment plans and trying to track them all (over $3,000 +), I started to lose track and my payments became late. Luckily, I was able to catch up, but not before realizing that I needed to make more money. 

What a catch 22. I didn’t work and went to the Dr.’s a lot BECAUSE of my Fibromyalgia. Now I was having to go to work and STOP seeing doctors because of my Fibromyalgia. 

Luckily, my doctors really have helped improve my pain levels. But that did not take care of those medical bills making a nice little pile on my husband’s computer desk. 

Would my husband pay my medical bills for me? Of course, over time, they would eventually get paid. But they are MY medical bills. My husband didn’t get Fibromyalgia. Ultimately, I didn’t want my husband to pay for my bills. 

So, in an effort to pay for my bills, my giant medical expenses and my student loans – I got a job. Wait: Several jobs. 

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I knew from a young age that working a full time job was not in the cards for me. It took all of my strength and effort just to finish my college degrees. Even then, I had semesters where I had to drop out, conduct independent study (because I couldn’t make it to class) or only take one or two classes at a time. 

I had worked full-time jobs as a teenager. At first, it was great! I loved the commraderie of the job and I genuinly love working with people. 

But as my days became longer, my pain increased. It got to the point that I could not longer stand on my feet for more than an hour or two hours at a time because I would be in such excruciating pain that I needed to clutch onto a counter to do my job. I would go to my car on breaks or sit in the break room and cry – often. 

So how was I ever going to make money? During college, I realized that part time positions and work from home would be my answer. 

Since that time, I have worked a maximum of 25 hours per week outside of the house and countless hours from home. 

With part time jobs (such as teaching) I can sit up, sit down, stand, take breaks and that is all considered okay. When I work from home, I can still work from my bed. 

So now, instead of having one full-time job, I have three small jobs. I teach college classes 4 evenings per week, I teach online and I have just been hired to work on a small project through my college. 

But in reality, what does this pay? With a husband who works full-time, my income is barely enough to pay for my monthly medical expenses. The rest of the money I earn goes towards my child’s care providers. 

If I was on my own, I would be one of those people filing for bankruptcy. 

Am I lazy? No. Do I work? Yes. But it would not be enough if I did not have another form of support.

 

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What makes me depressed? Doctors telling me I’m depressed!

February 11, 2009 at 11:09 pm (Uncategorized)
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So, I went to a dr. appointment today to discuss my ovarian cyst. The radiology report says I have a 2.5 cm cyst that has no free flowing fluid. This could mean that the cyst is a dermoid cyst, which is complex and sometimes doesn’t go away, but breaks off of my ovary (eww!) or it could be what I feared, a chocolate cyst, which is often related to endometriosis. 

I saw the physician assistant and let her know I was in pain (obviously) but more than that my thighs and legs were really cramping and feeling weak. She investigated a bit more and talked to me about my potassium intake and encouraged me to eat more bananas. Okay, no problem. 

But, despite the fact that the whole visit was quite pleasant, she still had to end on the note of “Do you go the therapy?” This is in response, I’m sure, to the fact that the last time I went to see my PCP I complained of fatigue. She said, well, do these blood tests and if they come back negative then it is probably depression. 

Okay. I’m not depressed. I don’t cry uncontrollably all the time (except maybe once in awhile when I’m PMsing-I’m honest people!), I look forward to getting out of bed in the morning and I have very limited stress in my life (except for stressed I CHOOSE, such as article deadlines, my Ph.D. application that I’m waiting to hear back on, and of course, my 19 month old son. Besides that I have a very stable home life and work life. I write when I want, I teach part-time college english whenever I am offered the chance, I even have a mother’s helper who watches my son 2-3 times per week for 2-3 hours per day while I rest, clean the house, write articles or just plain take a bath!

I told her I have tried therapy before, with limited results. After I had my son, I went through some post-partum depression and took Zoloft, which really helped. After about a year, I didn’t really need it anymore and felt great all on my own. However, once a depressed person, always a depressed person. 

Her solution to my leg cramps and weakness? It is probably part of your Fibromyalgia, you should try talking to it and saying, “Hey you, stop hurting me.” Are you kidding me? Instead I smiled and nodded. Any protestation at that point would have lead to a firm conclusion of my depressed “condition.” 

I can’t help thinking there is something wrong with a system that punishes patients for expressing their symptoms and a system of doctors who would rather put you on experimental anti-depressants instead of good old fashion pain killers with less side-effects. Every doctor has been handed the same manual. If you can’t find anything wrong with your patient it is depression. No wonder so many of us in the United States are on or have taken anti-depressants in their lifetime. 

I don’t blame big pharma as much as I blame the doctors that soak it in. I mean c’mon, we are all intelligent human beings with the ability to make up our own minds. 

So that is my “rant” for the day. When I feel my lowest – it is usually after a doctors appointment where my primary care physician has implied, stated, or tried to force me into a depressed diagnosis. 

The weird thing was that after my son was born, I had to go to my doctors and ASK specifically for anti-depressants and let them know I was depressed. There was no follow up or screening. But now that my son is older and I’m feeling great and ready to be a productive citizen, every complaint is “depression.” How about a little encouragement, understanding and compassion for a change? 

Thanks.

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