Overextending

The end of this week has been a little busy for me. It's a long story, which many of my readers already know, but a pit bull mix pup found its way into our garage, and now we're trying to find someone (home or a shelter) to rescue her from the pound before she meets their time line max for holding pits. I am sure, because of her breed, that she doesn't have as much time with them as other dogs, so I've been doing what I can to reach out to the different rescues. But that's only part of what this is about. I mention it because it is part of what I was doing yesterday.

We had quite a list of things to do, and I was feeling really good, so I was up early to get started. After breakfast, I emptied the dish machine, reloaded, and cleaned the sink. I have an older cat, a male Maine Coon named Jobie, who needs to be bathed regularly because of his medical problems, and I needed to get him cleaned up before taking him in for his regularly scheduled lab work. He got his bath in the freshly cleaned sink, which I of course, cleaned again when we were finished.

My husband and I then headed off to the grocery store for a few things, came home, put them up, then took the cat to the vet. We waited to hear about his thyroid levels, which turned out to be on the high end of normal. We took him home, then headed out for lunch and to shop for a Bunco gift for Monday night. When we got home, I wrapped the gift and pulled meat out to defrost for cooking this evening. That may have to wait for my husband to do tomorrow, because it's still not defrosted.

I spent some time online trying to contact different rescues about the dog I mentioned above, even speaking with one of them over the phone at length. I also spent quite a bit of time on the phone with our vet, when she called to discuss the results of the lab work and the future course of treatment for this cat, as well as how to discourage and eliminate some bad behaviors he has developed. By now it was dinner time, and I was a bit tired, so my husband went out and picked up dinner from a place we like to go when we are in the mood to get out of the house. Since I've been on a diet for some time, we made sure I had a healthy, low calorie selection. It was filling enough that I put some away to eat today. At the end of the evening, I went to bed feeling good and planning to take care of some things today, that I just didn't have time for yesterday.

Today, the alarm went off at 6 am, as usual to help me get up and ready for church. I was having trouble waking up, so I allowed myself another 30 minutes to try to sleep off the tired, and added another 30 when I realized that church service was scheduled to be later than normal. When my timer went off, I still was having trouble waking up, and fell asleep again as I was trying to get up! Twenty five minutes later, I woke up on my own, but still felt very fatigued. I forced myself to get up, and went into the kitchen to make breakfast. I barely got my own breakfast together, and was cleaning up from eating it, when my husband came in the kitchen, and announced he didn't want to go to church because he was still recovering from some medical problems of his own that he had to deal with the day before. Have I mentioned that he has Crohn's Disease and is in stage 5 renal failure from lifelong kidney problems?

I was doubting my ability to get ready in time anyway, so he got no argument from me. At least I was able to do my daily bible reading.

I went to the computer to work on more contacts for the dog, but just couldn't seem to get started. I just sort of stared at the list of web addresses in front of me, and realized I couldn't think straight. Instead, I started playing a game to try to get the cobwebs out of my brain and get ready to work. Not happening, even after an hour. I realized it was because I was still tired, so I went to take a nap. Yes, more sleep. I woke up again about an hour and a half later, got up and shook off the cobwebs slowly. By then my husband had got ready for work, and left for his day at 1pm. I realized later that it had been 5 hours since I had eaten, so I warmed up my leftovers and ate. It is now after 2pm, and nothing I had planned to do for today has been done.

Some of you may think I'm wasting time or procrastinating by taking the time to write about this, but I felt it would be important to share just how the fatigue, which I believe is from the fibromyalgia, can hit someone suffering from the condition. It's not that I don't want to do more today, it's that I can't seem to get myself going to do the things I want to do. It's hard to describe just how this feeling stops you from doing even those things considered to be simple tasks. Writing is not normally a difficult thing for me, so I can struggle with the feeling long enough to get a single blog post done.

And now, I'm off to take some medicine, as my neck, left shoulder and elbow are starting to complain at me, and I want to be ready for a phone call I'm expecting this afternoon.

Migraine, Day Three. Or Is It Four?

Tuesday morning this week, I woke up with a migraine. Not a bad one, but it was definitely migraine pain. I decided to go to work anyway, because I had a migraine the previous Tuesday, and I don't like to take more than one day off per month for these kinds of things. I work in an office where office politics go wrong a lot, and this Tuesday was one of those kind of days. I don't normally pay attention to it, but when a supervisor confronted me and a coworker of mine, who were minding our own business and not doing anything wrong, I got a bit upset and stewed. By the end of the day, I was struggling to finish the day.

After work, I had to pick up dinner since nothing was defrosted in the house. By the time I got home, I was so glad for the day to be over! I took my prescription medicine, ate dinner, spoke briefly with family over the internet and went to bed early. When I have a bad migraine, I usually sleep with a ski cap on my head because my head actually feels cold, and ice on my neck to numb the pain so that I can sleep. This is because the medicine sometimes doesn't do a good enough job. When my migraine is really bad, I sleep on the sofa because I can't get comfortable in the bed. This is how I slept that night.

Wednesday came, and while now the pain seemed to be gone, I was really groggy from the medicine. I struggled with myself and went to work anyway, and once the medicine wore off, the pain was back. I kept debating whether I should just go home and rest, but I kept wanting to get "one more claim" paid, because that's one more person with money in their pocket. I stayed the day, and while I masked it with a smile, I was absolutely miserable at quitting time. My husband is home in the evenings on Wednesdays and Thursdays, so he was going to pick up dinner, but I had to go get gas in my car. I sped home from there, because I just wanted to get to bed. I was able to eat, so I had dinner after changing my clothes. I again chatted with family about some things, and went to bed (or should I say, sofa) early again, after taking another pill.

Thursday, wee hours of the morning. The ice pack had melted and the medicine worn off. I tossed and turned, finally got comfortable and fell asleep. When my alarm went off, the pain was definitely back, and I decided I'd had it. I called one of my carpool buddies, left her a message and went back to sleep. I called work once the office opened, and reported in as sick. The plan: Call the chiropractor and make an appointment, in the hopes that maybe it's because something moved in my neck again.

I managed to get to the chiropractor in the late afternoon, and he adjusted me thoroughly, and ordered traction table with ice for my neck. In speaking with him about what had gone on for me in the last two weeks, he reassured me that it was primarily not the FM that had caused so much ongoing pain. He agreed it was a factor, but stressed that it was more likely my pain started because the tissues in my neck had become inflamed from the weird, hot-then-cold-then-hot weather we had for the last month. I felt so much better after my treatment that, with doctor's approval, I did all that was planned for the evening, including prepping a salad for an office luncheon, going to dinner with friends and playing miniature golf with the group afterward.

I was refreshed and enjoying the freedom from pain. Sadly, I woke with the alarm and found myself in pain again. I realized that I had been laying on my left side, and it seemed that some of the pain dissipated slightly when I rolled to the right. It dawned on me then, that I am aggravating my problem whenever I sleep on the left side. I am now determined to stay off that side, no matter what. In the meantime, I knew I would have to take a pill to be able to get to work.

My husband had picked up a refill of my migraine medicine, and this time the pharmacy had filled with the generic version of the medicine. It had no coating, and the moment it hit my mouth, I was enveloped in the bitter taste of a rapidly dissolving pill. I hadn't even had time to get the glass of water to my lips before there was nothing but bitter grains throughout my mouth. BLECH! GAH! EW! While this was an ordeal, I did find a positive side; the pain had melted away within a matter of minutes, almost as quickly as the pill had dissolved in my mouth. Then there was the side effect. I felt like I was high. I tried to cover it up, and foolishly chose to take my turn driving for the carpool, in an effort to hide the fact that I was having an unpleasant experience. I did admit to one person that I felt overmedicated, which I had admitted to before without anyone batting an eyebrow, but she immediately asked me if I was okay to drive. I tried to convey confidence, but agreed to pull over if my driving skills proved to be less than adequate, and let her take the wheel. Fortunately, I got us to work safely.

My feeling of intoxication wore off as the day progressed, and now I am sitting somewhat comfortably in front of my computer, documenting this latest experience to share with all who care to read. I am feeling some pain, but it's not at a level that would escalate into something worse, or require me to take any medicine. I am grateful to be where I am at, and I hope this is the worst I feel for the rest of the weekend. Here's to not having a "Day Five."

P.S. - I started this blog on Thursday, expecting to have it finished the same day. Because of the way Blogger works, the date is Thursday's date, because I drafted it in the blogger editor. However, today is actually Friday, the 30th.

From Ignorance to Understanding

It has been a while since my last blog entry, so I thought it was time to touch base again. I've decided to start this off with the history of my "evolution of understanding" of FM.

When I first heard, in the course of my work, there was a disorder by the name fibromyalgia, I had no clue about what it was or how severe it could be. By the sound of the name, I concluded it probably had something to do with muscle or nerve fibers, and some form of pain. I did not know what the source or cause of the pain could be, or what body parts were affected.

Any time we have doctors providing a new diagnosis that we are not familiar with and cannot get info about through our own resources, we generally tend to send people to doctors our agency pays for, to get a second opinion and get more information about the disease. When that was the case for this disorder, I sent a few patients to doctors for additional information. In some cases, the doctors felt there was no reason the patient could not work, while in others, the doctors felt the patient needed much more time off and should be evaluated for what they believed would be a more definitive diagnosis. I believe they were looking for traditional diagnoses like lupus, osteoarthritis, rheumatoid arthritis, or something similar to these, since so many symptoms of fibromyalgia mimic these conditions.

In one instance, I happened to speak with one of the doctors we use. He described fibromyalgia as, in his opinion, a psychosomatic "designer diagnosis" in which the patient would benefit much more from psychiatric care than treatment with an internist. At the time, not knowing much at all about the disorder, I accepted his evaluation almost as gospel, and began viewing claims with this diagnosis with a more critical eye. I wanted to send these patients to psychiatric evaluations, based on what that doctor told me, but the rules state we can only send them to the type of doctor that would normally treat the defined illness or injury, which was always either an internist or rheumatologist.

Not realizing I was already showing signs of this very illness, I began to believe that these patients were either faking or manifesting symptoms due to some deep-seeded emotional issues they weren't dealing with. It took several years for this opinion to change, through training and resource updates, along with what I learned through personal interviews with affected patients. I eventually came to realize how seriously this condition affects people, and noted (as found in my research once I was diagnosed) that it affects women more often than men.

After realizing that FM was a definite, often debilitating, genuine diagnosis, but before knowing I had it, I met a lady at the church we attended who has it. I was cautioned not to hug her too tight, as she is often in a lot of pain. I later met another woman with it, when I began participating in a monthly game with some ladies in the community. Then a woman transferred to our office who had been diagnosed with it as well, and I started to see the daily struggles of a fibromyalgia sufferer. I really felt for her, because I could see her struggling to continue to work a regular schedule, but often being struck down either by the associated depression or just debilitating pain that would not allow her to continue to work during the course of a day. She became one of my primary resources when I began to research after my initial diagnosis, and shared with me that yet another woman I already knew, who worked as a manager in another office, also has FM. I have been amazed at the number of people I am acquainted with or know, who have this condition besides myself.


Me and my coworker/co-sufferer.

In speaking with my coworker, I came to find that her path to understanding the disorder was not much different than my own. In fact, we joked about "payback," finding humor in the somberness of our condition. She shared with me some of the odd symptoms she had had early on, and how, like me, she didn't think her symptoms lined up well enough for it to be FM, but later found they were just early signs of the disease, which now is quite evident to her. We have in common that we denied having this condition initially, and later had to face facts about it being a part of our lives. She has even shared with me a bit of the history of her going through the rule-out phase, which was a bit different than mine because she gets her care through a medical group, while my care is through a private practice doctor. Each has a different method of doing what results in the same thing; evaluation, diagnosis, treatment.

I have also spoken with the lady in the group I participate with for a monthly get-together, in which we play a game (Bunco, sort of like Yahtzee but not). She has shared of some others she knows with FM and are in much worse shape than we are, and the stories she shared quite honestly, have made me very nervous. I have tried to speak with my church friend about it, but she seems to be reluctant, most likely because many of us find ourselves becoming unreasonably depressed when the realization comes across us about how much worse things could get or have become. To explain; one of the clients who I have encountered recently, appears to be close to the point of being permanently disabled from working due to the severity of her pain. She has to take narcotics to dull the pain, and is still so miserable it is hard for her to get out of bed. It is a horrifying thought to think that I might end up in just as much pain, if the symptoms progress.

Finally, I am realizing how widespread FM is, because even since becoming a member of a social networking site, I have encountered several women who have it, at varying degrees. I have been hoping that I would meet more through my blog, but so far no one has come forward to comment about their own condition and share how it has affected them.

Many of my posts to now have been going over things from a historical perspective, to explain how I came to determine my topic for a blog of any kind and why I believe I should write this blog. From this point on, I expect my posts to be about what I experience as a result of having this, including symptoms, nuggets of wisdom through self-education, and interaction with others in the FM community. If you feel you have something to contribute to discussions on this topic, or even simple words of encouragement, by all means please leave a comment below. Feedback is most definitely welcome!

Case History(?)

I decided it would be a good idea to provide a list of the different complaints I have had throughout the years, that are or could be symptoms associated with fibromyalgia.

Over the years, from childhood to now, I have been involved in a few auto collisions (obviously, not always as the driver). In those, there have been several times where my head, neck and back have been injured. Of course as a child and a youth, I had my share of other bumps and thumps and wounds, but what is pertinent to my case history is that there was at least one trauma in my life that caused a serious injury. I mention this because most people with fibromyalgia have had at least one serious physical trauma to their bodies before the syndrome began to manifest.

As a teen, I became plagued with a chronic fatigue and recurrence of illnesses similar to the flu, in one instance having a flu virus that was serious enough to keep me home from school the entire week. Before I reached my 18th birthday, I was being tested for anemia, which was the only explanation my doctor had for my lack of energy and developing stomach problems. I was diagnosed with a nervous stomach, a precursor to an ulcer, and advised to avoid any food or drink that would trigger a flare up. It took some time for me to realize that coffee was a major trigger, because it took several minutes after consumption to have a flare.

When I hit puberty, I wished I hadn't, because it hit back pretty hard. I would have cramps that would double me over in pain early on, and they never seemed to ease up unless I had a heating pad over my abdomen and was loaded up on aspirin, acetaminophen or ibuprofen. When I started working, there were days when it was so painful I would have to call in sick.

In high school, I developed a strange pain in my jaw that would stop me in my tracks whenever it came on me. The best way I have to describe it is that it feels like someone taking the sharpest needle they can find, and pushing it through the bend in my lower jaw, trying to come up from the lower, outside portion into the center of the top of the bend. I was told when my son was young that it was temporal mandibular joint syndrome (TMJ). I recently had a major flare of attacks that went on for weeks, having several every day that would last for a few minutes at each onset. It also seems to come on me more when I have incidents of jaw popping (the joint popping in and out of place), especially if my muscles are tense and I need to open the jaw a bit wider than the muscles want to let it.

I also had trouble from my youth on, with chronic migraines that seemed to just get worse as I got older. Stress aggravated the frequency and intensity, to the point where I would be praying for mercy if I had got to the point of losing my composure, because if a migraine was setting in, the emotional outburst seemed to multiply the intensity by the largest margin. At one point in my life, I was losing at least three days from work per month, due to the horrific pain.

In addition to losing time from work for the migraines and occasionally due to my cycle, I began having muscle spasms in my back. They started shortly after a fender bender in which I was rear ended. Sometimes my muscles would contract in my sleep, and the intense pain would wake me up writhing. Nothing would help alleviate the pain, no matter how many pain pills I took (even when I got a prescription from the doctor), and no position would grant any kind of relief, until the spasm subsided on its own. My husband wanted me to go to a chiropractor, but I was reluctant to because at the time, chiropractors were not considered the best in the medical field to seek care from. When my insurance decided they were good enough to allow coverage under, I decided it was at least worth a try and ended up consulting with one who happened to attend our church.

The chiropractic care has helped tremendously over the years, and soon after beginning treatment with my first chiropractor, I stopped having the late night spasms. Even so, I continued to have the other problems mentioned above, and have continued to develop even more problems since; numbness and tingling that run down my left arm all the way to my pinkie and ring finger after going through my elbow, more rarely down my right arm, plantar fasciitis (inflammation of the plantar tendon in the foot), "ghost" bruising (you feel like you have a bruise somewhere, or all over, yet there is no discoloration and you don't remember any kind of impact that would cause it), sharp pains and sometimes tingling pain on the outside edges of the feet, knee pain, and ankle pain. My most recent development which, in fact, just started happening yesterday, is a pain in the upper portion of the ear, which feels sort of like the ghost bruising but not quite the same; it's almost like the inside of the curl of the ear at the top was scraped. The plantar problem is about the only thing that has a real explanation for it, so is most likely not part of this syndrome, but I list it in case other sufferers have ever had this problem as well.

If any of this sounds like you, I would recommend you speak with your own doctor about doing the latest evaluation to determine if you may have this syndrome. If this sounds like anyone you know (particularly the pain symptoms), recommend they see a doctor for evaluation. In its own way, knowing what you have, even if nothing can be done for it, is a relief.

Countdown to "D" Day

I suppose it might be a good idea to give some background on how I came to be diagnosed. A few years ago, we started having a little trouble with our doctor's office. The doctor was (and still is) great, but her staff was a bit, well, clueless. I deal with doctor's offices on a daily basis, so I know a bit about which ones have their act together on different things. Hers didn't, and with every staff change, seemed to get worse. Roughly one year later, she became less and less available, and the corporation that ran the doctor's office brought in a guy who looked like he came out of retirement to rejoin the medical field, to help out. Believe me when I tell you, he wasn't much help.

About this time, my husband ended up in the hospital and another doctor checked up on him while we were there. Our frustrations with our doctor's unavailability and her staff's apparent lack of competence were already causing us to consider finding a new doctor, but we hadn't actually decided to do so. Jim decided to approach this doctor about the possibility of taking us on as patients, and his reply was twofold: First, he normally handles geriatric patients and patients with serious, chronic medical conditions (like Jim's); and second, when he found out who our current doctor was, he was reluctant to agree because the other doctor is a good friend of his, and taking us on when we were her established patients created a moral dilemma for him that he did not want to deal with.

Before making the final decision to definitely look for a new doctor, we took the opportunity of speaking with the doctor we had had since moving to this city (up to that point, we had lived here 8 years). When we mentioned our concerns, she admitted that she had been frustrated about her staff situation as well, but she tried to avoid the question about her availability until we pressed her, and she finally admitted that she was leaving this practice to open her own in another city, a bit too far away from us for us to remain her patients. It was then that we felt free to find a new doctor.

Unfortunately for me, this would be easier said than done. Jim went straight to our old doctor's friend and colleague, while I began to search for a doctor who would be comfortable treating me, since I was neither geriatric nor did I have, to my knowledge, any serious conditions. I checked out a doctor who sounded perfect, and happened to be within walking distance of our home, only to discover that he also runs the local urgent care out of his office. Making an appointment with him would not guarantee I would be seen as scheduled, because he would have to take urgent cases above scheduled appointments. I found that there were problems at almost every office I looked into, that would not allow me to make any of them my location of choice for primary care. Because of this, I reluctantly called my husband's new doctor for an appointment.

While waiting in the office for my first appointment eight months ago, I was required to complete an intake form that asked a LOT of detailed questions about my health, so I listed all the aches, pains and symptoms I had had for some time, but hadn't really detailed to my prior doctor. I noted family history and personal history, and the new doctor reviewed each of these and discussed all the nuances of each complaint along with a bit of in-depth on the history, before beginning his medical examination. He also asked about sleeping habits (hours per night), then started checking several points on my body for my response to normal pressure applied at those points, as I discussed in my first blog. These points are known as "trigger points."

This is when the doctor made his initial, tentative diagnosis, explaining that bloodwork would have to be done to rule out other conditions, and explaining why he was looking in this direction: My sleep habits were poor (they still are, but not as bad, and not for lack of trying to improve things), and I have a history of physical trauma to the body (actually more than one for me, over the course of my lifetime). I also have symptoms of atypical depression, which is apparently another indicator, when evidenced in conjunction with the other factors he was finding in me. While these are not the only factors to look at in diagnosing fibromyalgia, They are, apparently, a few of the biggies.

After all the tests are done, everything else it could be has been ruled out. The doctor is encouraging, saying it is actually good news because this is a condition that should not prevent me from doing most things, although I may have to make a few minor adjustments in my life to avoid flareups. I have to admit, even though the doctor is speaking positively about this, I almost feel like I've been sucker-punched, considering what I knew about it before, plus what I've been learning lately. Having done some research while waiting for the tests to be completed, I am surprised to find that there are many things about me that pointed to this before now. I'll talk about them a bit another time.

Just A Little Out of Sorts

So I'm at the doctor's office in October 2009, seeing my new doctor for the first time, and going over my medical history. I describe how I have noticed that lately I have been getting depressed about little things that didn't used to bother me. I also describe to him my general fatigue and how I can occasionally feel disinterested in things. I add descriptions of my different little aches and pains (migraines, chronic neck problems, chronic back pains), so he begins a physical exam that includes pressing on different joints. He asks if it hurts, and at first I say "no," because to say that slight twinge of pain 'hurts' feels like it would be lying. Then he touches my left knee. "OW." He looks at me again with concern, then starts the pressing over again; "does this hurt, even just a little bit?" This time I am more honest with him and myself; yes, it hurts. But hardly at all, except for that knee.

At this point, the doctor tells me his initial diagnosis, which quite literally took my breath away: Fibromyalgia. He ordered several blood tests because, as he put it, this is a diagnosis of exclusion, meaning he would have to rule pretty much everything else out in order to say for certain whether this was or wasn't what I have. Everything else came up negative, so there is no longer any doubt.

Allow me to give you a bit of my background: I am a female, in my late forties, and I work in a government office that pays insurance benefits to folks who are disabled, usually for only a short period of time. I have been doing this particular job for about 21 years, but I started working for the government 31 years ago. For the first six years of my son's life, I was a single mother, but for nearly twenty years I have been happily married to the man my son now calls "Pop" and "Dad."

I have been noticing for the past few years how it has become increasingly difficult to do many things I enjoy, along with doing things that really need to get done around the house. Originally, I didn't think anything of it, because I presumed it was just part of the aging process. Then I started realizing that many women who were older than me, were running circles around me in these areas, including my own mother, who is currently in her eighties. When she visited from out of state, I thought the reason I was getting so worn out was because I was exhausted from trying to get everything 'just right' before she arrived, and that I hadn't given myself an opportunity to relax. I remember wondering how she does it, the day she dragged me out to my yard to help me clean it up (on her vacation), and when we ran out of daylight, she insisted on baking cookies for my husband and my son, involving me in the process. She could have gone on all night, but before the first batch went into the oven, I was ready to fall into bed and rest my tired body. The next day, I took a handful of ibuprofen and steeled myself for all that I knew she would want to do. I was more tired when she left, than when she first got here.

When the doctor first uttered that 'F' word, I hesitantly looked for information in the resource material they provide at my job, as well as trying to find places to go online that would help me understand the disorder. I also started talking with a coworker who has been diagnosed with the same disorder. I thought at first that my symptoms didn't match up, until I had a lengthy conversation with my coworker about it. What she described to me about how this affected her early on, and even now, lines up almost exactly with what I've been experiencing. Now that I have started to come to terms with this diagnosis, I have decided to make an effort to try to share my thoughts and experiences about this with all of you through this blog, hoping that this form of 'self-therapy' will also benefit others who are coming to terms with the same diagnosis, or suffer from any type of chronic pain. I plan to describe my journey in a bit more detail in my future blogs, in the hope that this will be as helpful for you as I intend.

Thanks for riding along.