"I only get one life and I will not let Fibromyalgia take the joy from my living it."

Friday, February 19, 2010

Fall '09

The following is a previous post from Fall '09:

Ok, I've had these results to my blood test for a few days and just haven't taken the time to post them. I was in for my normal visit to renew scripts and stuff. But I needed to talk to the doc about my feet hurting. My feet have been hurting sometimes enough to keep me from walking. It's just part of Fibro that when you get up in the morning your feet hurt and are stiff. But after a few minutes of walking around, or waddling around, they are better. But lately they were getting worse. I would wake up in the morning and while still lying in bed my feet would hurt so bad the thought of getting up was painful. Sometimes the pain would radiate up into my legs. I bought a couple pair of insoles for shoes. But being the girl that I am, my shoes fit. You know, pretty girl shoes don't have room for big insoles. But I could fit them into my cowboy boots and my rain boots. Well, you know it was raining forever. Almost enough to keep me wearing the boots with insoles so long that my feet starting getting better. So it was a healing rain. But just in case the doctor ran some blood work to make sure that it was just Fibromyalgia. As always, if I give blood (or rather if they take it from me, I never just give it) my renal function is tested. My kidneys are working in the normal range. So that's good. Also a good is that I am no longer anemic, thanks to some strong vitamins and pounds of spinach consumed every week. He asked if I know what B12 deficiency is. I said "no, but I heard it on House and it sounded really bad." Joy, I do not have B12 deficiency. I do not have diabetes, lupus, thyroid problems or anything else wrong with me. There were other things listed on the sheet but I forget. My blood pressure and cholesterol are fine. While there he also checked for Plantar Fasciitis and neuropathy. Both negative. Lately, the pain has not been as bad. And you will all be glad to know that I have since bought two cute pair of flats in a half size bigger and put in insoles.

Summer '09

The following is a previous post from early summer '09:

Just before I was diagnosed I had gotten bad enough that I could not take care of myself. I could barely get down the hall to open the door for the dog. I had to resort to help from friends and my mom. God bless them! Now, even on my bad days I am functional. I still have bad days. But it's hard to call them bad days because they're really just not so good days. And I've learn to prevent the worst of days. I think I am doing really well. I was hoping that the medicine for Fibromyalgia would help with my reaction to the summer heat, but no such luck. I still get migraines from the heat. And it doesn't take long. I could just run to the store or check the mail and pretty soon I'll be sick. So Brodie and I have worked out a schedule that helps us both. I try to do my chores and errands early in the morning or late at night. Brodie does two mornings a week at daycare so he is not bouncing off the walls. He still pesters me to go out and play fetch in the afternoon which I just can't do. The only way to keep him from pestering me is to let him take a nap with me on the bed. So that's our game plan for the summer. Early morning we do housework or whatever, nap in the afternoon and then more work in the evenings. I of course and staying up later than I am used to but it's not hurting me so much since I have the nap. A lot of times by nap time I've got a migraine coming but am able to sleep it off and keep going. And Brodie gets the rest that he needs. I actually have been getting quite a lot accomplished and have time for extra projects so it's working out pretty well. Basically I just hide from the heat and sun. But every day feels like two days, it's weird. Brodie and I are both excited about our newest toy. It is a glow-in-the-dark ball made by Chuck-it so it fits in our ball launcher. This way we can play in the evenings when it's cooler. Yay!

My Diagnosis

To help you get acquainted with me, the following is a previous post on my personal blog from about a year ago:

I was recently diagnosed with Fibromyalgia. Everyone wants to know what that is. I hope this helps. It's going to start out technical, but hang in there, it will get personal. Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities. Although chronic, widespread body pain is the primary symptom of fibromyalgia, a variety of other symptoms are common in FM patients. Symptoms include: moderate to severe fatigue, sleep disorders, problems with cognitive functioning, IBS, headaches and migraines, anxiety and depression, and environmental sensitivities. Recent studies have suggested that FM patients have generalized disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals. Fibromyalgia often occurs following a physical trauma, such as an acute illness or injury, which may act as a “trigger” in the development of the disorder. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. What does that mean? The thingies in the brain that send the signals to the rest of the body have been injured. They are misfiring or over firing sending pain signals and confusion to the body. So what does my Fibro look like? A lot of people with FM say that they know when it was triggered. . . they fell or were in a car wreck. I can't pinpoint it. For me it seemed to come on slowly over the years. Although I now know that I have an old whiplash injury. I wonder if they are connected. I have been experiencing pain in the muscles and joints for a couple of years now. Sometimes the pain would radiate from the joints into my bones. Sometimes the pain was between the muscle and bone almost as if it was the connective tissue that hurt. Usually it was the worst at night. Everywhere that my body was in contact with the mattress would hurt. I would have to turn over every two minutes trying to relieve the pain. I have fatigue and muscle weakness. FM is often misdiagnosed as chronic fatigue. Some of you may remember that I have suffered for about 9 years with extreme sensitivity to light, sound and smells triggering migraines, vertigo and nausea. Evidently that is related to this as well. I also have "fibro-fog" which is a physical symptom of FM that can cause mental confusion, fuzzy thinking, short-term memory loss, inability to concentrate or pay attention, and language lapses. If you know me well, you know I have all of those. LOL Experts seem to agree that sleep deprivation is the primary culprit of fibro fog. Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency. My Diagnosis: Two years ago, during an episode & LOTS of tests, the doctor said that I may have Fibromyalgia. There is no test for FM, to date. You only test negative for everything else. He said he could send me to a rheumatologist who would do the same tests and then diagnose me. At the time there was not a lot they could do for FM patients. They give you pain pills. I figured, why get diagnosed with something they can't do anything for. What if we have to change insurance? This fall when I went in with my worst episode yet, he said that a lot had changed in FM treatment. He explained what was believed to be the cause. Then he told me about two medications that actually treat the disorder, not just pain medicine. What medication am I taking? The first medication that I was prescribed is Lyrica. Lyrica, which is a seizure medication, inhibits those hyperactive signals in the brain. It calms them down just like in the prevention of seizures. The second medication I was given is Cymbalta, which is generally an antidepressant that is also used to manage pain, which is how it is used for treating FM. I asked the doctor why, if the problem is in the signals and the Lyrica is supposed to fix that, do I need to take the Cymbalta for pain. He said that some pain we have had so long that it has left an imprint on our brain. The Lyrica can't help that pain, but the Cymbalta can and has for me. Taking these two prescriptions combined has made a world of difference for me. A month ago I thought "It's like I'm normal." But I'm not. I've learned that if I overexert myself, which is easy to do, I seem to have more problems with everything. Unfortunately, taking the medicine has a price, besides monetary. Both these medications cause weight gain. And I have. But usually when you gain weight you feel worse. I am feeling better even though I'm gaining weight. Hopefully the weight gain will stop soon as it is very discouraging. I also take Melatonin, a natural sleep supplement. What does this all mean for my work? I work in childcare. For seven years I have been caring for babies 6-12 months old. I was having too much back pain and lots of shoulder pains. I was reassigned to work with the babies birth to 6 months. That has helped me a lot since there can be a huge difference in their weights. So for now I can continue to work, although for next year I have just signed up for Tuesday and Thursday instead of Tuesday, Wednesday and Thursday. This will give me a day in between to rest and recover physically if needed. What is my course of action? I'm under the care of my physician, going to the chiropractor, taking my medicine, doing water aerobics, occasionally massage therapy, trying to pace myself physically and keep stress levels low. I know this is all a lot of information. But this is my what my fibro looks like and how it's being treated.


Dear Diary,

I have Fibromyalgia. Do you know what that is? Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. It is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. At least that's what the experts say. But Fibro is different for everyone. I've joined several Fibromyalgia groups on Facebook looking for a place to share and learn, but what I've found is a lot of complaining. There is a lot of negativity. I know we are all hurting and every day is hard. But negative energy only makes it worse. What I want is a place to ask questions, get opinions and answers. I want to be part of a group that shares this together, but with a positive outlook. Let's learn how to live with this, survive it, be cured from it. I only get one life and I will not let Fibromyalgia take the joy from my living it.