Okay, so Gerard Butler screaming "This is Sparta!" in 300 was way cooler and he's infinitely hotter than I am.
I was officially diagnosed with Fibromyalgia (read that with a deep booming voice that echoes) on June 28th. There are so many things going on with it that I didn't realize were fibro related till the doctor said I had it. So, I thought I'd post this blog about what goes on in my body with the Fibromyalgia (remember, deep booming voice that echoes).
Typically, I hurt all over. My muscles ache. For a while, I thought that the muscle pain was related to my joint pain. I have arthritis in my knee- notice that's singular, because I have a bionic knee on the other side- and my wrists and hands. I thought that the pain in my muscles was just radiating from the joints, so I didn't think the two were separate. So, every single moment of every single day, I feel as if I've got the early stages of flu. Achy and slightly hot to the touch. That's a good day.
I wake up exhausted, no matter how much I sleep. (we thought that was a thyroid disorder symptom, but it wasn't this time). I used to be one of those annoying people who was up and energetic no matter what time of day it was (I used to work the night shift). Now I wake up and barely have the strength to drag myself upright and out of bed. But I do, because I got shit to do and that shit ain't going to do itself.
On bad days, I hurt so severely it brings tears to my eyes. Every muscle hurts, every hair on my body makes the skin its attached to ache. It hurts to move, it hurts to be still, it hurts to breathe. And those are the days I don't want to get out of bed. I just want to lie there in whatever position I woke up in and not move.
I have in-between days too. The days that aren't as severe as those bad days and yet they're worse than the good days. Today is one of those days. My clothes touching my skin make me cringe today. My skin is achy. Even the water in the shower made my skin hurt. I used to make fun of those old ladies who wore those big, loose muumuu dresses, sometimes those are called caftans. But I'm guessing those women had the same problem. I've considered finding myself a circus tent to use as a muumuu. As it is, I keep wearing the same stuff over and over because I know its comfortable. I'm wearing jeans two sizes too big and a cotton spaghetti-strapped tank top. I wear huge underwear now too. No more is there anything sexy about my undergarments. If it starts raining, I could take these things off and we could all take shelter beneath them. That's how big they are. I also started buying bras for comfort. I have two now that I never would have worn. They're soft and satin-y and don't look too bad. So at least my bras have some pretty to them.
On those really rough days, I take Vicodin like Doctor House is possessing me. Hang on, I got a bit sidetracked by the thought of being possessed by House. Mmmm... Hugh Laurie...
Okay, where was I? Oh, yes, the Vicodin. I have gotten to where I take three at night and if I absolutely need to, I will take two in the day time. But, I don't like to do that unless I'm going to the store or something else that requires walking. When I went to my fibro diagnosis appointment, I didn't take any pain meds. I had to walk from one end of the VA hospital to the other, then back again and then take the elevator up to the sixth floor where I walked some more. By the time I got to the nurse's triage area, my pain was bordering on a 9 of that 1-to-10 pain scale. By the way, that pain scale is infinitely flawed. Allie Brosh of "Hyperbole and a Half" fame says it so much better.
The doctor prescribed Cyclobenzaprine for me. Its a muscle relaxer, the generic form of Flexeril. I've been on it less than a week. Its supposed to help me sleep. I can say with certainty that it does indeed. The first night I took it, I did so at 6 PM, with my Vicodin. I was in bed and asleep by 730 PM. I was also awake and alert at 230 AM (I normally get up at 4 AM). Now I take it around 730 PM so I can go to bed at a normal hour. But, some mornings, I wake up so exhausted that I can barely stand up. Other mornings, I wake up alert, but sore. If I don't leave the house, I don't worry too much about how much I hurt- unless its a bad day, then I pop two Vicodin just to get through my day. I have to say, as hard as it was to get the Vicodin from the VA doctors, they've been fantastic about upping my dosage as I've needed it.
Below is a list of things that Fibromyalgia (booming, echoing) can cause. From this website.
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I was officially diagnosed with Fibromyalgia (read that with a deep booming voice that echoes) on June 28th. There are so many things going on with it that I didn't realize were fibro related till the doctor said I had it. So, I thought I'd post this blog about what goes on in my body with the Fibromyalgia (remember, deep booming voice that echoes).
Typically, I hurt all over. My muscles ache. For a while, I thought that the muscle pain was related to my joint pain. I have arthritis in my knee- notice that's singular, because I have a bionic knee on the other side- and my wrists and hands. I thought that the pain in my muscles was just radiating from the joints, so I didn't think the two were separate. So, every single moment of every single day, I feel as if I've got the early stages of flu. Achy and slightly hot to the touch. That's a good day.
I wake up exhausted, no matter how much I sleep. (we thought that was a thyroid disorder symptom, but it wasn't this time). I used to be one of those annoying people who was up and energetic no matter what time of day it was (I used to work the night shift). Now I wake up and barely have the strength to drag myself upright and out of bed. But I do, because I got shit to do and that shit ain't going to do itself.
On bad days, I hurt so severely it brings tears to my eyes. Every muscle hurts, every hair on my body makes the skin its attached to ache. It hurts to move, it hurts to be still, it hurts to breathe. And those are the days I don't want to get out of bed. I just want to lie there in whatever position I woke up in and not move.
I have in-between days too. The days that aren't as severe as those bad days and yet they're worse than the good days. Today is one of those days. My clothes touching my skin make me cringe today. My skin is achy. Even the water in the shower made my skin hurt. I used to make fun of those old ladies who wore those big, loose muumuu dresses, sometimes those are called caftans. But I'm guessing those women had the same problem. I've considered finding myself a circus tent to use as a muumuu. As it is, I keep wearing the same stuff over and over because I know its comfortable. I'm wearing jeans two sizes too big and a cotton spaghetti-strapped tank top. I wear huge underwear now too. No more is there anything sexy about my undergarments. If it starts raining, I could take these things off and we could all take shelter beneath them. That's how big they are. I also started buying bras for comfort. I have two now that I never would have worn. They're soft and satin-y and don't look too bad. So at least my bras have some pretty to them.
On those really rough days, I take Vicodin like Doctor House is possessing me. Hang on, I got a bit sidetracked by the thought of being possessed by House. Mmmm... Hugh Laurie...
Okay, where was I? Oh, yes, the Vicodin. I have gotten to where I take three at night and if I absolutely need to, I will take two in the day time. But, I don't like to do that unless I'm going to the store or something else that requires walking. When I went to my fibro diagnosis appointment, I didn't take any pain meds. I had to walk from one end of the VA hospital to the other, then back again and then take the elevator up to the sixth floor where I walked some more. By the time I got to the nurse's triage area, my pain was bordering on a 9 of that 1-to-10 pain scale. By the way, that pain scale is infinitely flawed. Allie Brosh of "Hyperbole and a Half" fame says it so much better.
The doctor prescribed Cyclobenzaprine for me. Its a muscle relaxer, the generic form of Flexeril. I've been on it less than a week. Its supposed to help me sleep. I can say with certainty that it does indeed. The first night I took it, I did so at 6 PM, with my Vicodin. I was in bed and asleep by 730 PM. I was also awake and alert at 230 AM (I normally get up at 4 AM). Now I take it around 730 PM so I can go to bed at a normal hour. But, some mornings, I wake up so exhausted that I can barely stand up. Other mornings, I wake up alert, but sore. If I don't leave the house, I don't worry too much about how much I hurt- unless its a bad day, then I pop two Vicodin just to get through my day. I have to say, as hard as it was to get the Vicodin from the VA doctors, they've been fantastic about upping my dosage as I've needed it.
Below is a list of things that Fibromyalgia (booming, echoing) can cause. From this website.
Stiffness: Body stiffness may be particularly apparent upon awakening and after prolonged periods of sitting or standing in one position or coincide with changes in temperature or relative humidity
Yup... that's me. Sometimes, the humidity causes me to hurt so much that I'd rather not move my body because I know how its going to feel. And sometimes, I let my guard down- like while driving- and when I reach my destination, I'll forget that I've been sitting for an hour and when I go to stand up, the pain screams through my whole body like an angry woman on the Jerry Springer Show.
Increased Headaches Or Facial Pain: Fibromyalgia patients may experience frequent migraine, tension, or vascular headaches. Pain may also consist of referred pain to the temporal area (temples) or behind the eyes. Approximately one-third of patients with fibromyalgia are thought to have pain and dysfunction of the temporomandibular joint, or TMJ, (located where the jaw meets the ear) which produces not only headaches but also jaw and facial pain.
I don't get headaches or an increase in pain. My eyes do feel achy and slightly dry and tired.
Sleep Disturbances: Despite sufficient amounts of sleep, FMS patients may awaken feeling non-refreshed, as if they have barely slept. Alternatively, they may have trouble falling asleep or staying asleep. Some also suffer from the condition, sleep apnea. The reasons for the non-restorative sleep and other sleep difficulties of fibromyalgia are unknown.
I haven't slept through the night in more than five years.
Gastrointestinal Complaints: Digestive disturbances, abdominal pain, and bloating are quite common in FMS as are constipation and/or diarrhea (also known as "irritable bowel syndrome" or IBS).
Let me just say that I've had my gall bladder removed (twenty-one years ago) and the problem related to that got increasingly worse till it came down to me not leaving the house. And if I did, I didn't eat before I left.
Genito-Urinary Problems: FMS patients may experience increased frequency of urination or increased urgency to urinate, typically in the absence of a bladder infection. Women with FMS may have more painful menstrual periods or experience worsening of their FMS symptoms during this time. Conditions such as vulvar vestibulitis or vulvodynia, characterized by a painful vulvar region and painful sexual intercourse, may also develop in women.
I do have increased urgency, but I thought it was related to my water pills, not Fibromyalgia. My "female time" got worse, but that's also related to peri-menopause.
Paresthesia: Numbness or tingling, particularly, in the hands or feet, sometimes accompanies FMS. Also known as "paresthesia", the sensation can be described as prickling or burning.
I have carpal tunnel syndrome, so its difficult to say if the numbness and tingling is related to that or Fibromyalgia.
And this "numbness" is a misnomer. Numbness implies "lack of feeling". Its only as numb as it can be with pain. So figure that one out.
Temperature Sensitivity: Persons with fibromyalgia tend to be highly sensitive to ambient temperature. Some often feel abnormally cold (compared to others around them) while others feel abnormally warm. An unusual sensitivity to cold in the hands and/or feet, accompanied by color changes in the skin, sometimes occurs in persons with fibromyalgia. This condition is known as "Raynaud's Phenomenon".
I also didn't notice this problem till I was asked about it. I prefer my house to be colder than normal people do, but that's me... and I live with it causing cold hands.
Skin Complaints: Nagging symptoms, such as itchy, dry, or blotchy skin, may accompany FMS. Dryness of the eyes and mouth is also not uncommon. Additionally, fibromyalgia patients may experience a sensation of swelling, particularly in extremities, like fingers. A common complaint is that a ring no longer fits on a finger. Such swelling, however, is not equivalent to the joint inflammation of arthritis; rather, it is a localized anomaly of FMS whose cause is currently unknown.
None of my rings fit properly. I also didn't know I had dry eyes till the doctor asked me about it, because I thought my eyes burning was related to allergies. And my skin, when it aches, also itches slightly.
Chest Symptoms: Individuals with fibromyalgia who engage in activities involving continuous, forward body posture (i.e., typing, sitting at a desk, etc.) often have special problems with chest and upper body pain known as "thoracic pain and dysfunction".1. Often accompanying the pain is shallow breathing and postural problems. Patients may also develop a condition called "costochondralgia" which involves muscle pain where the ribs meet the chest bone. Such conditions may mimic heart disease and are therefore sometimes misdiagnosed. Note: Anyone experiencing chest pain should always consult a physician immediately. [Remember that persons with fibromyalgia can have other health problems!]
Yes. Good golly yes. I thought I was having a heart attack or at the very least, a severe asthma attack. This is the worst of the symptoms I've felt. Only because my big fear is having a heart attack.
Dysequilibrium: FMS patients may be troubled by light-headedness and/or balance problems which manifest themselves in a number of ways.
Again, yup. That's me. A few dizzy spells and a "whoooaaaa, the room is... I'm okay" moment or two.
Cognitive Disorders: Persons with FMS report a number of cognitive symptoms which tend to vary from day to day. These include difficulty concentrating, "spaciness," short-term memory lapses, and being overwhelmed easily. Many fibromyalgia patients refer to such symptoms as "fibro-fog".
YOU SHUT UP!
Leg Sensations: Some FMS patients may develop a neurological disorder known as "restless legs syndrome" (RLS) which involves an irresistible urge to move the legs particularly when at rest or when lying down. One recent study reported that 31% of the fibromyalgia patients studied had RLS.6 The syndrome may also involve periodic limb movements during sleep (PLMS) which can be very disruptive to both the patient and to his/her sleeping partner.
I thought I had restless leg syndrome.
Environmental Sensitivity: Hypersensitivity to light, noise, odors, and weather patterns is common and is usually explained as being a result of the hyper-vigilance seen in the nervous systems of patients with FMS. Allergic-like reactions to a variety of substances (i.e., medications, chemicals, food additives, pollutants, etc.) are common, and patients may also experience a form of non-allergic rhinitis consisting of nasal congestion/discharge and sinus pain, but in the absence of the immunologic reactions which the body experiences in allergic conditions.
Yes, but extremely mild. So mild that we're not sure I have this symptom set.
Depression and Anxiety: Although FMS patients are frequently misdiagnosed with depression or anxiety disorders ["it's all in your head"], research has repeatedly shown that fibromyalgia is not a form of depression or hypochondriasis. However, where depression or anxiety exist concomitant to fibromyalgia, their treatment is important as both can exacerbate FMS and interfere with successful symptom management.
I can say with all honesty that I am not depressed. My general practitioner gave me the Q and A assessment to see if I needed to be seen for depression and the fact we giggled our way through it was sort of an indication that I am not depressed.
It also takes about five years to get a Fibromyalgia diagnosis. And I've had this ongoing problem for just over five years. I asked about it about two years ago and was told, without any testing or questions, that I most certainly did not have it. I swear, that doctor I had then should have been a doctor in the 70s, back when women were just silly and emotional people who should change their hair color to boost their self-esteem. He also shot down my thoughts on restless leg syndrome.
I've had various forms of stress on a near-daily basis since April 13, 1995 (the day the Disabled Guy went from being "Jerry" to being "The Disabled Guy"). Since then, I've had two major surgeries and a few traumatic events (a car accident, a couple knee injuries). And the most recent surgery- the one I had to begin the Cyborg Invasion... I mean, my "knee replacement" surgery- may have kicked off a major bout with Fibromyalgia. So, in becoming a Cyborg Sapien, I pushed the Fibromyalgia into overdrive. And that's not a fun place to be.
Just for kicks and giggles, here's another link to another Fibro website. Over the last few years, I researched this disorder, but I didn't keep track of the websites. But this is one of the recent sites I visited.
Oh, by the way, my Chihuahuas- Luna and Jasper- had puppies last week. Six of them! Here's a photo of Luna and the litter.
