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  1. #1
    Senior Member Mal12345's Avatar
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    Default Coming to Terms with Fibromyalgia

    Fibromyalgia is a fairly common neurological disorder affecting at least 5 million people here in the United States. Some estimates place the true number at around 10 million people, but it goes undiagnosed for many people, particularly men. It seems that I was born with it because it is a genetic disorder, but there are environmental factors called "triggers" that can bring an increase in symptoms (called flare ups). I was finally diagnosed with FM last February by a rheumatologist.

    It did not start out as something that could be diagnosed easily. The only symptom I can recall as a child was playing games like kick ball where, upon kicking the ball hard with my right foot, my right hip area would explode with pain. This would lead to a loud cry of pain and me trying to limp to first base, only to fall to the ground before I was half way there. One time when this happened in PE class the teacher said he thought I was crying because I was upset for being called out, and not because I was in some very serious pain. Do kids limp as they are called out at first base? I didn't think so. The hard limping I was doing would seem to indicate pain, right? And not being upset over the fact that I kicked the ball right to the pitcher. Also, when I fell down, I was clutching my right hip. Ok, I admit it; I always clutch at my right hip when I am disappointed in something. It's not severe pain at all. Or maybe I was pretending to be in pain so I had an excuse for making such a lame kick. Right?

    Actually, it was caused by a mysterious neurological disorder called fibromyalgia. And it really sucks.

    Twenty-five years later, my muscles started aching, a change which took me by surprise. One day I was just fine (relatively), and the next day I could hardly hold a phone up to my ear because my muscles got tired out very quickly. I chalked it up to aging, although I didn't know anybody else who, at that age, experienced such a problem.

    Even as I type this, I have to stop every minute because my arms are too tired. It's not because I'm weak. I have worked out with weights for months at a time and had no relief from that symptom.

    Ten years later, every bone in my body started aching under the slightest pressure from outside. And then my tendons started giving me a lot of trouble. I was walking around stooped over from back pain. I was only 48 years old, but I shuffled around like a broken-down 80-year-old man.

    I went to see a cheap doctor at the "free" clinic. She told me - without doing any range of motion testing whatsoever - that I had arthritis. She had a blood sample taken to rule out rheumatoid arthritis. After researching arthritis at reputable websites such as mayoclinic.org, I found that it was a rather questionable diagnosis. So I went back to that doctor, asked her to put her fingers between mine, and told her that it hurt. I have no arthritis nodules at all. I've seen arthritis nodules. And even if I had arthritis in my fingers, it wouldn't hurt that bad. So I told her that holding our fingers that way hurts and that I've never known anybody my age to have that kind of pain. She then stated that I have osteoarthritis (explaining as if it was obvious, like explaining 2+2=4 to an imaginative child who thinks that 2+2 can equal anything), and she explained that some people just age more quickly than others. She prescribed 1600 MG of Tylenol each day for the pain.

    This last year, a couple of guys have shaken my hand hard and, without even meaning to, have practically brought me to my knees with pain.

    So for over 3 years I went along with the osteoarthritis diagnosis, although I kept a place of doubt in my head because the pain wasn't just in my joints. At times I speculated that I also had bone cancer. I also researched fibromyalgia but couldn't come to a conclusion about it because the descriptions of FM are rather vague.

    Early this year I visited a PA at a better clinic about my knee pain. He did a range of motion test on my knee. This range of motion test is supposed to bring out some painful responses if there is knee damage (from arthritis, tendinitis, etc), but I didn't respond at all. He said "hmmm." So I told him about the pain in my elbows. He did a range of motion exam on my left elbow which I did not react to at all.

    The next thing I know he starts jabbing at various points of my body with both index fingers. He asked me if that hurts. I said "Yes. Yes. Yes. Yes." He declared it to be fibromyalgia.

    I then went to see a rheumatologist and also got a diagnosis of fibromyalgia (as well as chronic fatigue).

    I've spent the last 8 months trying to convince myself that I have FM and not arthritis. I know it's true. It just takes some getting used to.
    Last edited by Mal12345; 10-01-2017 at 01:17 PM.
    "If you try to build something that is idiot-proof, the universe will build a better idiot."
    I'm an extrovert trapped within an introverted soul.

  2. #2
    Iron Maiden fidelia's Avatar
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    If you haven't read it, When the Body Says No by Gabor Mate is worth checking out.

    I know quite a few people with fibromyalgia, but much less who are male. I'm really sorry you're dealing with that. I've not found that the medical system has much for answers. I'm sure you're aware already, but don't trust that your doctor will present or even know the pros and cons of taking certain meds. Research side effects etc for yourself! I've been mysteriously I'll for the better part of ten years and am very grateful that I didn't take most of what was prescribed to deal with my symptoms as a stop gap measure.
    Likes Peter Deadpan, Mal12345 liked this post

  3. #3
    Senior Member Forever_Jung's Avatar
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    Quote Originally Posted by fidelia View Post
    If you haven't read it, When the Body Says No by Gabor Mate is worth checking out.
    Seconded. I'm not sure how much traction the book gets outside of Canada, but it's worth a read.

    Based on what you wrote, I can certainly see why it would be hard to accept such a condition. I didn't realize that's what it's like, I'm kind of impressed you wrote all that under such duress. I can't even write while drowsy.

  4. #4
    Iron Maiden fidelia's Avatar
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    There have been some promising advances in what research has been done about contributing causes of fibromyalgia and CF. I think that as debilitating as it is (and I know it's no joke to live with it day to day), in some ways it's a more promising diagnosis than arthritis. I have not experienced pain like that, but I have experienced crushing soul sucking fatigue for extended periods of time and it deeply impacts social relationships, doing things you enjoy, sense of identity, accomplishing meaningful work, saps your emotional reserves and makes even normal tasks feel like climbing Mt Everest

    Does the pain you feel come and go or is it bad all the time?

  5. #5
    Senior Member Mal12345's Avatar
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    Quote Originally Posted by fidelia View Post
    There have been some promising advances in what research has been done about contributing causes of fibromyalgia and CF. I think that as debilitating as it is (and I know it's no joke to live with it day to day), in some ways it's a more promising diagnosis than arthritis. I have not experienced pain like that, but I have experienced crushing soul sucking fatigue for extended periods of time and it deeply impacts social relationships, doing things you enjoy, sense of identity, accomplishing meaningful work, saps your emotional reserves and makes even normal tasks feel like climbing Mt Everest

    Does the pain you feel come and go or is it bad all the time?
    The ups and downs these days mostly have to do with fatigue. I'm taking a lot of pain meds these days, such as Gabapentin and Cymbalta. Those take care of the random stabbing pains, for the most part. They stabilize the ups and downs of FM. I still have days where I start the day so fatigued I don't want to move. Caffeine helps with that, but it also aggravates other symptoms. Diet plays a big role in this disease. Caffeine and chocolate for me are aggravators. Chocolate contains theobromine which is famous for being poisonous to dogs. But it is also poisonous to humans when taken in sufficient doses. While theobromine won't have an effect on most people (except for a brief surge of energy), FM causes chemical sensitivity meaning that certain things I put in my body will have negative side-effects that don't occur to those who don't have FM.

    An example is the antibiotic cefuroxime (brand name Ceftin) that I took for an alleged sinus infection (I didn't have a sinus infection, but the clinic had to treat it as such in order to rule it out). I took it as prescribed, but after 10 days (of a 14-day cycle) I got really sick. I had intense stabbing pains in my right leg, right foot, and left elbow. I was strangely dizzy and my blood pressure was through the roof. In other words, I had classic symptoms of a Ceftin overdose while taking the standard prescribed dose of the med. The experience left me with chronic tinnitus in my left ear. I'm guessing that the high blood pressure caused a vein in my left ear to swell up and become damaged, thus putting pressure on the sound generating mechanism of the inner ear and creating a high-pitched whining sound.

    Listening to "orange noise" has a beneficial effect on the tinnitus, but it doesn't last long.

    FM patients have a lot of other symptoms that are called shadow syndromes. Hearing problems is one of them. The list is long and includes skin problems, memory loss, as well as abdominal and digestive issues and sleep apnea. While it's true that anybody can have these problems, FM patients have them at a greater rate, and instead of having one or two of the syndromes they tend to have most if not all of them. Low Vitamin D for example is very common in FM patients. I am taking 3,000 IU of D3 per day because my yearly blood tests always show that my Vitamin D levels are low.

    So-called brain fog (or fibro-fog) is always bothersome. We've all experience the problem of walking into a room and suddenly forgetting what we went in there for. But this happens to me all the time, even at work on the computer there. At work I have several windows open at the same time, perhaps 12 of them. Sometimes, while switching from one window to another, I will forget what I went there for and have to back track through tabs, at times finding myself clicking randomly on tabs trying to figure out what I was trying to do. And yet I am still faster on the job than most of my co-workers.

    I'm taking between 15 and 20 pills a day. Just a few years ago I wasn't taking anything except Nexium.
    "If you try to build something that is idiot-proof, the universe will build a better idiot."
    I'm an extrovert trapped within an introverted soul.

  6. #6
    Senior Member Mal12345's Avatar
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    Quote Originally Posted by Forever_Jung View Post
    Seconded. I'm not sure how much traction the book gets outside of Canada, but it's worth a read.

    Based on what you wrote, I can certainly see why it would be hard to accept such a condition. I didn't realize that's what it's like, I'm kind of impressed you wrote all that under such duress. I can't even write while drowsy.
    I am technically disabled but I refuse to quit working.
    "If you try to build something that is idiot-proof, the universe will build a better idiot."
    I'm an extrovert trapped within an introverted soul.

  7. #7
    morose bourgeoisie
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    I have it too. I just started taking Pristiq to control pain. At least I can run again.

  8. #8
    Senior Member Mal12345's Avatar
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    Quote Originally Posted by Stanton Moore View Post
    I have it too. I just started taking Pristiq to control pain. At least I can run again.
    I don't know about you, but I find doctors to be mostly disappointing. So many times I spent money on doctors and got zero value in return.
    "If you try to build something that is idiot-proof, the universe will build a better idiot."
    I'm an extrovert trapped within an introverted soul.

  9. #9
    Senior Member Mal12345's Avatar
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    Quote Originally Posted by fidelia View Post
    If you haven't read it, When the Body Says No by Gabor Mate is worth checking out.

    I know quite a few people with fibromyalgia, but much less who are male. I'm really sorry you're dealing with that. I've not found that the medical system has much for answers. I'm sure you're aware already, but don't trust that your doctor will present or even know the pros and cons of taking certain meds. Research side effects etc for yourself! I've been mysteriously I'll for the better part of ten years and am very grateful that I didn't take most of what was prescribed to deal with my symptoms as a stop gap measure.
    "When the Body Says No: Understanding the Stress-Disease Connection..."

    Stress (cortisol) causes FM flare-ups.

    Edited - I was in a hurry and used the wrong word.
    "If you try to build something that is idiot-proof, the universe will build a better idiot."
    I'm an extrovert trapped within an introverted soul.

  10. #10
    morose bourgeoisie
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    Quote Originally Posted by Mal12345 View Post
    I don't know about you, but I find doctors to be mostly disappointing. So many times I spent money on doctors and got zero value in return.
    I agree. I've been to many doctors, and most have been disappointing. You have to figure it out yourself when you have a chronic condition. I've been reading about diet as an answer.

    Nutrition Science Meets Common Sense | Dr. Georgia Ede | Diagnosisiet

    This website has a lot of info. The author claims to have cured her fibromyalgia with diet, although I haven't found that info yet.
    Likes magpie liked this post

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