Hi there,
I was diagnosed with Fibro around 2 years ago, but now knowing the symptoms, I've carried it with me for around 45 years, my earliest memories being that I used to curl up every morning after breakfast, in front of the hot air vents that heated our house from around the age of ten. I hated doing physical education at school because I was physically unable to exercise through the pain. I did dreadful at school in general, and I was both a loner and hated going out. I did go to the doctor as a child with my symptoms, but they never found anything wrong, and I don't think Fibro would have been a realistic diagnosis back then, or even a common diagnosis as a child even now. They put the pains down to "growing pains" though I don't really recall their explanation for them being very widespread, and not really contained to one area of my body. I lived with the pain, and tried to ease it through hot baths, lying in the sun (during the summer) and later, long hot showers, and trying to get as much heat as possible to my body.
Fast forward to my thirties, and I moved from the UK to Canada. I went to the doctor with these pains as they got progressively worse, and my doctor suspected arthritis. I went for x-rays and was referred to a rheumatologist. I waited over six months for an appointment, and on the day of my appointment, it was a beautiful hot summers day. I had no significant pain. the doctor looked at the x-rays and did some diagnostic testing, and came to the conclusion that I did not have any sign of arthritis. That was the end of it. There was no further follow ups, no other possibilities, and I lived with the pain.
Fast forward to my early fifties, and I got shingles. The shingles themselves weren't too bad, but the migraine that came with it, and to a lesser extent, the postherpetic pain caused me some significant pain problems, for which I was prescribed Lyrica. I started on a low dose, and increased gradually, since it wasn't really getting rid of my pain. Once I was on around 300mg of Lyrica per day, my life changed. All the pain throughout my body, the pain that I had lived with since the start of my teen years just disappeared. For the first time IN MY LIFE, I actively sought exercise, jogging, then running, and cycling. My endurance was still pretty low, but I was doing something I had never done before. It was incredible. I lost around 30 pounds in weight and felt better than I can ever remember.
A few months later, my doctor suggested I try to come off the Lyrica (which, remember, I was only taking for shingles), and so gradually, I reduced the dose until I was no longer taking it. Within a month or so, the pain that I've lived with for most of my life came back, and I was suddenly no longer able to run, or even jog, and my cycling all but stopped. It was near the end of the biking season here anyway, so I didn't think a whole lot of it. I went through winter with a struggle, and then went back to my doctor. I was kind of embarrassed to say that I wanted my pain pills, but I told her my experience, and told her about my history, and my thinking that I had arthritis. She put the connection together that Lyrica would have no real effect for arthritis, and said it sounded more like I had Fibro. She sent me for more x-rays just to rule out arthritis again, and did some pressure tests, and diagnosed me there and then. I started back on Lyrica and worked back up to my previous dose. It seemed to work well for a year or so, but then it didn't reallly help much. I also felt that I'd developed some side-effects (blurry vision and poor concentration), though I couldn't say either one was certainly caused by the Lyrica. The doctor suggested that they probably were side-effects, and suggested that instead of increasing the dose, we try something else. I gradually came back off Lyrica and tried Amitriptyline. It did nothing for me at all, and I said that I'd rather put up with a bit of pain, and maybe slightly blurry vision/poor concentration on Lyrica than taking Amiltriptyline.
Taking Lyrica was hiding a shoulder injury that didn't heal - I put the only symptoms I had at the time (sun burn feeling in the arm) down to FM. When I stopped the Lyrica, the shoulder injury made itself very known, and I started physiotherapy. Apparently that was hiding a torn rotator cuff which became very evident when the shoulder injury was no longer a problem. I started Lyrica again on a lower dose at the same time as starting the physio. And that's where I am now. Lyrica on a lower dose that's really not doing anything for me. I wake up in significant pain every night in my legs and both my arms, but I'm reluctant to change to another medication, until the rotator cuff injury is mostly fixed. At that point, I will be going back to the doctor to see what else I can try.
I must say, my current doctor is fantastic, very supportive, and does everything she can to ensure she's as well informed on the current state of FM as she can.
I was diagnosed with Fibro around 2 years ago, but now knowing the symptoms, I've carried it with me for around 45 years, my earliest memories being that I used to curl up every morning after breakfast, in front of the hot air vents that heated our house from around the age of ten. I hated doing physical education at school because I was physically unable to exercise through the pain. I did dreadful at school in general, and I was both a loner and hated going out. I did go to the doctor as a child with my symptoms, but they never found anything wrong, and I don't think Fibro would have been a realistic diagnosis back then, or even a common diagnosis as a child even now. They put the pains down to "growing pains" though I don't really recall their explanation for them being very widespread, and not really contained to one area of my body. I lived with the pain, and tried to ease it through hot baths, lying in the sun (during the summer) and later, long hot showers, and trying to get as much heat as possible to my body.
Fast forward to my thirties, and I moved from the UK to Canada. I went to the doctor with these pains as they got progressively worse, and my doctor suspected arthritis. I went for x-rays and was referred to a rheumatologist. I waited over six months for an appointment, and on the day of my appointment, it was a beautiful hot summers day. I had no significant pain. the doctor looked at the x-rays and did some diagnostic testing, and came to the conclusion that I did not have any sign of arthritis. That was the end of it. There was no further follow ups, no other possibilities, and I lived with the pain.
Fast forward to my early fifties, and I got shingles. The shingles themselves weren't too bad, but the migraine that came with it, and to a lesser extent, the postherpetic pain caused me some significant pain problems, for which I was prescribed Lyrica. I started on a low dose, and increased gradually, since it wasn't really getting rid of my pain. Once I was on around 300mg of Lyrica per day, my life changed. All the pain throughout my body, the pain that I had lived with since the start of my teen years just disappeared. For the first time IN MY LIFE, I actively sought exercise, jogging, then running, and cycling. My endurance was still pretty low, but I was doing something I had never done before. It was incredible. I lost around 30 pounds in weight and felt better than I can ever remember.
A few months later, my doctor suggested I try to come off the Lyrica (which, remember, I was only taking for shingles), and so gradually, I reduced the dose until I was no longer taking it. Within a month or so, the pain that I've lived with for most of my life came back, and I was suddenly no longer able to run, or even jog, and my cycling all but stopped. It was near the end of the biking season here anyway, so I didn't think a whole lot of it. I went through winter with a struggle, and then went back to my doctor. I was kind of embarrassed to say that I wanted my pain pills, but I told her my experience, and told her about my history, and my thinking that I had arthritis. She put the connection together that Lyrica would have no real effect for arthritis, and said it sounded more like I had Fibro. She sent me for more x-rays just to rule out arthritis again, and did some pressure tests, and diagnosed me there and then. I started back on Lyrica and worked back up to my previous dose. It seemed to work well for a year or so, but then it didn't reallly help much. I also felt that I'd developed some side-effects (blurry vision and poor concentration), though I couldn't say either one was certainly caused by the Lyrica. The doctor suggested that they probably were side-effects, and suggested that instead of increasing the dose, we try something else. I gradually came back off Lyrica and tried Amitriptyline. It did nothing for me at all, and I said that I'd rather put up with a bit of pain, and maybe slightly blurry vision/poor concentration on Lyrica than taking Amiltriptyline.
Taking Lyrica was hiding a shoulder injury that didn't heal - I put the only symptoms I had at the time (sun burn feeling in the arm) down to FM. When I stopped the Lyrica, the shoulder injury made itself very known, and I started physiotherapy. Apparently that was hiding a torn rotator cuff which became very evident when the shoulder injury was no longer a problem. I started Lyrica again on a lower dose at the same time as starting the physio. And that's where I am now. Lyrica on a lower dose that's really not doing anything for me. I wake up in significant pain every night in my legs and both my arms, but I'm reluctant to change to another medication, until the rotator cuff injury is mostly fixed. At that point, I will be going back to the doctor to see what else I can try.
I must say, my current doctor is fantastic, very supportive, and does everything she can to ensure she's as well informed on the current state of FM as she can.
