Hi, I'm new to this forum. After being diagnosed in 2019 with fibromyalgia, I'm finally coming to terms with believing the diagnosis is correct, and what it means for me.
A little history first. I am a very active person, and always have been. I was a short distance runner for awhile but after a few injuries, I turned to the stair climber and elliptical. However, pre-running and gym machines, I experienced my first "locking" joint at age 16. I was working at a fast food restaurant bending down to stack meat and when I tried to move one of my ankles (I think right), it was locked in place and extremely painful. From there it swelled up and I was unable to walk on it for days. X-rays were all normal. This sort of thing happened off and on to various degrees from then on. The most recent being March 19th when I woke up, walked a bit then felt a lot of pain in my right ankle. I tried to move it around as it sometimes stops the "locking" but it became stiff and stuck in one painful position. I got a phone appointment with a Kaiser doctor who I had NEVER seen. After NOT reading my chart and listening to me describe what happened just that morning, she diagnosed me with gout. Pretty much sure her diagnosis was wrong, I went to the ER for x-rays and hopefully more. The doctor at the ER was stumped and even asked if I might have slept walked and tripped! He sent me home with some Naprosyn and a referral to a rheumatologist-- but no urine and no blood work were ordered, and I was too tired to fight for lab work. I sent a message to my doctor who ordered both urine and blood work, and I saw a rheumatologist who also ordered more blood work. Bottom line--everything was normal, except my pain and locking joint(s).
Flash back to 2019. After a weekend of a lot of driving, I woke up with super stiff and painful muscles, and it felt like every joint was out of place. My gait was unstable, and I seriously felt like I went from age 54 (at the time) to age 90 overnight. This went on for weeks and I did go to my doctor at the time, who referred me to a rheumatologist. Blood and urine were collected--all normal. CT scan on my brain--all normal. The final conclusion was a diagnosis of fibromyalgia, which I wondered if I was just being diagnosed with as there was no where else to put me. I was also allowed to go to a chiropractor who kept making remarks like "A TRUE fibro patient would feel this, or wouldn't feel that..." etc. Leaving me to believe that he didn't think I had fibromyalgia, and/or he thought doctors put people in the fibro category as a catchall when there is no other diagnosis due a patient's normal tests.
My symptoms current and past are: lower back pain/instability, right side pain in rib area (a ton of testing has been done and nothing found), locking joints, joints feeling out of place, sore and stiff muscles, a lot of skin issues including unexplained rashes on face, eczema, red eyelids, solar purpura (diagnosed a few months ago)-https://www.verywellhealth.com/solar-purpura-5188935,. At the same time I was diagnosed with solar purpura, my right hand became super swollen just from kneading some bread for 5 minutes. Ever since, two of my fingers on my right hand are constantly swollen and become stiff a lot. I can no longer wear a ring on my right ring finger. I've also have/had stomach issues, dry eyes, intolerance to heat, depression, and Raynaud's disease- and I also had Sever's disease as a kid--.I've also always had issues with certain materials and textures. The thought of even touching certain fabrics/materials/textures can make me want to literally throw up.
Although I can't be sure as I don't recall all of my episodes after 57 years on this planet, but it seems to me they all started in the spring or when the weather got warmer. I don't know if all of these symptoms are related or how many, if any, are independent of each other. At 57 I'm sure I have a fair amount of osteoarthritis, so it's difficult to decipher what is causing what when it comes to joint pain and stiffness.
What I'd like to know is do any of these symptoms that I described NOT sound like fibro? Has anyone else had a medical person infer that their fibro may not be the correct diagnosis, or perhaps they don't believe in fibro at all? Does anyone see a correlation with spring-like weather/blossoming of plants and a flare up? Any other thoughts and advice would be welcome as well.
Thanks and glad I found this group!
Kathy
A little history first. I am a very active person, and always have been. I was a short distance runner for awhile but after a few injuries, I turned to the stair climber and elliptical. However, pre-running and gym machines, I experienced my first "locking" joint at age 16. I was working at a fast food restaurant bending down to stack meat and when I tried to move one of my ankles (I think right), it was locked in place and extremely painful. From there it swelled up and I was unable to walk on it for days. X-rays were all normal. This sort of thing happened off and on to various degrees from then on. The most recent being March 19th when I woke up, walked a bit then felt a lot of pain in my right ankle. I tried to move it around as it sometimes stops the "locking" but it became stiff and stuck in one painful position. I got a phone appointment with a Kaiser doctor who I had NEVER seen. After NOT reading my chart and listening to me describe what happened just that morning, she diagnosed me with gout. Pretty much sure her diagnosis was wrong, I went to the ER for x-rays and hopefully more. The doctor at the ER was stumped and even asked if I might have slept walked and tripped! He sent me home with some Naprosyn and a referral to a rheumatologist-- but no urine and no blood work were ordered, and I was too tired to fight for lab work. I sent a message to my doctor who ordered both urine and blood work, and I saw a rheumatologist who also ordered more blood work. Bottom line--everything was normal, except my pain and locking joint(s).
Flash back to 2019. After a weekend of a lot of driving, I woke up with super stiff and painful muscles, and it felt like every joint was out of place. My gait was unstable, and I seriously felt like I went from age 54 (at the time) to age 90 overnight. This went on for weeks and I did go to my doctor at the time, who referred me to a rheumatologist. Blood and urine were collected--all normal. CT scan on my brain--all normal. The final conclusion was a diagnosis of fibromyalgia, which I wondered if I was just being diagnosed with as there was no where else to put me. I was also allowed to go to a chiropractor who kept making remarks like "A TRUE fibro patient would feel this, or wouldn't feel that..." etc. Leaving me to believe that he didn't think I had fibromyalgia, and/or he thought doctors put people in the fibro category as a catchall when there is no other diagnosis due a patient's normal tests.
My symptoms current and past are: lower back pain/instability, right side pain in rib area (a ton of testing has been done and nothing found), locking joints, joints feeling out of place, sore and stiff muscles, a lot of skin issues including unexplained rashes on face, eczema, red eyelids, solar purpura (diagnosed a few months ago)-https://www.verywellhealth.com/solar-purpura-5188935,. At the same time I was diagnosed with solar purpura, my right hand became super swollen just from kneading some bread for 5 minutes. Ever since, two of my fingers on my right hand are constantly swollen and become stiff a lot. I can no longer wear a ring on my right ring finger. I've also have/had stomach issues, dry eyes, intolerance to heat, depression, and Raynaud's disease- and I also had Sever's disease as a kid--.I've also always had issues with certain materials and textures. The thought of even touching certain fabrics/materials/textures can make me want to literally throw up.
Although I can't be sure as I don't recall all of my episodes after 57 years on this planet, but it seems to me they all started in the spring or when the weather got warmer. I don't know if all of these symptoms are related or how many, if any, are independent of each other. At 57 I'm sure I have a fair amount of osteoarthritis, so it's difficult to decipher what is causing what when it comes to joint pain and stiffness.
What I'd like to know is do any of these symptoms that I described NOT sound like fibro? Has anyone else had a medical person infer that their fibro may not be the correct diagnosis, or perhaps they don't believe in fibro at all? Does anyone see a correlation with spring-like weather/blossoming of plants and a flare up? Any other thoughts and advice would be welcome as well.
Thanks and glad I found this group!
Kathy
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