NeraCaligula
New member
- Joined
- May 6, 2015
- Messages
- 2
- Reason
- Other
- Diagnosis
- 05/2015
- Country
- US
- State
- OH
Hi,
I have been having medical issues for at least eight years, and have been brushed off and offered antidepressants for most of them.
Fall of 2013, I got a lot worse. Extreme fatigue, moderate pain to severe at times, insomnia, waking up like I took a beating all night long, cannot find the right word, dizziness, stiffness, joint aches, muscle spasms in my neck/back which (I think) plays a part in my migraine headaches, my leg sometimes feels like it is disappearing. I get dizzy in direct sunlight and in stores after about 20-30 minutes. Also, with sunlight through trees. The light issues have at times caused me to feel like I am blacking out--everything gets dark in my outer field of vision and works its way in to blackness.
Promised my husband and MIL that I would make an appointment with a new PCP. This doctor did not brush me off and offer me antidepressants right off the bat--I liked that!
Blood tests apart from CRP were normal.
So new PCP gave me a steroid injection and told me it was definitely an autoimmune process, which one he didn't know. We needed to wait to see how it would present. Went on to say fibromyalgia was not a real diagnosis, but a placeholder until the real diagnosis was made (lupus, MS, scleroderma, etc.). At the time, I didn't give this a second thought. I was just so glad to not have been brushed off again!
I kept trying different things and just living and waiting for my AI process to present itself so I could get treatment. During this time Raynaud's started and also a lacy pattern on my arms, back, and thighs.
March 2015, my hair was falling out in clumps when I ran my fingers through it; extreme fatigue, joint pain, and muscle spasms all back! So went back to the doctor in late April. Honestly, I thought it was lupus and he apparently did too. He again told me about fibromyalgia not being a real disease. Gave me Medrol taper, steroid shot, and Neurontin at night. Drew blood and guess what? All negative as far as the SLE tests!
Just had an appointment today because I am sick with pneumonia. Anyway, he again tells me about fibro not being a real diagnosis. Gives me another steroid shot and antibiotics. I ask how much ibuprofen I can take for my severe joint pains, which thankfully are only once or twice a month or maybe every other month if I am lucky, and he said as much as I want! But I am afraid of ulcers and it doesn’t really help.
Since he keeps bringing up fibromyalgia and it not being a real diagnosis, to me it kind of sounds like he is saying he thinks I have fibromyalgia even though to him it is not a “real diagnosis”. Does that make sense? I am at a loss about what to do anymore. I asked for a referral to a rheumatologist who treats fibro to see if she even thinks that I may have it, and if so treat me for it since I doubt my PCP will, but haven’t gotten one yet. If I do get one and I do have the “not real” fibro, should I find a new PCP? I don’t like going to doctors in general, and the fewer I have to go to the better lol.
Any advice is greatly appreciated! I am tired of feeling crazy.
I have been having medical issues for at least eight years, and have been brushed off and offered antidepressants for most of them.
Fall of 2013, I got a lot worse. Extreme fatigue, moderate pain to severe at times, insomnia, waking up like I took a beating all night long, cannot find the right word, dizziness, stiffness, joint aches, muscle spasms in my neck/back which (I think) plays a part in my migraine headaches, my leg sometimes feels like it is disappearing. I get dizzy in direct sunlight and in stores after about 20-30 minutes. Also, with sunlight through trees. The light issues have at times caused me to feel like I am blacking out--everything gets dark in my outer field of vision and works its way in to blackness.
Promised my husband and MIL that I would make an appointment with a new PCP. This doctor did not brush me off and offer me antidepressants right off the bat--I liked that!
Blood tests apart from CRP were normal.
So new PCP gave me a steroid injection and told me it was definitely an autoimmune process, which one he didn't know. We needed to wait to see how it would present. Went on to say fibromyalgia was not a real diagnosis, but a placeholder until the real diagnosis was made (lupus, MS, scleroderma, etc.). At the time, I didn't give this a second thought. I was just so glad to not have been brushed off again!
I kept trying different things and just living and waiting for my AI process to present itself so I could get treatment. During this time Raynaud's started and also a lacy pattern on my arms, back, and thighs.
March 2015, my hair was falling out in clumps when I ran my fingers through it; extreme fatigue, joint pain, and muscle spasms all back! So went back to the doctor in late April. Honestly, I thought it was lupus and he apparently did too. He again told me about fibromyalgia not being a real disease. Gave me Medrol taper, steroid shot, and Neurontin at night. Drew blood and guess what? All negative as far as the SLE tests!
Just had an appointment today because I am sick with pneumonia. Anyway, he again tells me about fibro not being a real diagnosis. Gives me another steroid shot and antibiotics. I ask how much ibuprofen I can take for my severe joint pains, which thankfully are only once or twice a month or maybe every other month if I am lucky, and he said as much as I want! But I am afraid of ulcers and it doesn’t really help.
Since he keeps bringing up fibromyalgia and it not being a real diagnosis, to me it kind of sounds like he is saying he thinks I have fibromyalgia even though to him it is not a “real diagnosis”. Does that make sense? I am at a loss about what to do anymore. I asked for a referral to a rheumatologist who treats fibro to see if she even thinks that I may have it, and if so treat me for it since I doubt my PCP will, but haven’t gotten one yet. If I do get one and I do have the “not real” fibro, should I find a new PCP? I don’t like going to doctors in general, and the fewer I have to go to the better lol.
Any advice is greatly appreciated! I am tired of feeling crazy.