Iknopain2
New member
- Joined
- Jun 26, 2021
- Messages
- 4
- Reason
- DX FIBRO
- Diagnosis
- 10/2010
- Country
- US
- State
- VA
I'm reminded that Fibromyalgia is a syndrome - a person with fibromyalgia does not usually have just pain, or just tiredness, they have a host of other symptoms or diseases. Or maybe they had a disease and then fibromyalgia - the pain of all the muscles and the tiredness decided to join the "party". Either way, it's not fair that doctors dismiss something they do not understand.
I had a really difficult time getting diagnosed with Fibromyalgia in 2010. I was overweight, had cholesterol problems, high blood pressure, low vitamin D levels, and had had back surgery two years prior. I had other interesting combinations of issues too: polycystic ovaries, prediabetes, moderate sleep apnea, asthma, depression, anxiety, and the list kept growing. My primary doctor was an internist, she wanted to blame everything on my obesity and my cholesterol, high blood pressure, and diabetes. My rheumatologist wanted to tell me it was all in my head because he saw no joint issues and I did not have Lyme's disease or any other autoimmune disorders. My neurosurgeon who had done the back surgery believed it was from the trauma of the original back injury, but that was only after my diagnosis was made finally by my very reluctant rheumatologist. Each doctor looked to their specialty first and ignored me when I said what was really bothering me had nothing to do with their specialties. The Neurologist found nothing wrong. The Internist found everything wrong, just didn't want to talk about Fibromyalgia.
In total, I had to see five doctors and have many tests and repeated visits to explain my symptoms before my rheumatologist finally made the diagnosis. The Rheumatologist wanted me to see if anything else was causing the pain and found out it was not caused by malfunctions in my joints. He had to admit finally that the only thing left to name the pain and arrangement of symptoms was Fibromyalgia - the pain of my muscles. He was unapologetic when he exclaimed, "Do not expect me to help you get disability." I had never even brought up the discussion. I wanted to work! I wanted that independence! I was ashamed of his behavior towards me. Don't write me off until I'm ready to throw in the towel, I grumbled to myself. I cried quietly, not because of his mistreatment, but because I knew that I would have to fight for the rest of my life to be heard concerning my pain. Keeping quiet is not an option. And speaking about my pain in a rational way is my right. Looking back, I should have yelled at him and given him a piece of my mind. Oh well. In the long run, I stopped going to his office - so my money stopped going into his pocket. I believe that was the best outcome.
I have had to change doctors four or five times because of changing federal legislation, because of insurance companies that dropped me, and because doctors would refuse to listen to me. I have had a doctor raise her hand to stop me from talking during our first interview because she had to tell me she did not believe that Fibromyalgia existed. She believed that I should eat better food and see a psychiatrist. That would solve my problems. While I agree that food plays a huge part in my health, and mental health does matter, her dismissal did not sit well with me. I walked out and refused to pay her.
Pain management is a right. If a human would not allow an animal to be in our type of pain, why would the government or any person alive allow us humans to live in this pain, daily, for the rest of our lives? More can be done in research and with medicine to manage our pain. Of course, we are not going to die of this pain, but should that matter? Each person decides their own gauge of how much pain they are in, no other person can decide that for them. No one has the right to turn to you or me and say "Just deal with it." If they had to live with our pain, they would change their minds very quickly. It's sad that there is no way we can make them understand that. We do deal with our pain, we would just prefer to have at least a little less pain, or hopefully no pain one day. We with Fibromyalgia have to stick up for ourselves and each other. We won't have the exact symptoms or arrangement or symptoms. We won't have the exact cures for each other. We can't make the pain go away for each other. But we can speak up when a doctor is dismissive. We can call out legislation that negates our rights to receive adequate and humane care for our pain.
Don't give up. If someone is telling you that you are imagining your symptoms or that your symptoms do not make sense, keep bugging them about it or find a new doctor that will test what needs to be tested. Do research to find out the newest information about the different symptoms you are experiencing. And most of all, keep talking to us here in the community. No one else will understand. But we will.
I had a really difficult time getting diagnosed with Fibromyalgia in 2010. I was overweight, had cholesterol problems, high blood pressure, low vitamin D levels, and had had back surgery two years prior. I had other interesting combinations of issues too: polycystic ovaries, prediabetes, moderate sleep apnea, asthma, depression, anxiety, and the list kept growing. My primary doctor was an internist, she wanted to blame everything on my obesity and my cholesterol, high blood pressure, and diabetes. My rheumatologist wanted to tell me it was all in my head because he saw no joint issues and I did not have Lyme's disease or any other autoimmune disorders. My neurosurgeon who had done the back surgery believed it was from the trauma of the original back injury, but that was only after my diagnosis was made finally by my very reluctant rheumatologist. Each doctor looked to their specialty first and ignored me when I said what was really bothering me had nothing to do with their specialties. The Neurologist found nothing wrong. The Internist found everything wrong, just didn't want to talk about Fibromyalgia.
In total, I had to see five doctors and have many tests and repeated visits to explain my symptoms before my rheumatologist finally made the diagnosis. The Rheumatologist wanted me to see if anything else was causing the pain and found out it was not caused by malfunctions in my joints. He had to admit finally that the only thing left to name the pain and arrangement of symptoms was Fibromyalgia - the pain of my muscles. He was unapologetic when he exclaimed, "Do not expect me to help you get disability." I had never even brought up the discussion. I wanted to work! I wanted that independence! I was ashamed of his behavior towards me. Don't write me off until I'm ready to throw in the towel, I grumbled to myself. I cried quietly, not because of his mistreatment, but because I knew that I would have to fight for the rest of my life to be heard concerning my pain. Keeping quiet is not an option. And speaking about my pain in a rational way is my right. Looking back, I should have yelled at him and given him a piece of my mind. Oh well. In the long run, I stopped going to his office - so my money stopped going into his pocket. I believe that was the best outcome.
I have had to change doctors four or five times because of changing federal legislation, because of insurance companies that dropped me, and because doctors would refuse to listen to me. I have had a doctor raise her hand to stop me from talking during our first interview because she had to tell me she did not believe that Fibromyalgia existed. She believed that I should eat better food and see a psychiatrist. That would solve my problems. While I agree that food plays a huge part in my health, and mental health does matter, her dismissal did not sit well with me. I walked out and refused to pay her.
Pain management is a right. If a human would not allow an animal to be in our type of pain, why would the government or any person alive allow us humans to live in this pain, daily, for the rest of our lives? More can be done in research and with medicine to manage our pain. Of course, we are not going to die of this pain, but should that matter? Each person decides their own gauge of how much pain they are in, no other person can decide that for them. No one has the right to turn to you or me and say "Just deal with it." If they had to live with our pain, they would change their minds very quickly. It's sad that there is no way we can make them understand that. We do deal with our pain, we would just prefer to have at least a little less pain, or hopefully no pain one day. We with Fibromyalgia have to stick up for ourselves and each other. We won't have the exact symptoms or arrangement or symptoms. We won't have the exact cures for each other. We can't make the pain go away for each other. But we can speak up when a doctor is dismissive. We can call out legislation that negates our rights to receive adequate and humane care for our pain.
Don't give up. If someone is telling you that you are imagining your symptoms or that your symptoms do not make sense, keep bugging them about it or find a new doctor that will test what needs to be tested. Do research to find out the newest information about the different symptoms you are experiencing. And most of all, keep talking to us here in the community. No one else will understand. But we will.
