When were you diagnosed?
I believe that my fibromyalgia started shortly after my hysterectomy in January of 1998. I didn’t get a formal diagnosis until 2004.
I believe that my fibromyalgia started shortly after my hysterectomy in January of 1998. I didn’t get a formal diagnosis until 2004.
What lead up to your diagnosis (symptoms, dr visits, etc)?
At first, I was chronically tired. I went to my doctor, and she ran every test she could think of. When all of that came back negative, she suggested I see a psychiatrist. Then the pain kicked in. I didn’t know what was going on. I talked to my neurologist about it. He was the one who diagnosed me.
At first, I was chronically tired. I went to my doctor, and she ran every test she could think of. When all of that came back negative, she suggested I see a psychiatrist. Then the pain kicked in. I didn’t know what was going on. I talked to my neurologist about it. He was the one who diagnosed me.
Were you working at the time?
I was working up until the chronic fatigue hit. I was trying to push through it to keep my job. It was just too hard to do. I had five kids at home. My house was falling apart, and I couldn’t keep up with the kids and their schedules. I was making too many mistakes at work, and I wasn’t handling dealing with the workers or the customers in a constructive way anymore. I knew it was time to give up my job and come home. I needed to put what energy I had into being with my family and putting my house back together.
I was working up until the chronic fatigue hit. I was trying to push through it to keep my job. It was just too hard to do. I had five kids at home. My house was falling apart, and I couldn’t keep up with the kids and their schedules. I was making too many mistakes at work, and I wasn’t handling dealing with the workers or the customers in a constructive way anymore. I knew it was time to give up my job and come home. I needed to put what energy I had into being with my family and putting my house back together.
What was your family life like (married? kids? etc?)
I was married with five kids. At the time the fibro hit, my oldest child was 15, and my youngest was 5.
I was married with five kids. At the time the fibro hit, my oldest child was 15, and my youngest was 5.
How did your family initially handle your illness?
Mostly, they didn’t notice for a long time. I tried not to let it interfere with our daily life activities. I did have to stop refereeing soccer games, but that was okay because my youngest two decided to leave the rec league to play in the club league. My older three were busy with high school and preparing to leave for college. They simply didn’t take notice of what I was going through. My husband was the one who had to deal with my illness the most. He felt so helpless and didn’t know how to help me.
Mostly, they didn’t notice for a long time. I tried not to let it interfere with our daily life activities. I did have to stop refereeing soccer games, but that was okay because my youngest two decided to leave the rec league to play in the club league. My older three were busy with high school and preparing to leave for college. They simply didn’t take notice of what I was going through. My husband was the one who had to deal with my illness the most. He felt so helpless and didn’t know how to help me.
How has your family/ work situation changed since Fibromyalgia entered your life?
The first thing that changed is that I can no longer work. I tried going back to work and didn’t make it a year. I simply don’t have the energy to keep both my house and a job. Since all of my children are now gone, keeping up with the house is much more difficult. As I’ve gotten older, I’m more symptomatic. Every day chores take a lot more time to complete.
The first thing that changed is that I can no longer work. I tried going back to work and didn’t make it a year. I simply don’t have the energy to keep both my house and a job. Since all of my children are now gone, keeping up with the house is much more difficult. As I’ve gotten older, I’m more symptomatic. Every day chores take a lot more time to complete.
What do you feel is the most challenging aspect of Fibro?
For me, the most challenging aspect of fibro is keeping up a positive attitude. Mental health is a huge part of fibro and is often overlooked. I have found that even with treatment, there are times that feelings of being overwhelmed just wash over me. Drugs can only do so much. People just don’t understand that there is no break from fibro. This is an every single minute of every single day disorder. I’m only human. I can be strong for only so long.
For me, the most challenging aspect of fibro is keeping up a positive attitude. Mental health is a huge part of fibro and is often overlooked. I have found that even with treatment, there are times that feelings of being overwhelmed just wash over me. Drugs can only do so much. People just don’t understand that there is no break from fibro. This is an every single minute of every single day disorder. I’m only human. I can be strong for only so long.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have a seizure disorder caused by a brain injury as a child, hypothyroidism, hypoglycemia, acid reflux as a result of a hiatal hernia, migraines, syncope, sleep apnea, vitamin B and D deficiencies, and possibly MS. It’s hard to say how they all intermingle with my fibro. Most of them have overlapping symptoms, so it’s hard to tell which ones belong to which condition. It makes it really hard to tell which one is to blame at any one time.
I have a seizure disorder caused by a brain injury as a child, hypothyroidism, hypoglycemia, acid reflux as a result of a hiatal hernia, migraines, syncope, sleep apnea, vitamin B and D deficiencies, and possibly MS. It’s hard to say how they all intermingle with my fibro. Most of them have overlapping symptoms, so it’s hard to tell which ones belong to which condition. It makes it really hard to tell which one is to blame at any one time.
What (if anything) have you found/ done that has improved your symptoms?
I have a heat cape that really helps relieve the pain in my neck and shoulders. I have pain patches that I can put on specific spots that have proven quite effective. Hot showers work well before bed. I have also found that finding the right mattress and putting the right amount on padding on top helps with my sleep. I make sure my sheets have a high thread count and that my pajamas are really soft. I try to make sure that anything that touches my skin is super soft. I’ve stopped wearing bracelets and anklets.
I have a heat cape that really helps relieve the pain in my neck and shoulders. I have pain patches that I can put on specific spots that have proven quite effective. Hot showers work well before bed. I have also found that finding the right mattress and putting the right amount on padding on top helps with my sleep. I make sure my sheets have a high thread count and that my pajamas are really soft. I try to make sure that anything that touches my skin is super soft. I’ve stopped wearing bracelets and anklets.
What is the best advice you’ve received regarding Fibromyalgia?
Pacing. I hate to hear that, but it’s really the best advice to get. I can get so much more done if I just make myself rest at regular intervals. Yes, it does take longer to get the job done. But at least I can get the job done. And isn’t that the point?
Pacing. I hate to hear that, but it’s really the best advice to get. I can get so much more done if I just make myself rest at regular intervals. Yes, it does take longer to get the job done. But at least I can get the job done. And isn’t that the point?
What was the worst advice that you followed?
Just live your life like nothing is wrong. I got this advice from my neurologist. I took his advice and tried to push through the pain and fatigue. The result is that my family didn’t know how much pain I was in. They thought everything was fine. I didn’t ask for help. It cost me my disability.
Just live your life like nothing is wrong. I got this advice from my neurologist. I took his advice and tried to push through the pain and fatigue. The result is that my family didn’t know how much pain I was in. They thought everything was fine. I didn’t ask for help. It cost me my disability.
What is one thing you’ve learned about yourself since your diagnosis?
I’m stronger than I thought I was. You can’t be a wimp and have this disorder. It will eat you alive. You have to dig deep and find strength that you never knew you had. I constantly surprise myself at what I can still do in spite of my limitations. That’s why we call ourselves fibro warriors!
I’m stronger than I thought I was. You can’t be a wimp and have this disorder. It will eat you alive. You have to dig deep and find strength that you never knew you had. I constantly surprise myself at what I can still do in spite of my limitations. That’s why we call ourselves fibro warriors!
Amanda says
Wow , each day I read stories after stories and I know I am not alone.
Thanks for all stories and blogs and may god bless all who have to live with Fibro
Julie says
You are welcome. I appreciate every one of the stories that have been shared here. We are all different but we each have so many similarities in our stories. If you’d ever like to share your own please email me.