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When you have a medical condition it's a good idea to learn all you can about it. Through research, talking with doctors and through support groups with other people. Most of this will be from my personal experience with fibromyalgia.
Before Disabled Disney, I had a fibromyalgia blog called HappyFibroGirl. I blogged about fibro and my mental health disorders. I didn't have very many and felt like I wasn't breaking through to where I wanted to be. So I stopped.
My fibromyalgia is still a source of inspiration to me. It contributes to why I am disabled.
My mom was diagnosed with fibromyalgia when I was a kid. She would complain of muscle spasms and muscle cramping. By the time I was an adult she was on heavy pain medications and pretty much never left her room. She wouldn't go to the store and even going out to her doctor's appointments was too much for her.
I was a CNA at the time and I thought she was exaggerating a little. In all honesty. I had pain all the time already by then because when I was 18 I fell at my job and injured my back. I had 4 months of physical therapy and was told I would have pain the rest of my life and there was nothing that could be done. So I thought if I could do what I was doing with my pain why couldn't she even go to the store?
Sometime during all of this, I was diagnosed with endometriosis. The pain from that was so bad at times I thought I was literally dying. It was recommended to me to have a hysterectomy but I wanted to have another child. So I waited and tried to get pregnant. The double-edged sword on this is endometriosis causes infertility. So I was in increasingly horrendous pain every month AND I couldn't get pregnant.
Sometime during all of this, I had my meniscus tear in my knee. Which led me to an orthopedic surgeon. And surgery on my knee and the end result is...you have arthritis which is an auto-immune disorder and you will most likely have pain for the rest of your life. Oh, and it will spread to other parts of your body.
So now I have my back injury and pain, endometriosis and my pain from that was now the week of my period, the week before and the week after. So almost all month and pain in my knee.
My mom had told me during all of this she thought I had fibromyalgia so I talked to my primary care about it and he was like. No, we have a definite diagnosis for all of your pain. This was years ago when fibromyalgia was thought to be mostly made up.
So onward I went. I eventually had my hysterectomy. The pain was so bad I had to. Emotionally dealing with that has been really hard. Being a mom was always my dream in life and I felt robbed because I could only have my daughter. But that's another blog post.
Jump forward to about 6 years ago. My back was cramping horribly. Nothing was helping so I went to my primary care and she said we will send you to pain management. Between the pain and the cramping in my back, it was controlling my life! She also said...I think you have fibromyalgia but I'm hesitant to diagnose you. Because it's still seen as "made up".
I told her if she thinks that the diagnosis that I agree with her and go ahead and do it. It's getting to be more widely accepted at this point.
I get to my pain management doctor and she was very nice and was researching a lot about fibromyalgia. She told me all about the research she was reading. That they believe fibromyalgia is an auto-immune disorder and she agreed with that. That muscle relaxers tended to help more than pain medicine. So she put me on muscle relaxers.
For me, the muscle relaxers do tend to help a little more. I think ibuprofen helped me a lot but I had to stop taking it. I had been taking ibuprofen since I was 18 and hurt my back. Ibuprofen now raises my blood pressure and has messed up my stomach something awful. So for a few years, I was on opiate pain meds and muscle relaxers. I am not currently seeing pain management because of some other symptoms I am having.
More Research Is Needed
While fibromyalgia has gained a lot more treatment options and belief in the condition...it still has quite a long way to go. I would love to see more research into the auto-immune angle and to know if it is. That could change the whole perception of it!
Because it's not something that can be seen we are told it's in our head or we are just whining. We are told we are drug seekers because of the pain and muscle cramping. At my last pain management doctor, he did some spinal Xrays and told me the radiologist out that he could see the cramping in my back. It's that bad. They can see the results on Xrays.
May 12 Fibromyalgia Awareness Day
With fibromyalgia awareness day coming up you can help get the word out! Help spread the word we need more research...we need more funding...we need more treatment and help! Write to your congressional representative and demand more government funding and do more for research!! We need a definitive blood test...they are getting close but not there yet and better treatment options!