I just found this site. When I started reading other stories, I literally just started to cry. I didn't realize that I'm not alone. I am 46 and started having headaches in my early teens, which then turned into migraines. Now, after 30 years, my migraines range from severe pain, to issues with light, vision and smells, weakness on one side of my body, vomiting, etc.. Mine are definitely brought on by hormones, but by several other issues as well....stress, certain foods, any sort of alcohol, changes in weather, elevation, etc.. I also end up in the ER when I can't control the vomitting. I was also diagnosed with fibromyalgia and rheumatoid arthritis 10 years ago.
I take daily meds, use Botox, and of course pain meds. I live with ice packs on my head and heat on my back and neck. I had to walk away from a lucrative career 2 years ago. I then tried a less stressful every day type of job, but I still couldn't depend on my health. Plus, I have short term memory issues due to the meds, which made office work tough. Not only do people not get chronic pain or migraines, they have no clue how hard it is to function when you're on the meds. When I'm out and about, makeup and hair are always done. When people look at me, they don't understand what I go through because I look ok. When I have to admit that I'm in pain and have to go home, or I'm home and can't go out, people don't get it.
I know that I will never be able to hold a job again, as I never have a day without some sort of pain. Everyday starts with a headache....it just depends whether it turns into a migraine. Combined with the fibromyalgia, arthritis and now scoliosis pain, I feel like my life has literally been taken away. I only sleep for hours at a time until the pain meds wear off, which makes getting up in the morning hard. Some days are so painful, I can't function and never get dressed. Then I have a day or two when I'm ok and can get a few things done. But if I push it too hard, I end up paying for it and am back in bed for days.
I was taught as a kid to not complain and "get through it." I was always a very active and athletic person. I feel such guilt for my health issues and try to hide them from my husband and daughters. Obviously, they all know when I'm "down," as they say, for days. But I rarely tell them when I go to the doctor or how much pain I'm actually in. They don't know that I'm in bed most of the day. I get dressed before they all come home. I don't want them to remember their mom as someone who was always in pain and taking medication. As it is, our lives are built around how "mommy feels" and if "mommy can do that" or not.
At times, I don't think my pain doctor even realizes how bad it is. My pain diary says one thing, but then I look ok and smile through most of the appointment, because I think I have to tough it out. I tell him how much pain I'm in and that this just can't be normal. He keeps prescribing the pain meds and doing injections on my neck and back. I have been asking for new MRI's and blood work, because I haven't had new ones in years. I feel like he could find something new in more current info and perhaps have me on a better treatment plan. I get the feeling the doctors in these big insurance companies are discouraged from doing expensive tests and are told to just keep writing prescriptions. My concern is that, with how badly my symptoms have become, that I may have MS or something more serious.
As you can probably tell, I'm really struggling. My parents keep telling me to go to the Mayo clinic and get some real answers. I just don't know how to do that with my insurance and without my previous income. Do you have any thoughts or suggestions?
Thank you so much!