Fibro-Girl

Something I don't talk about that much on this blog is my health issues. For the past 5 years I've struggled with some things that some people think are all in my head. Other people think it's all because I'm overweight. And lots of others attribute everything to my "stressful life." [Funny how other people assume that my life is stressful and don't stop to ask if I'm actually stressed! How do they know?!]

The thing is, I've never been able to get a definitive diagnosis. Maybe some people don't need that, but I do. Otherwise even I question whether I'm just a wimp that is imagining things.

One of my New Year's Resolutions was to take care of myself better. This includes eating better and exercising as much as I can. It also includes taking care of medical issues that have been eating at me for years but I've never done anything about.

Today I had a doctor's appointment that I kept, despite this being transplant week. I am at the end of my rope. This week has had me in much more pain that usual, and "usual" is no small amount of pain for me. I've been to many doctors in the last 3 years and nobody will help. Last week my doctor put me on a medication that I had a pretty severe (like, almost went to the ER severe) reaction to. He gave me one med that was highly contraindicated with another med I'm taking. So he was "fired" last week. Not knowing where else to go I called my mom crying. She is always forceful when I need her to be. She told me that I should go back to a doctor that I had as a teenager and also went back to as a young married person. At least Dr. Ting knows me and cares about me, she said. And she was right.

This morning I headed out of the hospital with more than a small amount of guilt for leaving my guy. I had to be there at 8:30 for a 9am appointment (paperwork). Then I went back to the room and interviewed with the nurses. Then they said the doc would be there "in a few." Yeah right. It was like 45 minutes later when she came in! I see that as something that could be good or could be bad. If the doc gives me all the time I need when I'm with her, I don't mind waiting. [I got back to the hospital at 1:00, by the time I finished the appointment and went by the house to feed the dogs.]

I start telling Dr. Ting my story. Last night I made a list of all the symptoms I could think of. Everything. Even embarrassing stuff I hadn't told anybody else about yet. I started getting my hopes up when she said "start talking" and then proceeded to type everything I said into the computer. After I was done she said, "You've been to that many doctors and nobody has given you an actual diagnosis?" "Nope." Finally, after 5 years, she said the words I didn't want to hear, but did want to hear. "You very obviously have fibromyalgia." See, I knew that I had most of the symptoms associated with Fibromyalgia, but the doctors I've been to would not go there. Like I said. They would say it sounded a lot like fibro, but they thought it was probably because of stress or being overweight, etc.. So for me, it was very validating to get a diagnosis. She validated me even more when she told me she knew that I was feeling real pain, that really affected my life, and it wasn't all in my head. She agrees (as do I) that stress affects the severity of symptoms, but it DOES NOT create the disorder!

What's interesting is that I learned some of the particular pains I feel, mixed with other particular pains, are only seen together in fibromyalgia patients.

The other side of this issue is how exactly to treat the pain I feel. I've been on so many medicines. I got to the point where 3000 mgs of ibuprofen a day wasn't making a dent in the pain. I've tried Aleve. Mingraine medicines. Arthritis medicines. Even 2 Fibromyalgia medicines. Some of them don't work. Others of them work at first then stop working. But the scariest ones are the ones that I have had poor reactions to. I had a horrible reaction to one of the two fibromyalgia medicines I've tried, so I had to stop that. The other one did nothing--might as well have eaten a tic-tac.

Today I got 3 new meds to try. A very new fibro drug that works to stop joint pain. Another drug that works to stop nerve pain. These are the ones that could actually make a difference in my quality of life for the long term. They aren't pain-killers like vicodin. They work differently. For the short term, she also gave me a script for Tramadol--one of the few pain killers I've tried that give me some degree of relief. She gave me a larger dose than I've ever tried before though, so it might be really good. In fact, I would say that after one larger dose I am already on cloud nine. My most acute pain for the past three days was gone for 4 whole hours today! That is HUGE!

I'm sure that many of you who have known me for years see how huge I've gotten. I am heavier than I have ever been before. The ironic thing is that all this pain and fatigue started right after I worked my butt off to lose 50 pounds. So I've always known that people who tell me the pain would go away if I lose weight were wrong. The weight was put on because of the pain! I've now put on 75 pounds since 2004/2005. To give you some idea of the pain... during the 45 minutes I was waiting for the doctor, things got very uncomfortable. When I was sitting my tail bone and another area were in so much pain that I would stand up. But I have planter's fasciitis so severe (verified by the foot doc) that it is really painful to stand as well. So I sat, then I stood, then I sat, then I stood, for the 45 minutes. No relief. Lay down you say? That's when my hip pain kicks in (although laying down gives me the best relief). So how does an overweight person lose weight when their foot doctor tells them no more than 5 minutes walking/standing at a time if you can help it (yeah right!)? And when you have fibromyalgia you don't get the good pain-relieving endorphins that regular people get with exercise. It actually does make your pain much worse. At any rate, now that I have hope for less pain I will also hope to be able to exercise so that I CAN lose weight.

You can read about the symptom of fibromyalgia HERE. I was shocked how many I have, right down to reacting negatively to the meds that might help me! A hint for you women out there. The most embarrassing pain listed in the symptoms? That's the one that was a big key in me getting the diagnosis.

There you have it. I got a diagnosis. I got validation. And I was given hope for a more pain-free future.

Anita