I’ve coped with fibromyalgia for over 40 years, so I have learned a few things about it. I’ve also worried that, what with having pain all the time, if there was ever a pain that was serious (in origin, that is), that I might not know the difference. It didn’t really occur to me – don’t really know why not – that it might be other aspects of fibromyalgia that might mask something more sinister.
As I’ve noted recently, ever since the summer when I tried to stop hormone replacement therapy and learned that I need the estrogen as much as I need food and water, all the fibromyalgia symptoms have been exacerbated. Pain, fatigue, fibro fog were all up.
This past Wednesday I went for one of my quarterly check-ups. I had a list of things to discuss with the doctor. I informed him when he came into the exam room that I wasn’t going to be one of his easy visits this time.
I told him that, although I went back to estrogen the 1st of September, my pain level had not come down to where it was before I stopped the estrogen. Even worse, my energy level was still sinking. I was getting short-winded going up small hills or the cellar stairs. He said I looked pale. I was surprised by that. We decided to start with some blood tests. I’ve had thyroid issues in the past, so he ordered tests for that, as well as tests for a couple of other things and the usual CBC panel.
We discussed the fact that I’ve been taking Prozac for the pain for a while now and perhaps we needed to change that medication. He suggested something that works on both seratonin and norepinephrine – like Effexor. I reminded him that we had tried that one with really nasty side effects – increased pain, depression and suicidal thoughts when I had never had those before. Effexor frightened me. So he suggested Cymbalta. He said he’s had good results with it with a lot of his fibromyalgia patients. I agreed to try that and so far, so good. The pain is back to a manageable level and my thinking is much clearer. I wake up alert again.
I asked him about Lyrica. I told him it wasn’t that I wanted to try it, but that I wanted his opinion so that I could respond to friends and family who suggested it as a “cure” for fibromyalgia. My doctor said that he doesn’t like Lyrica for fibromyalgia, primarily because it seems to cause added drowsiness, which people with fibromyalgia often have more than enough of already. He said Lyrica is a drug primarily for the pain of diabetic neuropathy. It can sometimes help with fibromyalgia pain but the trade off usually isn’t worth the small improvement. He also told me he thinks Lyrica is “a drug without a real use that the drug maker is trying to find uses for, however remote, because of all the money they spent developing it.” That’s why they are advertising so relentlessly. If they can create a demand for it from consumers, the doctors will prescribe it and they’ll be able to recoup their investment. Wow – a straight answer from a doctor!!
Anyway, I gave up some blood and went home with the Cymbalta samples. The Cymbalta actually seems to be making a difference. My pain level is back down to mostly manageable and I’m sleeping better again.
Imagine my surprise when I got a call from my doctor the very next day. Usually it takes several days for him to get the blood test results and call me with them. I thought overnight was a bad sign – and I was right.
The doctor told me the iron was low. I asked what the numbers were. Normal averages between 11 and 15. Anything below 10 is considered low. My result was 4. Whoaaa….. that’s really low!
I asked what would cause that and what the effects are. The effects were understandable – since iron is needed for healthy red blood cells that carry oxygen to the cells of the body. I had many of them – paleness, fatigue, short-windedness, palpitations of the heart, and general lack of interest in life. I had been experiencing many of these things but had attributed them to fibromyalgia.
I am scheduled to see a gastroenterologist next week. We need to determine why I am so low on iron. I’ve had a hysterectomy, so it certainly isn’t excessive menstrual bleeding. My doctor is concerned that, having taken prescription strength ibuprofen for so long (though I try to take as little as possible), I may have bleeding somewhere in my GI tract. Hence the visit noted above and possible tests to follow. Don’t know what we’ll check on after that.
For the time being, I’m taking an iron supplement with vitamin C (which aids absorption of iron) called Vitron-C. The box says it’s less likely to cause constipation (something iron supplements can do), so that’s good. I’ll let you know if it’s true to it’s packaging.
In the meantime, I’m taking naps, avoiding stairs and taking my new medicines. And I’m writing about this to remind everyone with fibromyalgia to see the doctor right away if you start experiencing things that you haven’t felt before. It may be just the fibromyalgia finding a new way to make trouble in your life. But it could also be something else that’s needs attention.
I think sometimes that those of us with fibromyalgia get to a point where we just assume everything comes from that condition and we get sick of seeing doctors who can’t do very much for it. We have to remember – sometimes a pain or a wave of fatigue is fibromyalgia, but sometimes it’s not.
See your doctor regularly. I’m glad I did!