It's Not Your Fault

One of the things that makes fibromyalgia so difficult for so many is the way the people who suffer from it are treated. There are lots of people, ignorant and mean spirited though they may be, who take great delight in telling fibromyalgia sufferers that it is all in their head, that they are malingerers, that they just want attention, that they are wooses. You'll find this all over the Internet, often tinged with a strong dose of misogyny as well. Even some doctors are on board.

Especially when sufferers are just starting to do their research and trying to get a handle on all of this, these claims are very hurtful. It cuts deep because fibromyalgia is so strange, so inexplicable. You suffer from pain for which there is no cause. You can't help but wonder if this is all in your head. What is happening to you makes no sense. It is as if your body has betrayed you. You begin to feel as if it is somehow your fault.

The fibromyalgia deniers are not well-meaning. They seem to take joy in attacking the people who are already suffering. But then, you have friends and family who all want to offer advice. They are well meaning. They really do want to help. They encounter a snippet of information here and a snippet of information there and they are anxious to pass it along. They want you to be better.

It usually comes down to some variation of this advice: I heard that someone did this and it cleared up their symptoms. You ought to try it and you might be all better.

They are grasping for a cure and they want to pass it on. If only you try this, you might be all better.

It doesn't work that way. There is no cure for fibromyalgia. There are cases of spontaneous remission, but there is no cure. There is no drug you can take, no change you can make in your diet, no lifestyle change, there is nothing you can do to cure yourself. You can do things that might make you feel better, but there is no cure.

If you have fibromyalgia, it is not because you did something. It is not your fault. It is just something that happens to some people. The advice that people often give you unintentionally dumps responsibility for the condition back on you, as if you could cure yourself if you would just follow their advice.

I constantly have been given advice, usually stories about someone they know who tried something and it cured them. I can't know whether this person was even properly diagnosed, or if they just went through a period where their symptoms were diminished- something that happens normally to many regardless of what they do. These are second hand stories that medically mean nothing. Lots of people are searching for treatments and for a cure. If something was actually working for a wide range of people, it would pop up on the medical sites that cover this sort of thing. It would appear on the fibromyalgia sites where people report their actual experiences. Nowhere has anyone reported an actual cure.

Here is what we do know helps. Get enough sleep. Get some exercise even though it is painful and difficult- just don't overdo it as that will makes things worse. Eat a balanced diet. Try to reduce stress. When you look at these things, they are lifestyle choices that are good for everyone. It is not surprising or a mystery that these help.

Everything else seems to help some people but not others. Could you have a food allergy made worse by fibromyalgia? The literature I've read seems to indicate that is very possible, and cutting out that food could make you feel better, but it is as individual as are food allergies across the general population. You'd deal with it like any food allergy. Can Yoga help? Maybe. Some people report that drinking green tea helps clear their head. If it is inexpensive, many things are worth a try. They may not offer a cure, but they might make you feel better. These all tend to be things that also help the general population.

If it costs money, though, I am a bit more skeptical. The problem is that there are so many supposed treatments out there that you can spend a fortune trying them all. If you have the money, fine. A lot of people with fibromyalgia who find themselves no longer able to work are in dramatically reduced financial positions, though. They have to be very careful how they spend their money.

Should you try FDA approved drugs for fibromyalgia? Absolutely. They don't work for everyone, but Savella made a huge difference for me. If your insurance covers it, it is worth a try. The advantage with an FDA approved drug is that someone has actually tested it to make sure it works. Most of the suggested treatments you'll find on the Internet, though, have not been tested. Some are out there as a scam. Some are just based on someone's word of mouth, and with no scientific testing and controls to rule out other factors, it is meaningless.

We'll talk about how quack cures work in a future entry.