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.
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