The flip-side to almost any chronic illness is chronic fatigue. It's a symptom of your body being run down all the time, or of fighting through pain or other dysfunction to function at all, or both. The WebMD Symptom Checker lists 20 diseases with the general symptom "fatigue" (with "none of the above" for "made worse by..." and without degree of severity specified), from sinusitis to MS. Of course, FMS is on the list.
Interestingly, Chronic Fatigue Syndrome/CFIDS/ME is not on the list. It is a well-known disorder to FMS patients. CFS patients have fatigue with pain, while FMS patients have pain with fatigue, but many believe that they are essentially the same disorder, or are points on a pain/fatigue continuum that describes the spectrum disorder encompassing both.
Even to many of us who are in pain full-time, the fatigue is the worst of this life. It seems to lead to total mental breakdown. Thought processes and emotional controls both weaken, making every aspect of life more difficult.
All this, of course, is a roundabout way of saying that I'm utterly drained and fatigue has gotten the better of me.
Thursday, March 27, 2008
Friday, March 21, 2008
Is the cure ever worse than the disease?
This week, millions of arthritis sufferers heard that a gluten-free, vegan diet would alleviate their symptoms. Many surely rejoiced and headed to stores to stock up, but many others surely either took the news as disheartening or immediately dismissed the diet as too hard or too expensive to follow, or both. An arthritis sufferer on a limited income or even a disability check may not have the means to buy gluten-free whole grains or to live on fresh produce.
The major problem I see with this study is that a "gluten-free vegan diet" was compared to a balanced diet that was neither, but they had no groups for one or the other. Are there studies asking whether a GF but not vegan, or vegan but not GF, diet helps?
The disheartening and difficult parts of this story:
1. It was shown that there was no improvement in symptoms or weight loss by participants eating a regular, balanced diet. If there is no point in striving for healthier habits and balance, some people will give up clinging to that last shred of trying for healthy habits.
2. It gets to the point where there is literally nothing we can eat. We're down to just organic produce, particularly locally grown. But wait--citrus fruits can interfere with medication and produce inflammation. Add in a few allergies and you're really scraping (I can't eat corn, which is a pretty common ingredient in GF/vegan food, and many people with nut allergies are also allergic to soy).
The major problem I see with this study is that a "gluten-free vegan diet" was compared to a balanced diet that was neither, but they had no groups for one or the other. Are there studies asking whether a GF but not vegan, or vegan but not GF, diet helps?
The disheartening and difficult parts of this story:
1. It was shown that there was no improvement in symptoms or weight loss by participants eating a regular, balanced diet. If there is no point in striving for healthier habits and balance, some people will give up clinging to that last shred of trying for healthy habits.
2. It gets to the point where there is literally nothing we can eat. We're down to just organic produce, particularly locally grown. But wait--citrus fruits can interfere with medication and produce inflammation. Add in a few allergies and you're really scraping (I can't eat corn, which is a pretty common ingredient in GF/vegan food, and many people with nut allergies are also allergic to soy).
Monday, March 17, 2008
Book Review: *Fibromyalgia for Dummies*
In general, I'm a fan of the Dummies series of books. I still run into people offended by the title, but they're generally a solid recommendation for anyone looking to learn more about a subject.
Fibromyalgia for Dummies is, as all the Dummies books I've read are, a solid overview of the condition. It's written by a clinician who has conducted a couple of the studies referred to in the book, and he tries very hard to be impartial and give good, concise information to help patients with FMS and their friends and family members. He more or less succeeds.
Fibromyalgia for Dummies has a lot of good information that both validates the symptoms and real pain from which FMS patients suffer and points out that there are a lot of other causes for similar symptoms. There is a lot of information about the hazards of self-diagnosis and self-prescription (almost to the point that the book starts to feel doctor-centric, its only major flaw--doctors get annoyed if you suggest a diagnosis because you have the same symptoms as your father's brother's nephew's cousin's former roommate? Doctors get annoyed if you have any kind of opinion at all, in my experience, so I don't see why them being bothered by something is my problem), but also, good information on different treatments and studies showing their effectiveness (or the lack of studies, or studies showing a lack of effectiveness beyond the anecdotal).
Besides treatments and evidence, Fibromyalgia for Dummies contains a great deal of information on possible causes, experimental treatments and those in development, and alternative treatments from supplements to TENS to acupuncture. It also gives a good overview of other syndromes associated with FMS as well as treatments and aggravating factors (if you come away from this book with nothing else, the mantra "avoid chocolate, alcohol, and acidic/citrus fruits" should be stuck in your head--those are aggravating factors for not only FMS but a lot of related conditions).
The other things Fibromyalgia for Dummies contains are:
Fibromyalgia for Dummies is, as all the Dummies books I've read are, a solid overview of the condition. It's written by a clinician who has conducted a couple of the studies referred to in the book, and he tries very hard to be impartial and give good, concise information to help patients with FMS and their friends and family members. He more or less succeeds.
Fibromyalgia for Dummies has a lot of good information that both validates the symptoms and real pain from which FMS patients suffer and points out that there are a lot of other causes for similar symptoms. There is a lot of information about the hazards of self-diagnosis and self-prescription (almost to the point that the book starts to feel doctor-centric, its only major flaw--doctors get annoyed if you suggest a diagnosis because you have the same symptoms as your father's brother's nephew's cousin's former roommate? Doctors get annoyed if you have any kind of opinion at all, in my experience, so I don't see why them being bothered by something is my problem), but also, good information on different treatments and studies showing their effectiveness (or the lack of studies, or studies showing a lack of effectiveness beyond the anecdotal).
Besides treatments and evidence, Fibromyalgia for Dummies contains a great deal of information on possible causes, experimental treatments and those in development, and alternative treatments from supplements to TENS to acupuncture. It also gives a good overview of other syndromes associated with FMS as well as treatments and aggravating factors (if you come away from this book with nothing else, the mantra "avoid chocolate, alcohol, and acidic/citrus fruits" should be stuck in your head--those are aggravating factors for not only FMS but a lot of related conditions).
The other things Fibromyalgia for Dummies contains are:
- Doctor information, such as:
- What kind of doctor do I need?
- What questions should I ask a new doctor?
- When should I look for a new doctor instead of sticking with the one I'm seeing?
- Information on who gets FMS:
- Mostly women
- Some men can get it, particularly in the case of some Gulf War vets and other PTSD patients
- Even children and adolescents can have Fibromyalgia
- Possible causes (genetic factors, PTSD/previous injuries, neurochemical imbalances)
- Information for friends, family members and loved ones
Wednesday, March 05, 2008
A brief note on faith
Many people with chronic illnesses turn to faith to support them. Others find that the church that has always been a "home" to them abandons them in times of most need. It has been said often that religion is a "crutch," but we are the sick and the lame, and sometimes we need something to prop us up--that is not a sin or a crime.
Nevertheless, there are many of us in chronic pain who have lost faith, who believe that a loving God could not create our bodies to break down and suffer so, would not make an infant ill and weak and in pain for all its short life only to be whisked away to heaven just as it seemed he would grow, would not make children so angry and sad that they think of doing violence to themselves. Seeing what people do to each other in the name of God, trying to enforce their version of faith on others when almost any modern version of faith would, if strictly true, have condemned most of humanity for all of time, has taken my faith in the church. Seeing that there were clearly men before belief in any God known to man today existed takes my faith. An article covering research that says that when Moses had his great visions, he was high on drugs, takes my faith. The fact that most of what the churches teach and believe is based on the teachings and words of Paul of Tarsus, not the great man he was purported to follow or the words of a God on High, takes my faith.
Might the Universe have a spirit? Might we all have souls that live on in some sense? I would like to believe that. But to me, God as we know God cannot be.
If faith comforts you and gives you hope, then keep God in your heart. But please do not judge the rationalists or try to enforce religious tenets as laws.
That said, I would like to share this awesome poster: The Golden Rule for Atheists
Edit: Which is based on this also-awesome poster, which makes some of my point: judge not, lest ye be judged has a similar basis (as does the Rule of Three).
Nevertheless, there are many of us in chronic pain who have lost faith, who believe that a loving God could not create our bodies to break down and suffer so, would not make an infant ill and weak and in pain for all its short life only to be whisked away to heaven just as it seemed he would grow, would not make children so angry and sad that they think of doing violence to themselves. Seeing what people do to each other in the name of God, trying to enforce their version of faith on others when almost any modern version of faith would, if strictly true, have condemned most of humanity for all of time, has taken my faith in the church. Seeing that there were clearly men before belief in any God known to man today existed takes my faith. An article covering research that says that when Moses had his great visions, he was high on drugs, takes my faith. The fact that most of what the churches teach and believe is based on the teachings and words of Paul of Tarsus, not the great man he was purported to follow or the words of a God on High, takes my faith.
Might the Universe have a spirit? Might we all have souls that live on in some sense? I would like to believe that. But to me, God as we know God cannot be.
If faith comforts you and gives you hope, then keep God in your heart. But please do not judge the rationalists or try to enforce religious tenets as laws.
That said, I would like to share this awesome poster: The Golden Rule for Atheists
Edit: Which is based on this also-awesome poster, which makes some of my point: judge not, lest ye be judged has a similar basis (as does the Rule of Three).
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