"Are you in any pain today?"

It's such an innocuous question, isn't it? "Are you in any pain today [or "right now"]?" You hear it every time you go to the doctor, or at least I do. I can't remember not being in pain. It's been years if there ever was a time. Right now, my hands hurt, my neck and back hurt, and I have a vague, all-over ache. On top of that, I have a spring cold and/or allergies that have caused a sore throat. A couple hours ago, when the intake nurse at the clinic here asked me if I had any pain right then, all I could say was "no more than usual." Actually, it hurts like hell to walk on my right foot, but as I wasn't walking at the time, it was fine (and it was reasonably OK walking with the surgical padding, anyway). (As a side note, it wasn't a wart at all, thank the gods; just a very nasty splinter that my immune system had pretty much managed to destroy, but there was a pocket left, around which was a great deal of inflammation that made it hurt to walk. I am more than pleased--no liquid nitrogen + no strange skin viruses = happy Jack. To be honest, I can watch surgery more easily than I can deal with the thought of certain skin conditions; warts and ants squick me out seriously).

Anyway, what does a chronic pain patient say to "are you in pain today?" For a checkup or a visit related to the chronic condition, the truth is relevant, but for a specific, acute problem, don't the other pains cloud the issue?

In what other ways do Fibromyalgia and other chronic conditions get in the way of treatment? We don't always respond the same way to medications or treatments; physical therapy and chiropractic care can either do wonders or backfire severely. Doctors may shy away from us entirely, or overprescribe varying protocols and cause medication interactions or overdoses. And gods forbid we go into an office having done our homework or research; in my experience, most doctors hate prepared patients (the good ones don't).

Post a comment below on whether you've ever had pain cloud the issue when you needed a specific problem addressed by your medical provider.

Sacred

Edit: It's not a wart--just a nasty splinter and an overreacting immune system.

So, I have a plantar wart. I had an HPV infection of this type over 20 years ago--my sister and I had warts on our toes, having been infected at the swimming pool by my grandmother's house. Anyway, this time the pool may have been involved again; at any rate, that's where the symptoms started. I thought a rock or splinter may have become embedded in my foot, but when after 3 days it was clear that it wasn't behaving as a splinter (and it hurt like mad to walk, being on the exact spot in the middle of my heel that bears most of my weight when standing or walking), I went to have it looked at. Naturally, the clinic is short providers, so I had to go to urgent care in town; by the time they diagnosed it but couldn't treat it, it was too late for me to get a referral from the clinic, so I have to wait until Monday to get treatment in the works.

The genius doctor assured me that this kind was not contagious or transmissible, but of course, a quick Google assures me that it can be, even if not extremely so. (actually, that link suggests to me that the pool is a likely culprit). Anyway, because it is in a spot that is causing my whole heel to become irritated, I was told that I was under no circumstances to do water aerobics until I get this treated, and I should stay off it as much as possible. Since I work on my feet, that wasn't an option; I asked what else I could do. I have to pad the area as well as possible--this means surgical pads and tape, then thick padded socks, then insoles in my shoes.

I'm generally known for my awesome funky socks. I'm used to new things going wrong with me, well, pretty much all the time. But man, padded, diabetics' socks? Don't mess with my socks. Some things are sacred.

To hide, or not to hide?

As a person with an invisible disability, it can be frustrating if not infuriating to try to explain what's wrong, to feel at your very worst, and to hear "but you look fine!" Almost as frustrating is the hopeful, well-meaning acquaintance who remarks, "you look good/better today." It's enough that sometimes, it doesn't seem worth it to try to explain.

How do we deal with that frustration? One way is to resolve to "look fine" all the time, and never even mention that we're ill. If we need a little more rest to get things done, or are a little slower sometimes, so be it. Of course, this can cause problems when we hit those periods where it's obvious to all and sundry that there's something wrong with our bodies.

Another way to deal with it is to give in and stop making any effort to hide how we're feeling. One down side to this is that we're seen as hypochondriacs and whiners. Another is that it's boring. Being ill becomes our one focus.

A decent middle ground is to not make it a topic, but to be honest with people as you start to know and trust them enough to converse with them personally. Generally, people are understanding and won't make a big deal of it if you don't. My "fallback" middle ground is to make a joke of FMS and arthritis--"this is all my Fibromyalgic ass can take right now."

What do you do, or say? Who around you knows you have Fibromyalgia?

Writing, art

I wrote a rap earlier, and I have no idea why. I can't rap to save my life. I sound like a white girl from the suburbs trying to rap (I'm actually not from the suburbs, but my family isn't nearly as, err, urban as the area of Toronto that was my first home).

I'm doing badly this week with pain all over. I managed to convince the doctor to give me Ultram, but somehow, he's convinced that working on one type of pain at a time is the answer, so I did not get the cortisone shot in my neck that I also badly needed on the grounds that the pain in my back is worse. What's that about?

Anyway, like I said, I'm doing badly. I'm a straight A student and pulled Cs or Ds on my quizzes this week. Nearing the end of the class, this is not what I needed. But just getting through work with a back brace and a wrist brace and a pronounced limp is all I can manage, and not even that without crying. I'm not up to my standard in any sense, and the best advice I can get is "keep moving." I'm at the point where my body won't do that, and then what? My wrists and fingers are swollen and my brain is near shutdown. I had to admit that to my manager this week and it's starting to become obvious.

I was going to share the whole rap, but it's explicit content and might offend some. So, an excerpt:

You tell me you know how I'm feelin'
but a friendly hand can send me reelin'
'cause the pain is real, not deep inside
even though the pain I know I'm s'posed to hide

What helps take your mind off the pain when you have a few minutes of down time? Writing? Singing? Music? Besides the angry FMS rap, which hit my brain out of the blue, I bought a Doodle Diary at work. I may doodle with more purpose than the diary assumes, but still, it's soothing (minus the detail that my hands hurt more when I hold a pen--I've had serious hand swelling lately). Meditation, especially water meditation, can also be helpful, though breaking through the pain cycle to reach the right state is difficult on really bad days.

May you have a pain-free hour today!

Namaste,
Jack

A bad spell, and

On a personal note, I'm going through a rough patch right now. My fingers object to me doing almost anything, my neck and back are screaming constantly, and I feel worse rather than better after working out. I'm creaking and in pain, and I'm trying desperately to hold it together with my spouse going TDY in a few weeks. The kid's therapy will be interrupted and I need to try to coordinate another therapist being able to see him across the country. I need more than ever to be two people, and I'm too tired and in too much pain to be even all of one.

OK, thanks.

Aside from that, there's something important I'd like to bring to your attention. As most of my readers (both of you) know, many pain doctors are very reluctant to prescribe pain medication. They cite supposed dangers of pain medication (though opioids taken correctly are less dangerous even than the "innocuous" carrier drugs many of the mildest are paired with, ibuprofen and acetominophen) and threat of addiction, or worry that patients with chronic nonspecified pain like Fibromyalgia may be faking to get drugs that make them high (there are far easier ways--if I want an illicit high, it would be far easier and more effective to score some marijuana, but I'm generally a fairly law-abiding citizen).

What doctors need to know is that recent research shows that there are dangers to leaving chronic pain untreated. In their study "Beyond feeling: chronic pain hurts the brain, disrupting the default-mode network dynamics," several Northwestern University doctors discovered that under the constant input of chronic pain, the brain rewires itself, bypassing some critical areas involving memory and emotion. Another study by the same team shows that brain mass is actually lost by patients dealing with long-term chronic pain, particularly in areas dealing with pain perception and response and with interpreting data and decision-making.

Patients with long-term chronic pain have long known that "brain fog" is one of the results of living this way. Now it turns out that making us suffer through it is causing brain damage, as well.

Fatigue Hell

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.

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).

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:

• 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

Fibromyalgia for Dummies is a great overview reference and starter book for both patients and physicians who are interested in learning more about FMS. 4 stars/5.

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).

Trigger Points vs. Tender Points

Occasionally, especially when you talk to a lot of FMS patients (or read a lot they've posted to the internet), you'll notice a common confusion: they'll refer to having a certain number of "trigger points" for diagnosis. This is a common confusion between two similar terms that should both be familiar to Fibromyalgia patients.

"Tender Points" (TPs) are eighteen points on the body that are very sensitive to pressure. Pressing gently on the spots (just enough to see white under the fingernail, or about what you'd use to press a piano or keyboard key) causes serious discomfort or pain. Having at least 11 of the 18 tender points on both sides of the body is the major diagnostic criteria for Fibromyalgia Syndrome.

Most Fibromyalgia patients also have "Trigger Points" (TrPs). Trigger Points are not a symptom of Fibromyalgia, but of Myofascial Pain Syndrome (MPS). The worst thing about TrPs to a patient is that they are not only painful themselves, but they can "refer" pain along nerves and muscles so that pain can be felt far away from the problem area. Unlike Tender Points, Trigger Points can be felt from outside as "knots" in tight muscles. Also unlike Tender Point discomfort, the pain of TrPs can be directly treated. Biofeedback and various forms of massage have varying degrees of success with treating TrPs. Various needle techniques, from acupuncture to injections of lidocaine and saline, have also been successful for some patients.

A simple at-home treatment that may help some patients with TrPs is tennis ball massage. The easiest way to use this is just to lie down with a tennis ball under the TrP. If you are not sure exactly where that is, put it in the right area and move around slowly until it feels like the right place. Then, I like to rock back and forth slightly to loosen the muscle and ease relaxation, but that isn't totally necessary. Once you are lying on the tennis ball (and have rolled on it to massage the muscle if you chose), just relax on it as much as possible until the pain has faded to a bearable intensity. Later, use heat, rather than ice, to keep the muscle relaxed; ice can cause muscle tension.

Small Comforts

The most important aspect to managing chronic pain is figuring out what you need. In a lot of little ways, you can make your days easier to get through on those days when getting through is the best you can hope for. I keep a sock and a small pillowcase full of dried rice in the freezer (they also make excellent hot packs when microwaved). There is a pillow in the chair where I always sit and a blanket on hand (because I get cold easily). I keep a lot of pillows around me, because I can manipulate them into soft support so that I am in the least-uncomfortable position I can manage. Other people might always need a hard chair or a hard surface.

What's on your feet may also be important to your general comfort. DH's stepmother recommended the 2oz. Miracle by Profoot, an insert I like a lot. A lot of Fibromyalgia patients have oddly-shaped feet (often causing or caused by Morton's Foot or Morton's Neuroma), requiring orthotics or well-fitted supportive shoes. I hate the feel of shoes on my feet and generally feel better barefoot, but as that's generally impossible (work, errands, and a very short summer have conspired against me here), good insoles help some, not only with foot pain but with leg and back pain.

What makes you feel good? Is there a "trick" you use, or a certain type of mattress or chair you can't live without?

The Poo Post

One of the most frustrating and embarrassing syndromes that frequently accompanies Fibromyalgia is Irritable Bowel Syndrome, or IBS. The NIH definition of the disorder:

Irritable bowel syndrome^* (IBS) is a “syndrome,” meaning a group of symptoms. The most common symptoms of IBS are abdominal pain or discomfort often reported as cramping, bloating, gas, diarrhea, and/or constipation. IBS affects the colon, or large bowel, which is the part of the digestive tract that stores stool.

IBS is not a disease. It’s a functional disorder, meaning that the bowel doesn’t work, or function, correctly.

Some IBS sufferers have chronic diarrhea. For some, any outing means scouting out the bathrooms and a quick escape route. Outings sometimes end early due to embarrassing accidents, leaving young-to-middle-aged sufferers considering protective undergarments. In milder cases, a patient with IBS with diarrhea will still pass loose stools 3-4 times a day or more, or after every meal and snack.

Gas, bloating and cramps are probably the most embarrassing aspect of IBS. It's harder to hide gas than the other aspects of IBS; attacks often come without warning and in inconvenient public places. Chronically bad gas can lead one to feel like a social pariah.

Others have chronic constipation. Chronic constipation is probably the most painful aspect of IBS, often accompanied by cramping and an urge but an inability to pass a stool. Stools passed are hard and infrequent. Stool can back up in the colon and cause discomfort, especially after eating. Nausea and reflux or vomiting can be related to constipation.

The insidious thing is the "and/or." It is possible to suffer alternately from diarrhea and constipation. This makes IBS particularly difficult to treat medically, as the treatments for each exacerbate the other.

The direct causes and mechanism of IBS are unknown, but there is thought to be a genetic component. Diet and exercise make a difference to frequency and consistency of bowel movements; a diet high in fiber and low in empty starches can help some IBS sufferers.

As with any other time a part of your body "doesn't function correctly," try to learn what works for you to let your body function in the healthiest, most comfortable manner possible. Gentle exercise and lots of fresh fruits and vegetables may help. If not, don't feel awkward bringing it up to your doctor. He's heard it before.