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.

Heard at the doctor's office...

My pain doctor said to us yesterday of a procedure, "this isn't necessary. It's a quality-of-life issue."

When quality of life is considered more important than quantity of same, particularly by doctors who are supposed to specialize in the treatment of pain, then we will be making real strides in medicine.

Pardon my lack of a more substantial post for the weekend; I am in a lot of pain and am physically worn out from work, school, and pain (plus driving and the little bit of housework I do--I haven't done enough of that, and I hope we don't get in trouble because the driveway isn't shoveled).

Herbs, Supplements, and You

I had an interview for a management position I have little hope of obtaining right now (not enough management experience, a preference for hiring outside, no one else to fill my current position, but I know I could do this job), and the manager was surprised to learn that I deal with this since I'm so conscientious about showing up. I hope I do not too badly color the impressions of people who realize how functional I am; how hard I fight every day to be fully functional does not show, and using me as a yardstick by which to measure other patients who do not manage to do as much every day is unfair. My life has been different, and I have learned to cope in different ways and cry in private. When the subject of Fibromyalgia comes up, everyone seems to have a friend or relative with this disorder. Sometimes it's sympathy--"Oh, my god, my aunt's friend's cousin's former roommate's brother's daughter has that! It's really painful, right?" (Yeah.) More often, it's "Oh, my cousin/aunt/friend has that. X, Y, and/or Z really help." (The worst is "Foo had that, but was cured by X, Y, and/or Z.") X, Y, and/or Z, in these cases, are usually various herbs and obscure supplements.

On alt.med.fibromyalgia a decade ago, people were selling cures with amazing regularity. There was a solid group there, and we would attack the "snake oil salesmen." Oddly, I have since seen actual snake oil touted as a cure for Fibromyalgia. Herbs that I know have helped some patients include Cat's Claw, Devil's Claw, Valerian and Melatonin for sleep, and St. John's Wort. Here is a good rundown on herbs used to help some Fibromyalgia patients. I won't cover the myriad medications and standard treatments in this post--I'll save the various protocols for another day. FMS patients should include a good multivitamin in any regimen. Other supplements that work for some patients include MSM, magnesium/malic acid, SAM-e, various nutritional supplements marketed for FMS, Kava Kava, and Co-enzyme Q-10. Remember that any herb or supplement is a drug. Research possible interactions with medications you are already taking and consult your doctor before starting any program or taking any herb or supplement.

A more personal take: my "guilty" supplement is tobacco. If I take too much, my fatigue is far worse than it normally is. But one to two cigarettes a day (I allow myself one and smoke about half, occasionally as much as 2/3, of it) gives me a five-minute respite, when I just feel a numb tingle all over instead of pain. My overall pain levels stay lower, too (on average, 1 increment on the 10 scale, I guess). I told a friend that, and she recommended Relacore as a supplement, saying it contained tobacco in some form. I don't find that I get those benefits, but my energy level does stay a lot more even over the day. I still have low-energy days, but at least they're more consistent instead of dealing with crashes.

Living (and parking) with an invisible disability

One of the hardest things about living with Fibromyalgia and other chronic pain/fatigue disorders is "You look fine to me" syndrome. This is a syndrome every sufferer of an invisible illness deals with, though the symptoms manifest in our friends, relatives and acquaintances rather than in our bodies.

Many disabilities cause visible physical degeneration or an outward visible sign, such as a wheelchair or leg braces. Many others, however, make it difficult to walk very far or function very long without serious pain or fatigue. Such patients do need some accommodations such as handicapped parking permits or even to sit down and take breaks while doing simple household chores (my father's parents and my ex-husband never lost opportunities to tell me how lazy I was, generally on my worst days, for sitting down for a little while).

I work on my feet for eight hours a day and have done so since I re-entered the workforce five years ago. I push through a lot of pain and fatigue to manage that, and sometimes, all I can do is lie down and cry when I get home. Sometimes my heart pounds at any effort, and I do my best to spend more time doing paperwork or to sit and sort books instead of walking around with them (and I make sure I have my cart to lean on if I need it). Not every person with FMS and/or CFS can do that much. Other disabilities are invisible, too; I have a sister with Pseudotumor Cerebri, and she "looks fine" unless you're close enough to see all the surgery scars on her head, neck, back and abdomen (all covered by hair and clothes) or the LP (spinal tap) scarring on her back from the hundreds of therapeutic spinal taps she's needed between shunts. When she walks far or overheats, her intracranial pressure shoots up, causing her a headache worse than a migraine and threatening her vision. Of course, she "looks" fine, so deserves no accomodation according to people like those who made the comments and "fraud reports" highlighted here.

I haven't had a parking placard in years, and often used a cane back when I did because of pain in my right hip and leg. Cortisone injections in a nerve in my back help this some, but I still limp on that side when the shot starts to wear off. My husband and I both exercise regularly in low-impact environments, and if I can stay on my feet at work, I can more or less make it to the car. But judging others--whose doctors must agree that the accommodation is necessary--is wrong. People with invisible disabilities shouldn't be subject to the stare or rude comments from friends, family, or strangers. I may not look sick, but I feel sick every day of my life.

Sensitive

This modern world is full of conveniences. We have automatic everythings and easy take-out food right from the supermarket ("supermarkets" are themselves, of course, a major modern convenience). One of the greatest modern conveniences is at your fingertips right now, or you wouldn't be reading this. I'm no luddite; I believe that progress is a good thing. Like all good things, though, the modern world has its drawbacks.

One of the drawbacks is a non-specific syndrome known as MCS, or Multiple Chemical Sensitivity. Most people will go through all of life without being hypersensitive to any sort of chemicals. Others will have isolated reactions to certain chemicals. For the person with MCS, it sometimes seems as though anything, or even nothing at all, will set off symptoms. The smell of certain cleaning products will cause rashes, headaches, and other allergic symptoms. When you can't wear your jewelry or any clothing with a zipper and can't be around when anyone's baking because the smell of some spices causes you a serious reaction*, you start to feel that you're (1) allergic to everything and/or (2) crazy.

MCS seems to be related to some other chronic disorders. Many Fibromyalgia/MPS and Chronic Fatigue Syndrome patients report that their original symptoms started after a trauma or illness. For a small subset of those patients, the illness that first triggered that cascade seems to have been related to MCS (as with Gulf War Illness patients who are thought to have become Fibromyalgia patients and people whose illnesses were related to Sick Building Syndrome). Illness begets more illness.

Symptoms of MCS can be any allergy-like symptoms, from nasal allergy symptoms (rhinitis) to contact dermatitis. They can also include general malaise and worsening of any other chronic illness a patient may have.

What can you do about your MCS symptoms?

1. Try to figure out, as far as possible, what your triggers are and eliminate them from your life. If chlorine bleach sets you off, use bleach-free cleaning products and try to swim in salt-water pools rather than chlorinated. If cigarette smoke is a trigger, do not spend time in heavy-smoke areas.
2. Consider that food sensitivities may be part of the complex constellation of symptoms and syndromes that seem to have taken over your body. Consider an elimination diet. Keep a food diary in conjunction with your symptom diary even if you are not going for elimination; you may find that those horrible dizzy spells are caused by MSG** or that your chronic migraines are better on weeks when you don't eat peanuts.
3. Use detergents, soaps, lotions and cosmetics that are hypoallergenic and, as far as possible, free of dyes and chemical perfumes.
4. If you have a skin reaction to any item of clothing, wash it with a detergent free of dyes and perfumes. If you have a reaction again the next time you wear it, get rid of it. Put it straight in the "charitable donations" bag or box, even if it looks really amazing on you and you will never have a shirt/skirt/pair of jeans as wonderful again.
5. If you're sensitive to jewelry/metal on your skin, consider having all snaps and zippers on clothes you just have to keep replaced with metal-free buttons, unless you can find surgical steel snaps/zippers.

*Personal Story: I always had some sensitivity to cinnamon--I would always get sores in my mouth when travelling, which I eventually pinned down to the fact that I would always buy cinnamon gum when travelling. I started working in a Barnes and Noble Café and started having allergy symptoms all the time: rashes on my hands and arms, trouble breathing/worse asthma symptoms, constant sinus headaches. I soon pinned it down to cinnamon once exposures to concentrated sources of cinnamon--the Cinnamon Sunset tea and actual cinnamon powder--caused me a full-on anaphylactic reaction. The rashes were the result of Chai splashing up on my arms when working at the bar. With regular exposure, the reaction worsened to the point where even smelling cinnamon scones baking from across the store or talking to a customer who's chewing cinnamon gum has caused my tongue and cheeks to swell.

**This is my husband's experience--MSG is bad for him, and when he really craves a food with MSG to the point where he would rather have it than avoid the reaction--dizziness to the point of collapsing--he has to wait until he does not have to do anything for a couple hours afterward.

"Just Depressed"

Many patients with chronic pain dread those words. "You're just depressed" and "It's all in your head" are many doctors' ways of dealing with pain they can't see. Then, as with so many other attempts, we talk to counselors who eventually realize that though they might help us cope better with our lives for a while but that if we're more depressed than other people, it's more an effect of the constant, unrelenting pain than a cause.

There is, however, a depression/chronic pain cycle or a stress/chronic pain cycle. Stress will make the pain worse; worse pain will make the stress worse. Most of the time, though, pain is independent of depression in the sense that treating any depression does not necessarily help with pain (some medicines treat both for some patients). For chronic low back pain patients, antidepressants have been shown to be no help, but they are still frequently prescribed by doctors who cannot believe that pain without an obvious organic cause can be physical rather than psychosomatic.

If you're running into a wall with the "all in your head" people, remember: you are not alone. It is not all in your head. Do your best at everything you can, then work at being comfortable and in as little pain as possible.

Menthol and other topical analgesics

I have cervical disc disease among my other problems. I'm far overdue for a cortisone shot, having had to reschedule twice. I slapped a menthol patch on it, and it feels cold deep down. Cold is better than pain in this case (in my fingers, below about -15F, cold IS pain). When I have really bad sore spots, I find some temporary relief of the worst pain using Salonpas patches or the blue ice gel. Both have menthol as the only active ingredients and both are dirt cheap at your local mass merchandiser.

There are a lot of other topical analgesics, with active ingredients including:

• camphor
• salicylates
• eucalyptus oil
• cinnamon
• various forms of mint
• capsaicin (the compound that makes chile peppers hot)
• lidocaine and other numbing/anesthetic agents (EMLA is in this group)
  
• NSAIDs (non-steroidal anti-inflammatory drugs like Corprofen)
• eucalyptus oil
  

Some of these may be very effective for you. Some may not work at all. Some may cause you serious reactions. When trying any new topical medicine, it is important to remember that it is medicine (even if it's all natural/herbal) and is entering your body. If you take any medicine orally that's related to or that has known negative interactions with an ingredient in a topical medicine, do not use that medicine even if you do not think it can be harmful (did you know it was possible to OD on eucalyptus oil?) Even if you are not worried about interactions, try any new topical medicine on a small patch of skin (a small dab, rubbed out to about the size of a quarter/2cm diameter) on your forearm or other inconspicuous spot. If you want to be properly cautious, wait 24 hours. If the area turns red or rashy or starts burning in that time period, you don't want to use this medicine. If the smell of the medicine makes you feel bad (worse than simply "smelling something unpleasant"), don't even do the test--you may have a severe allergy to an ingredient. I have a severe allergy to cinnamon; a friend of mine used a topical containing cinnamon on my husband and I had a bad allergic reaction from smelling it across the room. I've been doing better with airborne cinnamon on Zyrtec, but I still would not put it on my skin.

To sum up, topical medicines can be helpful for chronic pain, but be as cautious in their use as you would with any new medicine.

Cortisol and CFS

A friend of mine recommended Relacore, which is supposed to help with cortisol levels. While I haven't had help with pain from it, I have noticed that my energy levels are more even through the day when I take it. Now, a recent study has shown that women with CFS wake up with lower levels of cortisol. I don't know whether I've lost waist inches--I stay overweight, and I do not overeat, anyway--but maybe it does help with the energy. I think I have fewer days on which I feel like I'm swimming through Jell-O(r) to move or get anything done.

Some other interesting links:

• 5 things you didn't know about Chronic Fatigue Syndrome
• The Spoon Theory

Misleading Health Headlines

There were big headlines on MSNBC today warning that pot is "A Bigger Cancer Risk than Cigarettes!" I'm guessing that smoking anything regularly is a cancer risk, but anyway, their point is that smoking one joint is around equivalent to twenty cigarettes (if you read the article instead of getting a headline stuck in your head like a lot of people seem to), mostly because it's smoked unfiltered and all the way down to the end. On the other hand, (1) most joints are shared, so one person isn't smoking the whole thing, and (2) the average casual smoker may not smoke even part of one joint in a day, while most smokers smoke a pack or more.

When you get all the way down the article, you see that this is a study of 80 people with lung cancer, and that they have deduced that smoking more than one joint per day leads to a fivefold increase in lung cancers. Since everyone in the group had cancer, with no control group, I'm not sure how they deduced the relative risk.

This is not about marijuana, folks. It's about the Mainstream Media putting out alarmist headlines then burying the facts in the part of the article by which most people have stopped reading and the rest are skimming enough to miss it. These people are controlling our elections. They're feeding "wars" on concepts that affect our politics, our healthcare, even the forms of entertainment we use to escape.