Treating Chronic Pain as a Two-Way Street

The nervous system has a system of checks and balances that ultimately determine how strong a pain signal is experienced by the individual. Different parts of the spinal cord and brain can play a role in either magnifying or weakening the pain signals traveling through them.

How a pain signal is amplified or dampened depends on a lot of factors (the person’s chemical makeup; genetics; personal history with accident and injury; emotions; context; whether or something else is happening at the moment that’s more important– aka why soldiers in battle can be shot and feel no pain).

One theory posits that chronic pain patients no longer have the same signal-weakening mechanisms that healthy individuals have. This is why they feel things, much more strongly, that might not really register to another person.

This is why, in many cases, I feel as though it’s misleading to talk about chronic pain as though it’s “in” the nervous system; that it’s something the nervous system is just coming up with on its own.

Instead, I think a lot of what chronic pain sufferers feel is pain signals which would be present in anyone– it’s just that in chronic pain sufferers, the pain signals are magnified, while other people might never register them consciously.

Now, this is not definitely not true all of the time.  Research has proven that physical injury/pathology is not necessary for pain.  After all, someone suffering from phantom limb pain where his leg used to be does not still have a leg to have a physical problem in!  But I do think it is possible that it’s the case, in chronic pain patients, more often than some authors realize.

So why don’t we try to stop those pain signals, which helping to perpetuate the chronic pain cycle, from starting in the first place?

Think about what it took to trigger the process of central sensitization in the first place. It’s usually caused by some kind of traumatic physical event. I think it’s a little idealistic to assume that people are always going to bounce back into mint condition three to six months after an injury/illness/surgery and not have any structural reasons at all for pain.

Yes, a tight muscle here or there might not be “painful” enough to consciously register to patients in the general population. But when we’re talking about central sensitization, the criteria for what is “significant” enough to become painful is pretty low.

And if the point is to get the person’s nervous system to calm down, wouldn’t it make sense to try to calm down the thing that’s happening at the very start of the whole signaling cascade? Why not approach the problem by dealing with both the end and the beginning of the cycle?

Now, I get why some treating professionals have downplayed the idea of approaching treatment from this angle. When you’re trying to convince a person that a muscle spasm or a trigger point isn’t “dangerous,” you don’t want to turn around and make it sound like you’re worried about it. If you alarm the person, you’re going to cause his or her nervous system to leap back into action, cranking his or her level of pain back up.

But what if it was possible to educate the patient on pain, and what is and isn’t dangerous, and explain that a muscle spasm isn’t really dangerous at all… while still acknowledging that he or she might be in less pain without the muscle spasm starting the cycle off in the first place?

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I’ve got a lot more thoughts on this subject, but I want to hear your thoughts.  Did you ever feel like you had a doctor, physical therapist or other medical professional who had great advice to give you about living with chronic pain, but didn’t seem to have much interest in looking for any potential physical reasons for your pain? I’m curious… let me know!

Clinical Trials Looking for Participants with Fibromyalgia

Have you ever thought about participating in a clinical trial?  I’ve never done it myself, but I’ve always wanted to.  It’s a way to talk to people who are studying your condition, receive free medical examinations/testing, free medication, and possibly earn some money.  On top of all that, you’ll be helping to further our current understanding of fibromyalgia.  

I was just Googling random things today, like I always do, when I came upon these sites which list research studies in need of participants.  Most of the studies listed are in the US, but there are several listed in other countries as well.  

It’s also pretty reassuring, for those who have been brushed off by doctors and told there is no such thing as fibromyalgia, to see how many different groups are trying to study it.  

US and other countries:

http://www.centerwatch.com/clinical-trials/listings/condition/218/fibromyalgia

http://clinicaltrials.gov/ct/search?term=fibromyalgia

http://www.fmaware.org/PageServer3958.html

http://fmcpaware.org/clinical-trials2.html

UK:

http://www.nhs.uk/Conditions/Fibromyalgia/Pages/clinical-trial.aspx

http://www.fibromyalgia-associationuk.org/information-packs-mainmenu-58/all-articles/41-medicalandtrials

Canada:

http://clinicaltrialscanada.com/patients/default.asp?pID=5

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There are definitely other sites that list this type of information, so if you don’t find anything close to you, keep looking!

Also, here is some background info on the ins and outs of participating in research trials, from the National Fibromyalgia Association.  

Hope this information was helpful!

New York Times: The Heart Perils of Pain Relievers

An interesting look at the risks that come from taking anti-inflammatory medications.

http://well.blogs.nytimes.com/2013/06/17/the-heart-perils-of-pain-relievers/?_r=0

The article quotes one doctor as saying, “If these drugs are making your life a lot better, that may be worth the risks.  But a lot of people will tell you, ‘I can’t tell if they’re doing anything, I just take them every day anyway.'”

I think a lot of people with chronic pain are told by their doctors to take these medications.  They are considered by most doctors to be a lot safer than some of the alternatives, which carry a risk of dependency and have a potential for abuse.

But NSAIDS have never really done much for me.  They help if I’ve  strained a muscle in a very acute manner, or when I’ve had a specific injury such as an ankle sprain.  But for ongoing, chronic pain where the original injury happened a long time ago, NSAIDS don’t seem to do much.

Don’t take NSAIDS just because your doctor recommended them.  Make sure they are actually producing a reduction in pain before subjecting yourself to the risks.

Inflammation, Fibromyalgia, and Deceptive Marketing Tactics

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Ok, so I wish I could stop going on angry rants on this blog.  But, ironically, some of my rants have turned out to be among my most popular posts… so I’m going to keep going with this one.

One of the things that bothers me most about the majority of the online content regarding fibromyalgia is the idea that fibromyalgia sufferers must fight inflammation.

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Before I go any further, let’s talk about inflammation for a little while.  In general, I think it makes sense to break inflammation down into two categories: localized inflammation and systemic inflammation.  Localized inflammation occurs in one specific part of your body: you have a wound that’s healing, or you have tendinitis in your elbow.

Systemic inflammation, on the other hand, is a whole-body thing, and usually takes place as some sort of disease process.  For example, lupus is “an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body.

Decades ago, when researchers first began to look at fibromyalgia, they suspected that some sort of systemic inflammation might be involved.  They questioned whether fibromyalgia might be an auto-immune condition, such as lupus or rheumatoid arthritis.  They were looking for some sort of obvious physical changes in the body; looking for inflammation in the joints, and focusing on on the idea of “tender points.”

Yet none of this research really revealed any of the physical signs they were looking for.  Basically, doctors couldn’t find anything “wrong” with fibromyalgia sufferers.  For a while, doctors measured the number of “tender points” on a patient’s body, but as this 2010 American College of Rheumatology briefing asserts, the tender point test has been shown to not be a reliable means of diagnosing fibromyalgia.

As researchers began to rule out the idea of fibromyalgia being some sort of autoimmune or inflammatory condition, they began to pick up on the idea of central sensitization.   Proposed by scientist Clifford Woolf in 1983, the idea of central sensitization is that people’s nerves can be altered by an extremely painful physical experience.  The way these nerves function can change in response to this experience and leave the person with a heightened sensitivity to pain.  This heightened sensitivity persists, even after the initial injury has healed.

Now most scientists believe central sensitization to be the cause of fibromyalgia.  While there are a lot of things we don’t yet know about it, what we do know is that it is not caused by an abnormal inflammatory response, like rheumatoid arthritis or lupus.  This is why fibromyalgia sufferers have historically been dismissed by doctors—by all objective diagnostic tests, we appear normal.

The fact that so many fibromyalgia sufferers have been dismissed by doctors is what makes us so susceptible to frauds, fads, and bad information.

I can’t even count the number of times I’ve been reading an article on the Huffington Post or ABC news and seen a “Suggested Article” at the bottom screen that reads something along the lines of “Problem with inflammation? You might have Fibromyalgia.”

I’m here to tell you that no, you don’t.  Chronic systemic inflammation is not a symptom of fibromyalgia.

There are simple blood tests which doctors use to determine whether or not a patient has a problem with systemic inflammation.   C-reactive protein and erythrocyte sedimentation rate are two of the most basic measures of inflammation.

If you are concerned about your health, go to your doctor and ask for these blood tests.  If this is a problem that’s been going on for a long time, chances are he or she has probably already ordered them.  You can always ask for them again– I don’t remember ever having to pay some sort of huge copay for them, as they’re pretty basic– but if they come back normal, you do not have a problem with inflammation.

For the first few years after I developed chronic pain, I spent a lot of time wondering if I had a problem with inflammation, thanks mainly to the erroneous information I found in the Internet.  None of the doctors I saw ever seemed to take me seriously.  After I took an anatomy class and learned about the tests that can measure inflammation, I realized why.  I had had these blood tests performed several times a year, and the results were always normal.

This is why I get so angry about these articles and websites that just seem to prey on people’s fears.  I spent years worrying if I was on the road to developing lupus or arthritis or any number of autoimmune conditions, thanks in large part to the misinformation these people spread.

Let’s not be victims of unethical marketing tactics.  If you have a problem with chronic, persistent pain, ask your doctor for the blood tests I mentioned.  If they come back normal, you are going to be okay.  If they come back abnormal, it is time to see a specialist.  The thing to remember is that there are treatments for autoimmune and inflammatory conditions.  If your inflammatory response is so messed up that you need treatment, it will show up on a blood test.  Otherwise, thank your lucky stars and start reading up about how to work with a sensitized nervous system.

**The picture above is actually of a blood sample taken from a dog. How cool is that?  Thank you to Nottingham Vet School for putting it on Flickr.

How to Talk About Pain: Central Hypersensitivity

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It’s amazing how sometimes a piece of writing that’s only a few paragraphs long can help to clarify something you’ve been thinking about for a while.

I found a great article on Body in Mind last night that I felt did a great job summarizing the concepts I’m trying to get at on this blog.

I’ve been struggling to find a catch-phrase to use on my blog, a succinct way of referring to the changes that can take place in a person’s nervous system following a traumatic event that cause her or him to be more sensitive to pain.  (If you are new to my blog, I talk more about how this process occurs here).

I knew that these changes are brought about by a process known as “central sensitization,” but I was struggling to find a way to refer to the end result of this process.  I mean, “chronic pain” and “fibromyalgia” are good terms, but there are a lot of theories floating around about what causes them.  In my blog, I focus on the pain people feel as a result of changes in the way their nervous system processes pain.  I needed a snappy term that would allow me to be very specific about this condition.

Luckily, this article provided me with just that.  The author uses the term central hypersensitivity, which makes so much sense.  (At least, it makes sense if you’re a dork like me who reads about this stuff in her spare time).

For the non-dorks, let’s take a look at this word.  In medical terminology, central pertains to the central nervous system: the brain and spinal cord.  Hypersensitivity, means, well, that something is extra sensitive.  So in central hypersensitivity, a person’s brain and spinal cord are extra sensitive.

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I also liked how this article discussed central hypersensitivity not as some freak occurrence that happens to very few people, but instead, as something that can happen to anyone.  In fact, it probably happens, to some extent, to anyone who experiences pain from a musculoskeletal injury for over six months.  Central hypersensitivity is way more common than science previously thought.

The author of this article (Tracy Paul) discusses this concept in the context of shoulder pain, but that’s because when scientists conduct studies, they have to be very, very specific, lest anyone accuse them of jumping the gun.

She writes, “People who are experiencing central hypersensitivity may continue to perceive pain even after adequate treatment for their shoulder and time to heal, which may be due to hypersensitivity not shutting off as it should in the normal situation.”

But this quote applies to just about any musculoskeletal condition that causes someone to be in pain for months on end.  Paul clarifies that central hypersensitivity has been associated with “…many other chronic conditions such as whiplash injury, fibromyalgia, low back pain, osteoarthritis and hemiplegic shoulder pain.”

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When I look back at what’s happened to me over the past decade or so, I can see how Paul’s description of central hypersensitivity describes me perfectly, if you just substitute the words “lower legs” in the place of “shoulder.”

After I had surgery for chronic exertional compartment syndrome, I still experienced strange symptoms in my lower legs.  For the first few months after surgery, especially, I felt as though my lower legs were full of water. It was a physical therapist who explained to me that these were actually nerve sensations, and that by all objective measures, my legs were ok.  For the first year or two following surgery, my lower legs and feet were extremely sensitive.  It was really hard for me to adjust to new shoes, even if those new shoes were flats.  (This may be hard for anyone who knew me in high school to believe, but I will never, ever wear heels again).

Things have gotten better now.  Some of the more crazy neurological symptoms in my legs went away over time.  I still experience central hypersensitivity, but even that is a work in progress, and I feel as though it is slowly diminishing over time.  Once I learned some of the techniques to work with the nervous system that I will be discussing more on this blog (check out this post to start) my nervous system began to calm down a bit, and I am hopeful for the future.