How to find help for Central Sensitization

Hi everyone!

I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him.  He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.

I thought his advice might be useful for many of you, so here’s what I said.

First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.

Basically, this video is so awesome, I cried the first time I watched it.  Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.

In the video, Dr. Sletten explains how central sensitization impacts our body’s ability to process certain types of information.

In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.

On my blog, I have written about this the most in terms of pain.  You can feel a light touch on your skin, and have it be excruciatingly painful.  Your nervous system is magnifying the sensation.

But there are many other types of stimuli and sensations that our nervous systems can experience more intensely.  Noise, in my experience, can be a big one.  If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day.   It’s like I just can’t block it out.

Heat, to me personally, is another one.  I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts.  It’s like… other people can sort of brush it off.  With me, it’s like it heats me up to my very core and I just can’t think clearly.  (Then I start to experience anxiety, which has been TONS of fun!).

So… back to our main topic.

This reader wanted to know if I had any suggestions for how he could look for help.  (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried).  So here is my answer, written for a general audience.

It would be really great if you could find help in one place.

For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida.  This type of a program, ideally, is geared towards helping people with complex pain problems.

If you have the option of attending such a program, I certainly recommend it!  However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper.  (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).

So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).

What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing.  Here are some examples, for symptoms that are common in people with CS:

Musculoskeletal Pain

The person who helped me the most with my chronic pain was actually a PT.  He truly changed my life.  He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.

As a result, I learned to work with my nervous system, not against it.  I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest.  PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).

There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain.  Physiatrists work in the specialty Physical Medicine and Rehabilitation.  Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.

A physiatrist may ask you about your daily life, and how your sleep is.  They may offer you medications such as Lyrica or Cymbalta (see below).  They may also offer different types of injections, such as trigger point injections, to help with muscle tightness.  In general, they can help you think of solutions you may not have thought of.

Other, non-musculoskeletal symptoms

There are definitely other symptoms and conditions that can be caused by central sensitization.  Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.

Digestive System

One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.

If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.

It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.

If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions.  There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers.  Stress, of course, is a bigger trigger and it’s important to learn how it affects you.  But keep in mind that it is not the only factor, which is why you should investigate all of your options.

Bladder

Another sensation that can be intensified is the sensation that your bladder is full.  This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.

However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.

So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.

Headaches/Fatigue/Dizziness

These are also some common symptoms of CS/fibromyalgia.  However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.

Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.

What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.

Each specialist may use slightly different terminology, or explain it to you in a different way.  A physiatrist will be talking to about pain.  A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.

But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.

So… it isn’t really possible to get help for all of your symptoms from one person.  Because you need to get the information from a specialist.  

There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc.  You have to go to someone with specialized knowledge, for each of these different types of symptoms.

So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.

You will need this person on board to direct your care, write referrals, etc.

I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.

The woman who was my doctor for over 10 years didn’t really believe fibromyalgia was a real condition, so needless to say, she didn’t treat me for it.

Fortunately, that never stopped me from seeing all the specialists I needed to.  It’s not like my doctor was going to say no, and refuse to write me a referral if I said I was having a problem.

However, I am currently in the process of seeking out a new doctor, because our knowledge base is changing all the time.  And because, of course, I’d prefer to have a doctor who actually believes me!

But I know what it’s like to struggle for answers, and not know where to go for help.  

I wrote this post for you, if you’re in the same boat.   Hopefully I’ve given you a good idea of how you can work within the framework of the health care system to get help.

For more ideas, you can check out the following post.  It’s actually an old post, but I just went back and re-worked it before I answered this reader.  It has a little more detail on various treatments:

Don’t worry!  You can still get help, even if you can’t find a doctor who treats fibromyalgia!

Okay… that’s all I have to say for now!

Wow… this was a lengthy one!

As always, if you have any questions, you can leave a comment below or email me at sunlightinwinter12@gmail.com.

Thanks!

Sunlight in the Kitchen

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Here’s something you probably didn’t know about me:

As much trouble as I’ve had with chronic pain over the past ten years, I’ve had almost just as much trouble with digestive issues.

I haven’t written about those issues yet for a few reasons.  For one thing, they’re embarrassing.  Really embarrassing.  I’d much rather talk about running injuries and muscle pain.

For another, I wasn’t sure how many different topics it would make sense to talk about on one blog.

But digestive issues, such as irritable bowel syndrome, are actually pretty closely related to fibromyalgia.   From the time I’ve spend interacting with other bloggers, it seems like most people with fibro have some digestive issues.

I happen to know a little something about all of that.

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In the past ten years, I have been through six gastroenterologists, four nutritionists, and four pelvic-floor physical therapists.

I didn’t find any answers at all until I met my fifth gastroenterologist in 2011.  Even then, what really made the difference is that I had started doing a lot of my own research about what I thought might be causing my issues, and this doctor was open-minded enough to humor me.

At that point, I finally started to figure things out.  None of my issues turned out to be terribly rare, or even hard to diagnose.

It was simply that I had fallen through the cracks– that I was a young, relatively healthy-looking woman, and that the first four doctors I saw found it easier to write my problems off as being caused by stress, rather than ordering some pretty basic testing.

The fact that I had fibromyalgia made it even more likely that these doctors would write me off, because pretty much every medical person knows that these issues are so closely connected.

But just because there are connections between fibromyalgia and irritable bowel syndrome does not mean that treating one will automatically treat the other.  And just because a patient has fibromyalgia does not mean there cannot be other causes and contributing factors to her IBS.

So I have decided to start sharing my experience with digestive issues with others.  To raise awareness about the basic things that most gastroenterologists and other health professionals already know, yet don’t always bother to investigate with their patients.  Once you know about these potential issues, and the tests that can be done to diagnose them, you can begin to take charge of your own health.

I have decided to write about these issues on a second blog, simply because I don’t want to completely overwhelm the people who are already following this one.  I plan to post a lot of recipes/cooking inspirations on the new blog, which I know might not interest every single follower here (and that’s totally ok!).

I hope you will check out my new blog, Sunlight in the Kitchen.

**Strawberries photo courtesy of Sharon Mollerus**

Beware the Red Herring

One of the reasons I sometimes take a critical tone towards alternative medicine on my blog is not always that I think these approaches have no merit.  But I do think that, too often, people are drawn to and waste their time treatments that are simply “fads.”

When I look back on everything that led up to my losing an ovary, I can’t help but feel my digestive problems are to blame.  I wasn’t sure I wanted to talk about my digestive issues on this blog, but what the heck.  I have issues with IBS and chronic constipation, made worse by the fact that I have a pelvic floor disorder.

I am so used to feeling discomfort in my abdomen that I didn’t rush to the hospital the moment things began to hurt.  In retrospect, that was critical time in which my ovary was being deprived of blood supply, and although the doctors and nurses I talked to didn’t want to come right out and say it, there is a chance I could have kept my ovary had I gone to the hospital sooner.

When I look back, I can see that some of the symptoms I associated with my twisted ovary were actually building for months.  I had this weird feeling in my right side, a feeling that something was where it shouldn’t be, for almost a year.

It’s so infuriating to realize this, because I talked to two gastroenterologists about the feeling that something new was wrong on my right side, that somehow things were getting worse.  I told my most recent doctor– who actually published a book on digestive issues in women– that I felt as though the right side of my abdomen always seemed to be a bit swollen (for lack of a better word). That my right side was always aching a little bit, that it was simply bigger than my left side.

This doctor basically told me not to try too hard to diagnose myself; that I shouldn’t go by how things felt from the outside.  I tried to explain that I wasn’t, but our appointment time was over and she had mentally checked out.

I am so frustrated now, because I wish she could have pointed just out that ovarian cysts can have many of the same symptoms of IBS.  Perhaps she could have said something like “Gee, I have no idea why that area is bothering you, perhaps you should try seeing someone in a different specialty.”

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I also wish I’d tried harder to get an answer.  It’s funny because, a few days before the pain really started up in earnest, I knew things were getting worse.  I didn’t have the horrible pain in my right side yet, but the feeling that something was there, that something was stuck, was really getting on my nerves more than usual.  I remember saying to my mom “I have to deal with this problem.  I can’t keep taking no for an answer.  I have to find a new gastroenterologist.”

Almost a year had gone by since I had seen a new doctor.  The last time I saw my doctor, which was almost a year ago now, she had offered to put me on Amitiza, a medication for chronic constipation.  I was reluctant to start a medication without exhausting every other possible option, so we decided that I would try going gluten-free first to see if it helped.

My doctor had said that sometimes it can take a long time for the gluten free diet to help.  She also said that it won’t necessarily work to just reduce gluten; you might have to eliminate it completely to really see an improvement.  So I spent the past year waiting to see if this would help.  At some point over the course of that year, my right ovary began to twist, and I did not aggressively pursue answers for the new pain I was feeling.

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Now, I am sure that a gluten-free diet has helped many people.  But at the same time, gluten-free diets for non-celiac sufferers is not something that has actually been proven to have any scientific merit (as far as I’m aware).

I think it was a mistake for me to have endured so much discomfort, for so long, waiting for something with so little evidence to help me.

When I look back over the years, I can actually see how sometimes, being stoic and just enduring the pain and discomfort has not served me well.  I’m sure certain family members of mine will get a good laugh out of this statement, but I wish I had complained more, not less.

Being stoic is not always good.  And neither is being too open to new ideas.  I had a very real, very diagnosable problem in my abdomen.  But I was content with no answers, for too long, because I was waiting to see if something that is basically a fad was going to help me.

Of course, I don’t mean this in any way to be a criticism of those who are on gluten-free diets.  If it helps you, that’s great.  I might even try it again in the future if my digestive symptoms don’t improve.

But it’s about proportionality.  When I look back, it just doesn’t seem logical; the idea that I could fix extreme discomfort by no longer eating something I had eaten comfortably for most of my life.  I can see why my doctor would have recommended a gluten-free diet for a more subtle condition.  A subtle treatment for a subtle condition.

But there was no proportionality between the persistent, nagging feeling that something was stuck in my abdomen, which bothered me day in and day out, that kept me awake when I tried to fall asleep at night… and gluten.  If gluten-free diets could clear up this kind of discomfort, I’m pretty sure they would be in medical textbooks by now.

So, these were my mistakes.  The first: a lack of proportionality.

The second: being too stoic.  I waited far too long for something with very little scientific credibility to help me, instead of insisting that a doctor understand exactly how miserable I am.

Let’s not be strong all the time, people.  Sometimes, it’s really important to just let yourself complain.