Do you need to be diagnosed with fibromyalgia to be successfully treated?

For years I thought I needed to find a doctor to diagnose me with and treat me for fibromyalgia.  I sought out various pain specialists; physiatrists and anesthesiologists, the heads of departments.  Some of them even listed fibromyalgia among their clinical interests, which I thought was sure to be a good sign.

Yet every time I actually got into the exam room and asked one of those doctors if I had fibromyalgia, the response was vague.  “I don’t know, I don’t generally diagnose people with fibromyalgia,” was the general answer I got.

After so many doctors in pain management failed to help me, I got it into my head that maybe I needed to see a rheumatologist.  I had done a lot of reading about fibromyalgia online and learned that they often treated patients with this condition.  Of course, I ended up getting the rheumatologist who tells his patients “there’s no such thing as fibromyalgia.”

After all this time, I have never actually found a doctor who treats patients for fibromyalgia. Yet between an amazing physical therapist, some sympathetic doctors who were able to help me anyway, and a lot of persistence and research on my part, I have managed to transform my life into something that is (for the most part) pretty darn good.

I am writing this post for people who might be stuck in the same position I was once in.  If you can’t find a doctor to diagnose you with fibromyalgia, that’s okay.  You can still get all of the same treatments without an official diagnosis.  You will just have to do a lot of your own research and advocate for yourself.

Understanding Fibromyalgia

To understand fibromyalgia, you need to know that research is increasingly pointing to central sensitization as its cause.  Central sensitization refers to the changes that happen to a person’s nervous system to increase his or her sensitivity to pain and other stimuli.  These changes are part of a very complex process that science doesn’t yet fully understand, and no one knows why it happens to one person versus another.  Generally, this process is thought to occur after the body goes through some kind of traumatic physical event, such as injury or surgery.  It is also common among people who have an inflammatory condition such as lupus or arthritis, because their daily experiences of pain have an effect on the nervous system.

While not every doctor believes that fibromyalgia is a real condition, the phenomenon of central sensitization is much less controversial.  I’ve had many productive conversations with pain management specialists about the fact that I probably have a heightened sensitivity to pain; this is something that can be addressed without anyone using the word fibromyalgia.  In ways I feel that healthcare practitioners started taking me more seriously when I stopped asking if they thought I had fibromyalgia and started asking for help with chronic pain.  I’m not saying it should be that way, but in some cases that’s just how it was.

I will write more on fibromyalgia treatments elsewhere in the blog, but let me just do a quick overview for now on where to go for treatment:

Anti-depressant medications: There are antidepressants you can take that have been shown to relieve chronic pain in some people.  (When I say chronic pain, I mean pain due to central sensitization, the same thing as fibromyalgia pain).  There are two antidepressants, Lyrica and Cymbalta, that are specially marketed for pain sufferers.  You can get these from a psychiatrist that specializes in pain management or from a physiatrist (Physical Medicine and Rehabilitation specialist).

You can also see if traditional anti-depressants help you: many of them have been shown in studies to relieve symptoms of chronic pain, and you don’t need as high a dose as you would to treat depression.  You can get these from a psychiatrist or even from a primary-care physician.

You don’t need a fibromyalgia diagnosis to try these medications.  You just explain that you’ve been in pain in a long time and you’ve heard that these medications can help.

Sleep medications: One of the potential explanations for fibromyalgia patients’ heightened sensitivity to pain is that they might be experiencing disturbed sleep, which in turn wreaks havoc on their nervous systems.  (Indeed, other studies have shown that when you take healthy, pain-free people and severely deprive them of sleep for a few days, they start to feel pain similar to that of fibromyalgia sufferers).

You don’t need a diagnosis of fibromyalgia to see your primary care physician or a sleep specialist.  Perhaps they will order a sleep study to see if you have sleep apnea, or else suggest some sleep medications you can try.

Physical Therapy: The key is to find a good physical therapist– in my opinion, about 50% of the physical therapists out there are no help at all for issues of chronic pain where the nervous system has gotten stuck in a feedback loop.  They’ll just look at you like you’re either lazy or crazy, and nothing will be accomplished.

What finally allowed me to turn the corner was that I found an amazing physical therapist.  He had attended a training by Neil Pearson, and was able to explain to me why my nervous system was freaking out.  This physical therapist helped me to see that just because I felt pain in one part of my body didn’t mean that there was something necessarily wrong with that part of my body.  This helped to bring my level of panic way down and weakened the cycle of pain I was caught in.

The funny thing is that not once did my physical therapist use the word fibromyalgia.  Neither did Neil Pearson in the online lectures I keep obsessing about all over this blog.  Instead, they used the terms “chronic pain” and “persistent pain.”  And both of those men helped me more than anyone else.

If at all possible, try to see a physical therapist that has attended a training by Neil Pearson, Lorimer Moseley, or any of the other amazing pain scientists I talk about on this blog.  There aren’t many out there, but if you can ask around and read different physical therapists’ websites to see what they specialize in, it is worth it if you can find someone.

If you can’t find someone who has attended such a training, you can still benefit from working with a physical therapist who is really sympathetic and makes you feel comfortable exercising.  Someone who motivates you without pressuring you into doing things you’re not comfortable with.

As you’ll see when you watch Neil Pearson’s amazing online lectures, pain is your body’s alarm system: when you do something your body isn’t comfortable with, you make the alarm system scream louder.  You have to respect your body’s limits and exercise as much as you can within those limits.  You might find that having a trusted physical therapist on your side will allow you to feel comfortable trying new movements that you wouldn’t be okay with trying on your own.

Exercise:  If you are able to exercise, I think it goes without saying that it is one of the best things you can do for yourself.  Your treadmill doesn’t know whether you have been diagnosed with fibromyalgia or not.

Digestive Symptoms: If you have digestive problems along with your fibromyalgia, you need to find a sympathetic gastroenterologist or nutritionist to help you figure things out.  I had to go through five gastroenterologists before I found a doctor who said something other than “you have IBS.  Try to relax.”

There are all sorts of things that you should be tested for if you have GI troubles, but assuming your colonoscopy is normal and everything, you probably have irritable bowel syndrome, which is caused by nervous system changes similar to those that cause fibromyalgia.  Just as it is possible for the rest of your body to have a heightened response to pain, it is possible for your gut to have a heightened response the things you eat.  A good gastroenterologist and/or nutritionist can help you experiment with eliminating certain types of foods from your diet to see if your symptoms improve.  In that case, the diagnosis you will be working off of is definitely irritable bowel syndrome.

Conclusion

That just about covers the basics.  I hope I have reassured you that you can get better even if you never find anyone to diagnose you with fibromyalgia.  I will be writing more about the causes and treatments of chronic pain/fibromyalgia on this blog, but if you ever want to ask me a more detailed question, you can email me at sunlightinwinter12@hotmail.com


2 thoughts on “Do you need to be diagnosed with fibromyalgia to be successfully treated?

  1. OMG! My husband and I were just talking about this last night – that people and docs are more sympathetic and helpful when you drop the label of fibromyalgia and focus on the symptoms of chronic pain, sleep problems, chronic fatigue and IBS. Thank you for your eloquent phrasing of this issue. I plan to share your post with my support group.

    1. It is totally ridiculous, isn’t it. It’s almost like some doctors think you’re trying to trick them when you ask an innocent question.

      I’m glad you liked the post– thanks for passing it on!

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