If you are reading this, there is a good chance you either have fibromyalgia yourself, or love someone else who does. You are filled with questions. You are looking for answers. You are grasping for any little bit of hope you can find.
Over the years, I have spoken to tens of thousands of people like you; people who have gathered in auditoriums to hear the fibro expert speak. Never has there been an empty seat. Why? It’s not my looks. It’s not even what people think I might say. It’s that people like you are desperate.
Fibro is a terrible disease. But it also is more than a terrible disease. It is more like a curse. You (or your loved one) feel like crap. You feel like something the cat dragged out (because no self-respecting cat would EVER drag you in). But you look good. Everyone tells you how great you look. “You’re looking great today! How are you feeling?” But they don’t really want to know. Not really. They want you to say you are feeling better. Things are coming around. Everyone is convinced you are just depressed. And hey! Everyone gets depressed once in awhile. And that, one day, you’ll just snap out of it and become healthy and active again.
In your heart, you hope they are right. But you know they are not. They can’t be. How could depression cause such terrible pain? And such horrible fatigue? And everything else?
I have stood up in front of halls packed with hundreds upon hundreds of people like you. I have looked into expectant faces. Faces hoping for a miracle cure. Hoping for magic. And I have always have started by telling them the same thing…
I‘VE NEVER TREATED FIBROMYALGIA!
That’s right. I have NEVER treated fibro.
This invariably causes a bit of a stir in the crowd. One guy yelled out… “So why the #*%#@ are you here?”
What about you? Are you shocked? Are you angry? Are you wondering why the heck you ever picked this paper up?
I am not prejudiced against persons with fibro, as my statement might be construed. I say it as a point of fact. I’ve never treated fibromyalgia. I’ve never treated osteoarthritis either, even as an arthritis expert. Or rheumatoid arthritis. Or tendonitis. Or neck pain. Or back pain.
I’ve never treated any of these diseases.
I’m proud that I never did.
BECAUSE I TREATED PEOPLE!
If there is one absolutely essential message that I want anyone reading this to get, it is that treating the person, and not the disease, is the only way to go with fibromyalgia.
If we had a cure for fibromyalgia, we could treat the disease. The doctor could be as cuddly as barbed wire. But if she or he could prescribe ten days of some pill that would make all your pain and other symptoms go away forever, who the heck would care?
But we do not. We don’t have a cure for fibro; at least, not one that I or any of the scientific medical community is aware of. And I would be wary of anyone who tried to claim otherwise.
Some drugs help. Amitriptyline (Elavil) was the initial darling doctors had, and every fibro patient got it because of some clinical trials conducted back in the 1980s that showed that it helped somewhat. But the only studies that looked beyond about one month of treatment found that amitriptyline often stopped working. And many patients had side effects like increased fatigue, mental fogginess and weight gain.
Amitriptyline was NOT the answer for most. Cyclobenzaprine (Flexeril) emerged as a second option. As a muscle relaxant, it actually had some pain-killing qualities; but it, too, only helped a small minority of patients long-term.
Anti-inflammatory drugs sometimes helped, but there were risks associated with them, like ulcers and high blood pressure, among others. And Tylenol usually was not strong enough.
Then came newer, more fibro-specific drugs like Neurontin (gabapentin), Lyrica (pregabalin), and Cymbalta (duloxetene). They too can help some, but not others. And side effects sometimes limit their use.
My point is that these drugs, even when effective, usually are not enough, on their own, to make a huge positive difference in the fibro sufferer’s life. The same is true of other treatments. Pacing is a great idea, for everyone. But, as one patient asked me – “how do you pace when you can’t even move?”
Exercise also is beneficial; but again, it takes a long time sometimes to produce any benefit, and some patients actually feel worse, at least initially after starting to exercise. Massage can help some; but others can’t tolerate it. A hot tub can be magic for some; but others feel so wiped out afterwards they can’t function.
No one approach is the answer. And everyone is different. So at this time in the history of the universe, I believe we must address the person, and not the disease, when dealing with fibromyalgia.
THE PERSON-CENTERED APPROACH TO FIBROMYALGIA
This approach is simple in concept, and more difficult in practice. It is:
1. Have the patient create a problem list.
2. Have the patient prioritize that list, from most troublesome to least troublesome.
3. Address each problem on the list, not necessarily (or usually) all at one visit
4. See them back and keep trying until you and the patient are satisfied.
The difference between this person-centered and the disease-centered approach is like bacon and eggs…
The chicken is involved, but the pig is committed.
The person-centered approach requires more of the doctor. It is more time consuming for the doctor. It carries more risks for the doctor. It is much less financially viable because it takes more time and effort. Instead of rolling patients through the process like cars through a car wash, the doctors must stop, listen and actually care.
I actually believe that many general practitioners (GPs) and family physicians already utilize this approach, much more so than specialists. Why? Because specialists don’t have to see you back. But GPs do. And so they know that the disease-centered approach doesn’t work for many/most. In fact, I believe that many GPs are almost as frustrated with specialists as you are. The GPs know that the drug-exercise-pace approach isn’t the whole answer. They wish the experts would offer something more, what with all their extra training. But they usually do not. Why? Because many specialists are not committed. If they were, they’d see you more than once.
So… because they see you again and again, committed GPs have to come up with other solutions. Rather than senselessly tackling the whole fibro disease, they start trying various remedies to address at least the primary complaint you are bringing to them on that particular day. This forces them to listen to you, even if only briefly, and try something new. The problem here is that they often do not know what to try; but at least they are trying. Anyway… let’s review the patient-centered approach.
- Have the patient create a problem list.
For some patients, this will be a short list; for others, a longer list. Almost always, most of the items on this list will be symptoms, like pain, fatigue and headaches. However, some may list loss of income as a problem, or the inability to function at work, or the inability to play with one’s kids, or marital problems… In other words, problems other than symptoms should be on most patients’ list, because these problems almost always co-exist with symptoms.
- Have the patient prioritize that list, from most troublesome to least troublesome.
Although pain, fatigue and sleeplessness are the three symptoms most commonly rated as most problematic, others may begin their lists with some other symptom such as short term memory loss (unless they forget about it), or with some consequence of their symptoms, such as loss of employment or marital difficulties. The drug A, exercise and pace approach does not address these sorts of problems very well. The patient-centered approach, I argue, can do much better.
- Address each problem on the list, not necessarily (or usually) all at one visit.
Addressing a problem does not necessarily require a drug or therapy. Addressing a problem may require any one or any combination of the following:
Education... This is what fibromyalgia is; and this is what is isn’t!
Explanations… “The reason your leg hurts, Mrs. Johnson, is that there is a dog attached to it.”
Reassurance… “No, Mr. Jones, your arm is not falling off. Your hand is iffy… but your arm is well attached.”
Suggestions… “If you always get a sharp pain in your eye every time you take a sip of coffee… take the spoon out of the cup!”
Support… Such as writing a letter supporting your application for a disability pension… “Mrs. Williams has objective evidence of being impaired by reason of not having moved in fourteen months…”
Medication… And I don’t mean just amitriptyline!!!
Therapy… Lots of choices here.
Surgery… Rarely required.
Possibly Other... Some patients want to go the herbal route, so physicians should at least attempt to know what various potential remedies claim to offer. Remember that many drugs we now use once were herbal remedies.
- See them back and keep trying.
As important as any other facet of this approach is follow-up. That is because we know we are not curing the disease here. We are not even trying to. We know we cannot. What we are doing is trying to make the patient feel better. Follow-up is necessary to see how we are doing at this, and to allow us to adjust our treatment accordingly. It also allows us to address problems that we may not have had time for at previous visits.
A COUPLE OF EXAMPLES
I once had an elderly patient named Jeannie who always came to clinic riding a scooter – why? She had osteoarthritis in her left hip that made it way too painful for her to walk. Her doctor didn’t want to refer her to have her hip replaced, because Jeannie also had fibromyalgia and the doctor didn’t think surgery was worth it. Jeannie’s list started with hip pain. In fact, it was numbers 1 through about 7 on her list. I was lucky enough to get Jeannie into a hip surgeon fairly quickly, who agreed to put her on his cancellation list.
Jeannie still had fibromyalgia-related pain after her hip replacement; but she was walking and was MUCH better overall. Hip pain used to keep her up at nights, but now it didn’t; so she was more rested and more active, and even had lost weight. If I’d only seen her once, it might have taken 3 years to have her hip replaced. But because I was committed to treating her hip pain, I convinced a very good hip surgeon to become committed too.
The second patient was a young man with a wife and two young kids. I saw him several times and didn’t seem to be making much progress. His #1 problem was his lack of income, since his application for a government disability pension was bogged down and seemingly going nowhere. I saw him mid December about ten years ago. I asked him to give me his list. We spent quite some time talking about his #1 issue. He was despondent because Christmas was about one week away and he and his wife had NO money to buy their kids ANY presents for Christmas. Their wife’s part-time work and his meager unemployment insurance barely covered their rent and a little food. I could have told him to stand pat… that things would work out, eventually… and I did. But I also gave him the $80 I happened to have in my wallet.
“I can’t take this!” he told me, trying to hand it back to me.
“It isn’t for you,” I said. “It’s for your kids.”
Now, before you go all weepy on me, please recognize that $80 meant nothing to me at the time. I had $80 in my wallet, but could easily stop at a bank machine on my way home and not miss any of it. At best, since the government health insurance plan would pay me for my time with him, I’d seen him that day for free. But the $80 meant EVERYTHING to him.
One month later, I saw him back and he admitted that he’d been very suicidal that morning he saw me in December, so ashamed he was of letting his children down on Christmas morning. But instead of following through with his morning plans, he took the $80 I’d given him, went to a dollar store, stocked up on toys for $40 and managed to have enough left over to buy some extra groceries to make Christmas and New Year’s Day a bit special. From that day forward, every time I saw him, he brought me a plate of cookies or brownies his wife had baked for me. Six months later, his disability application was approved, retroactively, and he received a $6000 check, plus the assurance that he’d receive extra money every month thereafter. He brought his wife and both kids with him that day to tell me about this. He had a beautiful family, and all were smiling. I’ll never forget the hugs they all gave me… all because I treated this patient as a person.
That $80 was the best $80 I ever spent!
Kevin White, MD, PhD; www.thefibrofog.com