No More Tender Points? Part I
By Christine Danella
Fibromyalgia & Chronic Pain LIFE
This article appears in the Nov/Dec 2011 issue of Fibromyalgia & Chronic Pain LIFE magazine, a publication of the National Fibromyalgia & Chronic Pain Association. Reprinted with permission from NFMCPA. For more information, visit www.fmcpaware.org.
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Once the hallmark for diagnosing fibromyalgia – Now a basis of controversy among the medical community
Tender point examinations have been a fact of life for fibromyalgia patients since The American College of Rheumatology (ACR) published the first set of fibromyalgia (FM) classification criteria in 1990. The intended use of these criteria was to identify patients to be included in research studies rather than to diagnose the illness. However, the 1990 paper did note that “the sensitivity of the criteria suggests that they may be useful for diagnosis as well as classification”(4). In the absence of other diagnostic tools, the 1990 classification criteria became the standard resource for diagnosis of FM.
During the past 20 years the problems with using these criteria as a diagnostic tool have become apparent. Focused entirely on pain and tenderness, the criteria disregarded symptoms of fatigue, non-restorative sleep, cognitive difficulties, and mood disorders, as well as other physical symptoms commonly seen in FM.
The most contentious aspect of the 1990 ACR criteria has been the tender point (TeP) exam. If a patient had less than the required 11 of 18 TeP’s but had a long history of other symptoms common to FM, could the diagnosis still be made? When response to treatment reduced the TeP count, did this patient still have fibromyalgia? Would the TeP examination be done correctly or not at all?
Recognizing these problems, a selected group of rheumatologists conducted a study to compare previously diagnosed FM patients with patients diagnosed with other non-inflammatory painful disorders. Their mission was to develop a set of criteria for clinical diagnosis of FM that did not require a tender point exam and that would provide a severity scale for FM symptoms. The results of that study were the basis for the Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity published in May 2010. Below is a comparison of the major characteristics of the 1990 vs. the 2010 criteria.
1990 ACR FM Classification Criteria | 2010 Preliminary Diagnostic Criteria(1) |
History of widespread pain for at least 3 mos. | History of symptoms at similar level for at least 3 mos. |
Pain in all 4 quadrants of the body (right side, left side, both above and below the waist.) | Widespread Pain Index (WPI). Range = 0-19. One point for each affected area within the past week. |
Symptom Severity Scale (SS). Range = 0-12. For Fatigue, Tiredness, Cognitive Dysfunction 1=Mild. 2=Moderate. 3=Severe. For 41 add’l symptoms 0=None and 3=Many. |
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Examination must reveal tenderness upon palpation in 11 of 18 designated tender points. | Diagnosis depends on a floating combination of scores for WPI and SSS. FM = WPI ≥ 7 + SSS ≥ 5 or FM = WPI ≥ 3-6 + SSS ≥ 9* |
Presence of other diseases does not rule out FM diagnosis.(15) | May have no other underlying condition that could be causing the pain.(15) |
May be self-administered. | |
Developed to identify fibromyalgia patients for inclusion in clinical research studies. | Developed to diagnose fibromyalgia in setting of community care. |
*A Proposed 2011modification would add the WPI and SS scales to create the FM Symptom Scale (FS) (9)
As the chart indicates, two scales for symptom identification and severity have replaced the tender point exam. Scores are determined by answers from questionnaires. The intent is for the physician to complete the questionnaire following an interview and physical examination. Although “appropriate clinical assessment” is suggested in the new criteria, it is not a requirement for diagnosis.
Why keep the tender point exam?
At stake is the concept of “tenderness” and/or hypersensitivity to pain, the seminal feature of fibromyalgia. Without it, FM reverts to being just another chronic pain condition. The legitimacy of FM as a distinct illness that organizations like the National Fibromyalgia Association have fought so hard to establish and to publicize for the benefit of FM patients may be in jeopardy.
Noted FM researcher Dr. Robert Bennett, in his article “Don’t Throw the Baby Out with the Bathwater” suggests that ”any potential criteria should not only include but demand a carefully structured physical examination rather than leaving it up to the physician’s discretion.” (3) His examination would encompass myofascial trigger points (MTP’s) as well as tender points. Located in many of the same places as the tender points described in the 1990 criteria, MTP’s have recently been found to be an important contributor to the FM pain experience.
In the absence of a TeP exam requirement, there is concern that time-constrained primary care physicians might rely on questionnaire results alone to diagnose FM. If the illness becomes self-reported, there is a danger that overlapping clinical conditions may be missed. Diseases that mimic or coexist with FM such as rheumatoid arthritis or Sjogren’s syndrome might be left untreated.
The use of questionnaires instead of TeP exams for diagnosis may greatly increase the reported incidence of FM. Although this benefits the individual patient seeking diagnosis, it could have negative results for the currently diagnosed FM population. As Dr. Jon Russell points out in the April, 2011 Fibromyalgia i-Newsletter, blind acceptance of a diagnosis made by a questionnaire could increase the prevalence of FM from 2 to nearly 10% of the population, the estimate of people in the general population who have chronic widespread pain. By diluting the patient population, less credence would be given to those who are truly ill. Finding their way to established and proven FM therapies may become more difficult.
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See tomorrow’s post for the second half of this article, which discusses why to eliminate tender points, how pain thresholds would be evaluated and the conclusion of the article.
Posted: November 28th, 2011 under Living with Fibro.
Tags: Christine Danella, Diagnosis, Dr. Jon Russell, Dr. Robert Bennett, Fibromyalgia & Chronic Pain LIFE Magazine, Pain, Tender Points
Comments
Comment from Elizabeth
Time November 29, 2011 at 7:59 am
Hello! My name is Elizabeth; I live in Minnesota. I was diagnosed with Fibro in March- I met all criteria.
On the second Thursday of Novemeber, I woke up tender point free. Just like that.
I still have Fibro – but the tender points don’t hurt at all.
I recently read an article noting spine pain might also be a new marker for Fibro. In March, and months before, I had severe spine pain. Have you heard about this?
Thank you for your time and info!
Peace! E
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Comment from Sabrina N
Time November 29, 2011 at 10:22 am
As a person who runs FM support groups I’ve seen far too many people who have been diagnosed incorrectly or their physicians diagnosed them with FM without a TeP and in one single visit. No additional testing… just medications.
This disturbing fact is simply another reason why tender point exams given over a long length of time along with a history of work with your physician is SO vital toward correct diagnosis. Tender points come and go, physicians may not properly know how to administer TeP but that doesn’t make them invalid. They exist for a reason, they just can’t ignore that fact.
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Felicia Fibro Reply:
November 30th, 2011 at 12:19 pm
I also don’t think tender point exams should be eliminated all together. I believe that with our current understanding of fibromyalgia, tender points should be kept as part of the examination, but not be used as an excluding factor for diagnosis. There is so much that is still not understood about this syndrome and I believe that tender point information should be included in our records. However, since tender point pain can wax and wean depending on when they’re examined, I don’t believe it should be used as something that could prevent a diagnosis, thus possibly treatment of a person with fibromyalgia.
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Comment from Betsy
Time December 16, 2011 at 6:26 pm
Would it really be so bad if FMS were to become “just another chronic pain condition”? In my extensive years of personal experience, I have seen over and over a distinction made in how “just another chronic pain” is treated vs the way FMS is treated. It shares all the same physiology – the same pain pathways/loops, neural remodeling, allodynia, hyperasthesia – and yet it is NOT OK to treat FMS with opioids even though you treat other chronic pain conditions with them. Sometimes the mere label FMS even to this day becomes a medical albatross that shades professional perception and can limit treatment options. I know we’ve fought for years to be taken seriously, and yet I’m not sure we’ve become anything more than a market for more antidepressants. I cannot possibly be the only FMS patient who has utterly failed all treatment options save for long term narcotics. Thoughts? Anyone? I’m not trying to pick any fights, I promise
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Felicia Fibro Reply:
December 16th, 2011 at 10:13 pm
Interesting point, Betsy. I see what you mean for treatment’s sake with our current understanding, but for research I think we need to be independent, so that fibromyalgia can be fully understood, thus treated better.
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Betsy Reply:
December 17th, 2011 at 10:29 am
I have to admit I’ve gotten a little jaded over the years. I don’t trust the pharmaceutical companies to conduct any research, because they are in the business of selling pills to a person for as many years as possible. They will never, EVER look for a cure. I don’t know that neurology, for all its current advances, is evolved enough to be able to get at underlying mechanisms. It’s fantastic that we know something about what regions of the brain are doing strange things, but getting to the “why” is going to be a long road. I am NOT saying that we need to stop looking, not at all. There are too many of us to just lay it aside. FMS, after all, is not a rare disease. But while we are looking for more answers, can’t we say “pain is pain is pain and here is the treatment algorithm”?
I frankly think we do need to update the diagnostic criteria. The original tender point “thing” was a cut-off for research inclusion. We’ve well established that this thing exists. It also wouldn’t break my heart to rule out lyme (and rule it out CORRECTLY) before making a FMS dx. (Yes, that opens a different can of worms,I know.) I don’t know … just some thoughts is all. Thoughts are good.
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Felicia Fibro Reply:
December 18th, 2011 at 7:44 am
I agree that it isn’t realistic to only look to pharmaceutical companies to make discoveries. Although understanding pain better won’t explain everything, I think that will also further our treatment. Did you hear about the study where, “Scientists think the gene mutation…from their mother may be responsible for a pattern of [fibromyalgia] in her family?” If not, here is a link where I wrote about it and have a link to the full story: http://feliciafibro.com/2011/07/11/two-exciting-news-reports/
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Comment from Cindy
Time December 17, 2011 at 4:41 am
Had a vascular doctor looking over my records and said “I see you also have a little fibromyalgia” I couldn’t believe it had been dismissed as a little bit. I said, ‘No, I have a lot of fibromyalgia” but didn’t know what to say. How do we get doctors to understand how much pain, and other symptoms we have? I wasn’t there for my fibro. so I dismissed what he said but I now have a new family physician who also doesn’t get it and refuses to write an Rx. for any opioids even though I’ve been on them for over 30 years and haven’t had to increase my dose except for a few very bad flare-ups. Even though she sees this, she refuses to help me. I’m off to find a more understanding and less rigid dr. who recognizes the pain of fibro. BTW, this was a women dr. also who one would think would be more compassionate. How can we find a doctor without “shopping” for one who actually treats fibro.?
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Tracey Reply:
December 17th, 2011 at 10:41 pm
As a marriage and family therapist who has cervical compression, I barely met the trigger point exam (11), but my very compassionate doctor who actually touched and worked on my body could feel my muscles and their chronic spasms. I now have diagnosis myofascial pain syndrome. I have done research on chronic pain and opioids, and also on the stigma of fibromyalgia and its effect on the family. I recommend the book “Curing Chronic Pain” by Robert T. Cochran. He has a VERY interesting chapter on opioids and relation to mood disorder.
I also suffer from depression, which was diagnosed many years before my pain became unbearable and I got my diagnosis for fibro. For years, I took antidepressants and figured my “pain” was related to depression. When I finally got fibro/myofascial syndrome diagnosis, I heard tramadol was THE synthetic opioid drug for this, and that if other opiods helped the pain, it wasn’t fibro. Luckily, I went to an understanding pain doctor, who treats me based on pain, not on diagnoses, with opioids. Finding the right dose has helped both my depression and pain. Tramadol does have such a profound effect it made me realize that many of us suffer from opiate ‘deficiency’, that our own natural opiods are not produced like everyone else, and that mood disorders AND pain are interrelated nerobiologially, which is where the latest pain research is heading. I require stronger drugs than tramadol, but use it as breakthrough.
My point after all this rambling is, I AGREE with you Cindy. And opiates should not have the stigma as well, as we are already battling that! In fact, I get better treatment as a “chronic pain” patient than a FM patient.
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Felicia Fibro Reply:
December 18th, 2011 at 7:54 am
It is crazy, the things some people/doctors say! As you look for your new primary care physician, have you considered trying to find a rheumatologist that has experience with fibromyalgia patients? That or a pain specialist might be able to help fill the gaps you’re talking about. Good luck in your search, finding doctors that are the right fit for our health care needs is stressful, but certainly worth it! When I was looking for a new PCP I called and asked to talk to all the clinic managers, explained my situation and asked for recommendations, etc… I did get a lot of rejection along the way (which was tough), but I am really happy with the one I have now.
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Christine Danella Reply:
December 18th, 2011 at 1:59 pm
Cindy
Either a rheumatologist or a physical medicine doctor will prescribe opioids if needed for break-through pain.
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Comment from Marie Moore
Time December 18, 2011 at 7:46 am
I am very confused that under the new diagnostic criteria, you can have no other underlying conditions. This brings up a question: Is fibromyalgia a co-morbidity of ankylosing spondylitis?
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Felicia Fibro Reply:
November 30th, 2011 at 12:39 pm
I don’t recall hearing that specifically, but when I heard Dr. Holman speak last January he said at least 60% of people with fibromyalgia also have cervical spinal cord compression.
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karen Reply:
December 17th, 2011 at 1:51 pm
I too have spine problems along w/fibro.
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