Issue 1: Reviewing the Proposed Diagnostic Criteria for Fibromyalgia
Thank you for participating in this activity. Please rate this activity and join our discussion below as we continue the conversation about fibromyalgia. To get us started, please respond to the following questions:
• What is the most challenging aspect of diagnosing or treating patients with fibromyalgia?
• What do you think about the newly proposed diagnostic criteria for fibromyalgia?
You may leave your response to one of these questions below, or ask a new question and respond to other comments below. I will be available between 4/15/2011 and 5/30/2011 to participate in this discussion and I look forward to our dialogue.
Jon Russell, MD, PhD, ACR Master
Please feel free to rate this program below.
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Rating: 4.4/5 (29 votes cast)
Fibromyalgia iNewsletter Series - Issue 1, 4.4 out of 5 based on 29 ratings
27 Responses to Fibromyalgia iNewsletter Series – Issue 1
The new Fibromyalgia Diagnostic Criteria will be a leap forward in the diagnostics of FMS. In assessing the cognitive and somatic symptoms as well as the pain location and intensity will give the physician a more holist level of FMS severity. This combined with The Revised Fibromyalgia Impact Questionaire is truly a holist assessment of the patient and gives the physician a clearer picture of the severity of FMS for this patient and how it impacts ADL’s. As a nurse, I find this very exciting for like the wind, pain cannot be seen nor can it be felt by anyone but the owner of the pain. As a patient with FMS, I am ecstatic and will take a copy of both forms to my physician at my next appt and will complete the FIQR.
The most challenging aspect of diagnosing/managing a patient with fibromyalgia is arriving at the correct diagnosis as the symptoms of fibromyalgia are also common to many other disorders. The newly proposed FDC appear to provide a more comprehensive system for review of the patient and assessment of the many factors/symptoms/variables that contribute to an appropriate fibromyalgia diagnosis.
Communication with patients,joining the old and the newly diagnostic criteria ACR, the very relevant comorbidities as mood and sleep disorders,do diagnosis of FM a complex scenario. More neuromodulator less analgesics or NSAIDs, meaning that pain in FM is a problem with sensitizacion-other neurological reactions.The most important treatment is directed to THESE CENTRAL SENSITIZACION REACTIONS. Surprisingly, FM can complicate the course of certain rheumatic diseases.
The biggest problem is the response to the treatments. At this point many are sedating, or ineffective. Trying to get patients to actually exercise is difficult. Also the psycological inability to self motivate is challenging.
1. Glad you mentioned discrimination…and dx. of exclusion.
2. Referrals to physical therapy…pool therapy…sessions with psychologist…pain specialists are methods to get your patient self motivated. Also, check for depression.
3. Some physicians just don’t want a Fibromyalgia patient to treat. They take up a lot of their office time. Treating them is complexed. And no cure, either.
The most difficult part is that these patients have so many problems going on that you have to be a real detective to figure out the problem. With the new questionaire I believe that they will help lead to a proper diagnosis. Sometimes I believe that people with Fibramyalgia are discriminated as there are many that feel this is a diagnosis of exclusion. Thank you for this informative discussion.
I’m a nurse, retired, due to the severity of my Fibromyalgia. In 1992, when I was dx., the public knew very little about the condition. Even the medical profession weren’t sure if they accepted it. But, the condition continued…and finally a valid criteria was made. A good start.
I’ve met, and know many with the condition; and can spot someone who has it. But to be able to prove it, you do have to have the benefits of the all the proposed diagnostic criteria.
I believe they have finally found the appropriate tools.
A personal comment: Fibromyalgia is a life changing condition. It took away my career, my lifestyle, my friiends, holidays with my children, my vacations, going to church, going to movies, etc. It can make you lonely and misunderstood, even with the strongest of family support. It really hurts, physically and mentally.
A majority of my patients with FM achieve significant relief from use of microcurrent cranial therapy, e.g. the Alpha Stim 100 unit. I would say 8 out of 10 find a way to buy this unit out of pocket when insurance does not cover it. I would encourage professionals to research and consider it’s use in their practice. Regarding the proposed new criteria, I think they are an
excellent way to better identify and then quantify the severity of the individual’s suffering.
I am a practicing nurse with fibromyalgia since 2006. I was fortunate to receive my diagnosis early. At the time, I felt fortunate in that I did not have many of the symptoms associated with FMS. At present, I seem to have most of them. It is difficult some days to NOT think of in terms of “what I can’t do” rather than what I CAN do.
The most frustrating thing to me is lack of overall medications. Minimal pain relief that is not narcotic or doesn’t intefere with other medication such as antidepressants. New fibro medications that really don’t work or have such bad side effects that the trade off is questionable. Any other meds for sleep, depression and fatigue are trial and error. It sometime leave you with a feeling of a dead end road.
I believe that the tools for diagnosing are improving, but there still seems to be a certain amount of excluding other disease processes that happen before fibromyalgia is diagnosed.
Diagnostic tools are welcomed by patient and physician alike. Waking up in the a.m. feeling you may have gotten one hour of restless sleep accompanied by ‘fibro-fog’ is in itself depressing. But for those that struggle daily, hourly in and out of a nightmare of ‘sickly’ pain compensate with courage and hope. To renew hope and maintain some sense of wellness by distraction using mild exercise does help much like the coffee’s warmth, the gentle hug from a fellow sufferer, though momentary does give some form of ease.
Thank you for all information post, present and futuristic for hope.
The most challenging aspect of treating fibromyalgia for me is that the typical delay in diagnosis allows the illness to progress and makes this illness much harder to treat. Many of my patients are on at least 5-10 medications, of course, all with side effects.
I agree that the 2010 ACR criteria is a GREAT improvement, but the physicians that I have shown it to really do not seem to care about more accurately diagnosing FM.
PATIENTS care about having the syndrome more quickly and accurately diagnosed, we should figure out how to get this info to possible FM patients.
How does a Fibromylagia affect the bladder?? Also, if a FM patient has associated increased fibrin & fibrinogen in the blood- do doctors know how to tx this? If it goes untreated are patients more prone to clots?
\WHat about a patient that has associated hypothyroidism; and thyroid meds don’[t seem to help; I know of a patient that is up to 137 mcg. of synthroid; they were on 90 mg. of Armour tHYROID- but having increased hot flashes & nervousness- and the TSH level isn’t improving is right around a 3- close to 4 level; the Dr. wants it about a one level. What can be done for better tx???
This new FM diagnostic criteria is easily applicable in daily parctice of busy rheumatologist & also feasible for data collection in office setting regarding management plan.
This new FM diagnostic criteria is easily applicable in daily parctice of busy rheumatologist & also feasible for data collection in office setting regarding management plan. FM is the most common presentation of pain in general medicine and rheumatology , it continues to be under-recognized and misunderstood. nearly half of the general public has never heard of FM, many people who are knowledgeable about the disorder incorrectly believe that nothing can be done to manage it, and nearly half of all healthcare providers are reluctant to diagnose a patient with the condition .
Farid Taymouri,M.D.
Tehran, Iran
For me it seems that many of my chronic pain patients come in saying they have FM but when you question how they were diagnosed, they have self-diagnosed by reading something on the internet. By that time, my attitude is in the toilet and I have a hard time believing in the existence of the disease.
There are a number of diseases or syndromes that people find on the internet and believe they have. FM is one of them. The pressure point testing is also not absolutely accurate as they know what to say. On the other hand, pain is pain and treating the pain is a complex situation. If it seems nerve related and they think they have FM I use meds that help with nerve pain. If the pain is joint related then nsaids or other meds may be more helpful. I do agree that the internet has been both helpful and a hinderance to practice.
I never like criteria that has a sort of fudge factor involved. The symptom severity scale seems nebulous. What qualifies (how many) as few, moderate and a great deal of symptoms? Why list fatigue, cognitive symptoms and waking unrefreshed in both areas and essentially be considered twice?
I think one of the factors contributing to difficulty in diagnosing FM is that there are many symptoms in the FM syndrome that could be attributable to other disorders. Patients often also have been diagnosed with other conditions separately from FM that could be part of the FMS. For instance, I saw a patient last week with FM who also had the diagnosis of interstitial cystitis – now I wonder if she truly has IC or if those symptoms are a part of FMS.
What is the most challenging aspect of diagnosing or treating patients with fibromyalgia?
they most often have other comorbid conditions
What do you think about the newly proposed diagnostic criteria for fibromyalgia?
The new Fibromyalgia Diagnostic Criteria will be a leap forward in the diagnostics of FMS. In assessing the cognitive and somatic symptoms as well as the pain location and intensity will give the physician a more holist level of FMS severity. This combined with The Revised Fibromyalgia Impact Questionaire is truly a holist assessment of the patient and gives the physician a clearer picture of the severity of FMS for this patient and how it impacts ADL’s. As a nurse, I find this very exciting for like the wind, pain cannot be seen nor can it be felt by anyone but the owner of the pain. As a patient with FMS, I am ecstatic and will take a copy of both forms to my physician at my next appt and will complete the FIQR.
The myriad other complaints/co-morbidities associated with this patient population
The most challenging aspect of diagnosing/managing a patient with fibromyalgia is arriving at the correct diagnosis as the symptoms of fibromyalgia are also common to many other disorders. The newly proposed FDC appear to provide a more comprehensive system for review of the patient and assessment of the many factors/symptoms/variables that contribute to an appropriate fibromyalgia diagnosis.
Communication with patients,joining the old and the newly diagnostic criteria ACR, the very relevant comorbidities as mood and sleep disorders,do diagnosis of FM a complex scenario. More neuromodulator less analgesics or NSAIDs, meaning that pain in FM is a problem with sensitizacion-other neurological reactions.The most important treatment is directed to THESE CENTRAL SENSITIZACION REACTIONS. Surprisingly, FM can complicate the course of certain rheumatic diseases.
The psychiatrist and behavioral counselors should have impact in the formulation of diagnostic criteria
I think this criteria will be extremely helpful in aiding with diagnosis of the FMS patient
The audio portion of the program stopped at the first slide and did not continue when the 2nd page was opened.
Kitty Parrish
The biggest problem is the response to the treatments. At this point many are sedating, or ineffective. Trying to get patients to actually exercise is difficult. Also the psycological inability to self motivate is challenging.
1. Glad you mentioned discrimination…and dx. of exclusion.
2. Referrals to physical therapy…pool therapy…sessions with psychologist…pain specialists are methods to get your patient self motivated. Also, check for depression.
3. Some physicians just don’t want a Fibromyalgia patient to treat. They take up a lot of their office time. Treating them is complexed. And no cure, either.
The most difficult part is that these patients have so many problems going on that you have to be a real detective to figure out the problem. With the new questionaire I believe that they will help lead to a proper diagnosis. Sometimes I believe that people with Fibramyalgia are discriminated as there are many that feel this is a diagnosis of exclusion. Thank you for this informative discussion.
I’m a nurse, retired, due to the severity of my Fibromyalgia. In 1992, when I was dx., the public knew very little about the condition. Even the medical profession weren’t sure if they accepted it. But, the condition continued…and finally a valid criteria was made. A good start.
I’ve met, and know many with the condition; and can spot someone who has it. But to be able to prove it, you do have to have the benefits of the all the proposed diagnostic criteria.
I believe they have finally found the appropriate tools.
A personal comment: Fibromyalgia is a life changing condition. It took away my career, my lifestyle, my friiends, holidays with my children, my vacations, going to church, going to movies, etc. It can make you lonely and misunderstood, even with the strongest of family support. It really hurts, physically and mentally.
A majority of my patients with FM achieve significant relief from use of microcurrent cranial therapy, e.g. the Alpha Stim 100 unit. I would say 8 out of 10 find a way to buy this unit out of pocket when insurance does not cover it. I would encourage professionals to research and consider it’s use in their practice. Regarding the proposed new criteria, I think they are an
excellent way to better identify and then quantify the severity of the individual’s suffering.
I am a practicing nurse with fibromyalgia since 2006. I was fortunate to receive my diagnosis early. At the time, I felt fortunate in that I did not have many of the symptoms associated with FMS. At present, I seem to have most of them. It is difficult some days to NOT think of in terms of “what I can’t do” rather than what I CAN do.
The most frustrating thing to me is lack of overall medications. Minimal pain relief that is not narcotic or doesn’t intefere with other medication such as antidepressants. New fibro medications that really don’t work or have such bad side effects that the trade off is questionable. Any other meds for sleep, depression and fatigue are trial and error. It sometime leave you with a feeling of a dead end road.
I believe that the tools for diagnosing are improving, but there still seems to be a certain amount of excluding other disease processes that happen before fibromyalgia is diagnosed.
Diagnostic tools are welcomed by patient and physician alike. Waking up in the a.m. feeling you may have gotten one hour of restless sleep accompanied by ‘fibro-fog’ is in itself depressing. But for those that struggle daily, hourly in and out of a nightmare of ‘sickly’ pain compensate with courage and hope. To renew hope and maintain some sense of wellness by distraction using mild exercise does help much like the coffee’s warmth, the gentle hug from a fellow sufferer, though momentary does give some form of ease.
Thank you for all information post, present and futuristic for hope.
The most challenging aspect of treating fibromyalgia for me is that the typical delay in diagnosis allows the illness to progress and makes this illness much harder to treat. Many of my patients are on at least 5-10 medications, of course, all with side effects.
I agree that the 2010 ACR criteria is a GREAT improvement, but the physicians that I have shown it to really do not seem to care about more accurately diagnosing FM.
PATIENTS care about having the syndrome more quickly and accurately diagnosed, we should figure out how to get this info to possible FM patients.
Would love to see the bibliography….
Magnificent service and effort, all the way around, with the exception of one probable “spammer” promoting a
dubious electronic treatment device.
Best wishes,
Bill
Bill Cohen, Founding Publisher
The Haworth Press, Inc.
Founding Publisher, “Journal of Musculoskeletal Pain”
How does a Fibromylagia affect the bladder?? Also, if a FM patient has associated increased fibrin & fibrinogen in the blood- do doctors know how to tx this? If it goes untreated are patients more prone to clots?
\WHat about a patient that has associated hypothyroidism; and thyroid meds don’[t seem to help; I know of a patient that is up to 137 mcg. of synthroid; they were on 90 mg. of Armour tHYROID- but having increased hot flashes & nervousness- and the TSH level isn’t improving is right around a 3- close to 4 level; the Dr. wants it about a one level. What can be done for better tx???
This new FM diagnostic criteria is easily applicable in daily parctice of busy rheumatologist & also feasible for data collection in office setting regarding management plan.
This new FM diagnostic criteria is easily applicable in daily parctice of busy rheumatologist & also feasible for data collection in office setting regarding management plan. FM is the most common presentation of pain in general medicine and rheumatology , it continues to be under-recognized and misunderstood. nearly half of the general public has never heard of FM, many people who are knowledgeable about the disorder incorrectly believe that nothing can be done to manage it, and nearly half of all healthcare providers are reluctant to diagnose a patient with the condition .
Farid Taymouri,M.D.
Tehran, Iran
For me it seems that many of my chronic pain patients come in saying they have FM but when you question how they were diagnosed, they have self-diagnosed by reading something on the internet. By that time, my attitude is in the toilet and I have a hard time believing in the existence of the disease.
There are a number of diseases or syndromes that people find on the internet and believe they have. FM is one of them. The pressure point testing is also not absolutely accurate as they know what to say. On the other hand, pain is pain and treating the pain is a complex situation. If it seems nerve related and they think they have FM I use meds that help with nerve pain. If the pain is joint related then nsaids or other meds may be more helpful. I do agree that the internet has been both helpful and a hinderance to practice.
I never like criteria that has a sort of fudge factor involved. The symptom severity scale seems nebulous. What qualifies (how many) as few, moderate and a great deal of symptoms? Why list fatigue, cognitive symptoms and waking unrefreshed in both areas and essentially be considered twice?
I think one of the factors contributing to difficulty in diagnosing FM is that there are many symptoms in the FM syndrome that could be attributable to other disorders. Patients often also have been diagnosed with other conditions separately from FM that could be part of the FMS. For instance, I saw a patient last week with FM who also had the diagnosis of interstitial cystitis – now I wonder if she truly has IC or if those symptoms are a part of FMS.