Does Your Patient Really Have Fibromyalgia?

Hi. My name is Dr. Charles Argoff, Professor of Neurology at Albany Medical College and Director of the Comprehensive Pain Center at Albany Medical Center in Albany, New York. One of the more common chronic painful conditions that we all encounter is fibromyalgia. As we continue to learn more about the mechanisms and the breadth of the involved areas of the nervous system, and we have changed the way we diagnose this condition, it is important to describe a typical scenario that I see very commonly in my practice at Albany Medical Center.

Consider a 42-year-old right-handed man who was involved in a motor vehicle accident. He was driving his truck and was hit by another truck, crashed, and immediately complained of pain in his middle thorax and spine, his neck, and lower extremities. He went to an orthopaedic surgeon; he went to his primary care doctor; he was advised to have physical therapy; x-rays did not show any type of fracture, and he did not do very well. He continued to have widespread pain. He had no family history of fibromyalgia or anything similar. Previously, he had worked for his company for 20 years and he was considered a good worker. He used a little bit of tobacco, but was not a significant alcohol or recreational drug user. He had no past surgeries.

He was then sent to a local rheumatologist who evaluated him and said, "You have fibromyalgia; sometimes trauma can cause fibromyalgia." The rheumatologist advised him to use typical treatments including exercise. He also talked to the patient about using a medication, such as duloxetine, that is now US Food and Drug Administration (FDA) approved for fibromyalgia. That did not help him, so he wound up using pregabalin, which is also FDA approved for fibromyalgia. That made him too tired, and so he was referred to the pain center at Albany with a diagnosis of fibromyalgia following trauma.

The first thing I did after taking his history -- and it is so important to review past records and take a careful history from someone with whom you don't have an extensive history -- I also learned that he was having difficulty sleeping. He was fatigued and felt stiff in the morning, so he had features that would have been considered consistent with the criteria we use for fibromyalgia.

Many of you may know that we have moved away from the older American College of Rheumatology 1990 criteria, which emphasized the presence of tender points in 11 out of 18 defined areas throughout our body, above and below the waist and on both sides. We have moved into an accepted means to diagnose fibromyalgia, not so much when there is no pain at all but when there aren't a full number of areas of tenderness, and there is also fatigue, cognitive dysfunction, and other measures that we see in fibromyalgia. This is something that has come out over the last year to aid in the diagnosis of fibromyalgia, so that people are not missed.

When I examined this patient, it was clear that there was something wrong with his central nervous system. He had diffusely enhanced brisk reflexes, plantar responses, sometimes called Babinski responses, that were extensor bilaterally; clonus -- sustained rhythmic movement of his joints when the maneuver was elicited -- in his ankles; bilateral Hoffmann signs; Lhermitte's sign -- neck flexion caused significant pain going down his spine; and then he told me it felt worse, not better, during a hot shower. I told him that we needed to do more studies. This patient had not been imaged at all other than with simple x-rays. Those of you who are neurologists probably know where I'm going with this. When we imaged his cervical, lumbar, and thoracic spine, and his brain, we found that he had widespread demyelinating disease. He had had a less than symptomatic case of multiple sclerosis for many years. After we figured this out there, we went back in his history and identified some signs that he had had this problem, but after his trauma he had much more widespread complaints.

The important point here is that it is essential to evaluate people you suspect of having fibromyalgia as extensively as possible so you can see the whole playing field. It is not uncommon, as in this case, to have a fibromyalgia-like presentation with a nondiagnosed multiple sclerosis. We have seen people for whom we have made a diagnosis of rheumatoid arthritis when that had not been considered previously. We see people who have localized symptoms of rheumatoid arthritis and more generalized complaints and other complaints that are consistent with fibromyalgia. You can have both. The most important thing, for treatment purposes, is to be able to work with a patient as successfully as possible. It is important to have a comprehensive evaluation so that people who are said to have fibromyalgia have been evaluated comprehensively so as to focus attention on all the conditions that might explain the problems they are experiencing. We often under-evaluate a patient and label their symptoms "fibromyalgia" without a full evaluation. Although some of you viewing this might think that is wasteful and expensive, it is not expensive if you do the right evaluation at least once. Then you have more evidence to support what you are treating. I hope this has been helpful, and thank you very much.

16 Replies

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  • I am sure he is right, that doctors label us with Fibromyalgia and stop looking for other causes of our problems. Whereas Fibromyalgia should be diagnosed by exclusion eg in this case the exclusion of MS.

    I wonder how many doctors will take heed of this advice?

    Julie xx

  • That was very interesting but also worrying for many I am sure.

    The cost of many of the diagnostic tests I am sure would prevent some GP's from taking the investigations that far. I am assuming the man in the report was a person paying for his medical care (as with most working US citizens).

    It does bring it back to the point that those of us diagnosed with fibromyalgia (but feel there may be something else too), have to keep pressing the point with our GP's and make them take notice of us if we really have concerns. If you are a quiet type of person that doesnt exprerss themselves well, then it may be a good idea to take someone else with you to help you.

    I have fibro and still dont fully inderstand why one day can be fine and the next 3 awful. Lets hope thats all it is!!!!!

    Hugs n stuff :)

    x

  • Well from my understanding.. as fibro is connected to the central nervous system it can mimic MS symptoms thats why it is very important not to allow Drs. to be dismissive of other perhaps ailments/symptoms experienced and just say.. oh its your fibro... ha as if it belongs to someone... it doesnt belong to me. I never invited it.. ;-) x But yes very worrying but by highlighting as much information as we can.. we the fibro fighters can become more knowledgeable.. x

  • i so agree.i have so many symptoms which fit fibromyaligia which a specialist on first appointment just asking about my mental health 5 yrs ago.as been in and out psychriatric ward.i have been reading many post.then looked them conditions which could also be me...i so confused.dont no hw 2 nw bring up with new doc after 3rd doc.in a yr cause was'nt happy with other 2.i have seen hear 1 time and brought up fibro.all i she said there no tests yet 2 prove it .

  • i have been in and out of hospital for mental health 16yrs.which all the hospitals notes show..which i belief thats all he read.

  • Bless you ~ Whilst there are no conclusive tests for fibro there are significant examinations which can diagnose.. these actually mainly be the trigger points and discounting any other condition.. The Key symptoms to fibromyalgia are mainly..

    Musculoskeletal Pain

    Heightened sensitivity to Pain

    Stiffness

    Soft Tissue Tenderness

    Numbness and tingling

    muscle spasms

    Cramps

    Chronic Fatique

    sleep Disorders

    Cognitive/Memory Impairments

    There are also related medical issues.. which are the following..

    Headaches

    Migraines

    IBS

    Temporomandibular Joint Disfunction ( TMJD)

    Interstitial Cystitis ~ Painful bladder syndrome

    Heat/Cold Intolerance

    PMS... Obviously not a symtom for the males but it has been shown tht PMS worsens for women who have fibro.

    Restless leg syndrome

    Periodic Limb Movement disorder

    Depression

    Anxiety

    :-( x

  • have nearly all them.or maybe all.i so losing faith in gps .i rarely hear people around me happy with there gps.this yr been paranoid about going docs.feel they label to quick (hypercondract)docs learn from a book.never wore are shoes.x

  • This is something that I have been thinking about for some time. There are many symptoms that are present in both FMS and MS but how many of us are actually checked for MS? We all know that Fibro is indeed very very real but sometimes I think investigations should go further to rule out anything else before diagnosis.

  • Dear Dr Argoff - I thank you so much for taking the time to post such an insightful blog. I hope your patients know how lucky they are.

    Your post is absolutely amazing and I fear the significance of it may not be recognised - for several reasons:

    On a practical note - the design of Healthunlocked means that important blogs can drop off the bottom of this list and may not be seen. This is a great pity because what you have to say is so important.

    Fear: Some people may be wrongly alarmed by the mention of MS. This too is sad. I read much deeper into your message. The point I glean from your words, is the possibility of missed diagnosis.

    I have little doubt that some fibromyalgia patients may actually be undiagnosed MS sufferers. I also have little doubt that some may also have missed diagnosis for other debilitating conditions, for example Thyroid, Parathyroid, Adrenal insufficiency and other endocrine disorders. It gets even more complex when taking into account co-existing and related conditions like Pernicious Anaemia, Vitamin D deficiencies and other hormonal imbalances.

    Then when you add interactions between inappropriate medication and inappropriate treatment of the conditions previously mentioned into the mix, the list is endless. I can't bear to mention inappropriate diagnosis of mental conditions.

    I find it interesting that conditions like fibromyalgia only became prevalent in the 70s after the introduction of assays for thyroid blood testing and synthetic hormones. I believe there is a very strong link.

    I know how important it is for some patients to get a diagnosis so they can put a name and a reason to explain why they are so ill. My concern about that is how many people then accept the label they have been given and how many doctors can then sit back and say, 'that's got them off my back'. Accepting the label can also be out of fear that it could be something even worse.

    My heart aches when I see the posts on this site and on other similar ones like Thyroid UK. 10,000 members on these two alone - many with wrecked lives, jobs and broken families. I want to scream out - have you had your thyroid checked? How about B12 and vitamin D deficiencies? Of course, I am over simplifying very complex areas, especially as that is no easy road given the lack of knowledge into the diagnosis and treatment of those conditions too. Nevertheless, the point is - has there been a proper and holistic approach to diagnosis of many common conditions before stamping a patient with Fibromyalgia? I suspect many people on here question that themselves but are left with no alternative but to accept what the 'expert' is saying.

    The point that you make about the gentleman in your case study is that you took the time to make a proper and informed diagnosis using knowledge and skills to either discount or confirm your suspicions.

    This art of diagnostics through systematic and careful investigations has all but disappeared from medicine today - replaced with an over reliance on scientific study and blood testing that is flawed by bias and dare I say it, the influence of big pharma.

    I thank you again for your post and I just wish there were more like you.

    You will be welcome any day on Healthunlocked Thyroid UK.

    With best regards....

  • Thanks so much for this, and to Lacey for sharing that mission statement. I am fairly new to investigating my own health issues after a throwaway diagnoses from my gp who refuses to refer me. I'm now stretching my money out for key private blood screenings and hot on the hypothyroid/adrenal connection. I am one of the luckier one's in as much as my partner's income is enough to keep us both, plus we have no children. It also breaks my heart to see posts from the depths of despair. Further, the all in your head stigmata...my GP feels that way too when I was actually going through a symptom build up. I think this is probably the worst stumbling block that impedes all other progress either in how we feel about ourselves and in the eyes of professionals that should be helping. I don't blame my doctor solidly....he sees his budget shrinking the minute I walk in the door - without perceiving anyway of justifying the continued negative investigative results. So pleased to find others that can speak with and for us.

    Helen

  • Dear editfmrt Thank you for your lengthy and timely response.. this post by Dr Argoff was re-posted by me... I have followed some of this posts from reuters along with others mainly for fibro and another condition which I have..

    I wanted to say that I agree with you entirely... and thats one of the reasons I wanted to share his letter... as it makes so much sense... I also agree that it is a shame that here we cannot highlight blogs that are of importance as I too have found that I have missed some relevant information or blog that another member has kindly posted and then go round in circles trying to find it..

    I have always thought that the medical and the holistic should combine their knowledge to help FMS and other central nervous disorder conditions as I do feel that with that imput we may make further progress into correct and substantial diagnosis and possibly answers for relief or maybe even a cure one day... I never rule out hope.

    The thing is studies cost time and money, and not everyone can take part or isnt aware of such... we are fobbed off with whatever medications or what is deemed to work for fibro patients and what is available. Personally I am not on any medication due to allergies and have gone down the more holistic route... B12.. I take sublingually ? ( spelling)... Vit D too along with Omega... I have helped myself to the point of exhaustion, monitoring, watching foods to see what brings a flare up , alkaline diet, etc etc... What confuses me is that my test for fibro was done by a rheumatologist, as I progressively worsened I asked the dreaded MS question ( my thyroid is in normal lines whatever that may mean)... and I was dismissed... It isnt that I want MS.. I already have enough to deal with as fibro is my secondary condition, however I know my body.. and from being fit, healthy, dancing, running I am a shadow of myself... and the clumsyness, the balance, the trying to make my mind tell myself, ie my leg to move forwards or step this way, is a constant drain. Not to mention all the other added " benefits" ha ha of the fibro condition.

    Healing comes from within, however we need to have or know of the root cause... and that is what is missing. Whilst fibro and ms are a real and debilitating condition, fibro is noted to "mimic" ms symtoms so why are we not all tested for MS to rule out completely as many are not. Sorry if this is long winded and sorry if you are disappointed it was not Dr Argoff personally however you may share this post on your site as word needs to get out and I love the fact that there are some in the medical profession that do take the time, effort and care in humanity for the better good of that one individual.

    Thank you to you for your understanding and knowledge..

    X

  • I am glad to know that a dr wants to do tests and get to the bottom of what is wrong with the patient. I have had to fight tooth and nail to see specialists or get Mri scans done. Sometimes it is hard to keep fighting when fatigue takes over. After going back and forth to the drs for constant pain i was reluctantly given a refferal to fibro clinic I had already been diagnosed with fibromyalgia a year before given a leaflet and sent away without any follow up appointments. Amitriptaline was prescribed for pain but made me feel not with it. I think there is a lot of over prescribing instead of actually trying to get to the bottom of helping eg massage, hydrotherapy physiotherapy could help but lists are long. Finally went to fibro clinic bloods where taken and found out i have overactive thyroid causing a lot of smptoms that where unexplained. unfortunately i have found that once i got a diagnosis for fibromyalgia it was blamed for sore throats feeling unwell and no others tests where done. I thought i was having a breakdown as palpitations blurred vision dizziness where making my life unbearable so please insist on being referred to specialist clinics to make sure there is not underlying issues.

  • Extremely interesting post and some excellent responses.

    Certainly a lot of food for thought there and thankyou for posting it lacey :) x

  • Bless you.... I am so sorry you have had this struggle, I fear that it echoes with many of us... and indeed this just shows that Drs are too quick of the mark to put any other "symtom" down to fibro and be dismissive... and leave us feeling that there is no way forward... or then confusing in our minds... We have to be strong and pursue.. we know ourselves the best... and we need to exhaust ( not that we are not exhausted already anyhow) all options and avenues... it takes courage to fight a good fight..

    Hugs and better days for you linksy. x

  • This is a very insightful article. I fear that in the UK many sufferers of pain will be thoughtlessly diagnosed with fibromyalgia without due testing or looking at the problem holistically, and many I'm sure left with no diagnosis while suffering chronic pain if the doctor feel it is not fibro, again without due testing. Apologies for the long reply but I would like to share some thoughts with you.

    I will give you my story as an example. I am 27. For years I suffered with severe bowel cramps to the point of bleeding. After about a year this was diagnosed with IBS. It took them about 3 years to listen to the fact that there was bleeding when they did some endoscopy tests and fortunately found nothing but inflammation. I had been suffering with body discomfort early on when these symptoms were bad. By now, I was feeling pain all over my body, but as I was being treated by a gastroenterologist this was largely ignored and I was now given the diagnosis of Severe IBS. Four or more years later I am struggling to work and a psychologist I see due to feeling awful and restricted in life giving me severe anxiety, who persuades me to talk to the doctors again after so far being hopelessly being ignored about the worsening pain, as she had treated many people with fibromyalgia and thought my symptoms sounded this severe. The doctor agreed it was probably fibromyalgia and I started to get some medication for the pain, years after it starting.

    Fast forward to now, and the doctor is having to consider if I have ME/chronic fatigue as well as fibromyalgia and that it probably started out as this before as they have been advising me for 3 years since the diagnosis to fight through the symptoms with exercise, yet whenever I managed to be active it can knock me out for days or weeks, and my current psychologist recognises many symptoms from ME not fibromyalgia as she herself has suffered fibro, and had a daughter suffer ME, so has had a lot of experience of both- even though some doctors know little enough to think that fibro is simply synonymous with ME, because of the fatigue. This will get them off my back about not doing enough to fight through it even though I have constantly tried as they believe there is a certain threshold you have to get over for the body to suffer less from the effects of fibro, which my fibro suffering psychologist agrees with suffering it herself ( although I have no doubt many sufferers experience otherwise) this would be very bad advice if I do have ME as it is known being active can cause tiredness/ inability to wake from sleep for days afterwards. All the pain clinic have done after a rushed 2 minute appt when they asked me nothing aboutthe symptoms and which it has taken years for me to see, is agree it is fibro and try to put take me off pain meds which help on to drugs I have tried many times before with no help and awful side effects and a lidocaine drip which helped me for about 3 days (and has not been reviewed ever since 9 months later when it is thought to help for up to3 months).

    To cut to the main point anyhow - it leaves me thinking - throughout this lapsidaisicle process of diagnosis have they even got it right? What if It really is something worse like MS? There is one other disease which would explain the gastrointestinal bleeding and pain which they have not tested for. I worry how many other people have been down a route like this with there doctor and specialists and may have had their real condition missed completely, with treatments and advice which could even be making their real condition worse.

    The really peverse thing is that any chronic pain sufferers that do have the wrong diagnosis of fibro would probably have had no access pain medication or treatment if they hadn't been wrongly diagnosed because with the NHS testing just so often isn't done, and doctors and experts so often look at one area of your health usually in their field of expertise not your whole body, not holistically.

    When I have the energy (I hope I do!) I want to gather some evidence of this, as well as for chronic pain sufferers being left without effective pain treatment and expected to be able to carry on regardless, to lobby my MP and the government outlining the problems and putting forward the ideas of more thorough holistic diagnosis for chronic pain conditions, conditions like and including fibro, and also to treat chronic pain as a disease, not something you have to man up and deal with wihtout proper help (ridiculous). I myself from my experience and others i have listened to believe that the NHS are allowing lack of expertise, budget and diagnosis trends get in the way of correct diagnosis and therfore treatment of chronic pain conditions, and that the government is happy to leave vaguery around the qualification for financial support for people who suffer "invisible" chronic pain conditions and cannot work as a result so they have to pay out less.( I digress slightly from the point of this post but it is relevant as diagnosis effects this too - someone with MS misdiagnosed with something else may not get the support they should be entitled to. And I wish to take on the whole problem around the NHS and Goverment policy makers view of these conditions!)

  • I find your message very thought provoking as I have recently been diagnosed with fibromyalgia yet I wasn't asked for a full medical history and only a superficial examination of my neck and back was performed. I was handed a blood teat to be carried out to rule out other possible conditions but was not given a follow up appointment to learn the results of the tests.

    I am a 52 yr old diabetic female (type 1) who also has acute cardiac syndrome, gastro paresis, neuropathy, retnopathy, depression, I have been suffering an inability to sleep for more than 2 hours nightly for 18 months with pains in the shoulders and neck and down the spinal column. I also have very fragmented concentration and twitching limbs, numb hands and itching skin all over the body. I also have a constant headache and brain fog. It pains me to walk and yet previously I used to walk 7 miles a day with no trouble and cannot now sit through a movie as the pain becomes too intense to concentrate on the story line. I have become convinced that at the least it must be more like CFS rather than simply fibromyalgia and my daughter has just been diagnosed with MS and her symptoms and mine are very similar. I would be interested to know what you think and wether I should return to my GP and take matters further.

    Yours Jane

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