Knowing Your Diagnosis
Before you can become an expert patient, a patient who is expert in their own condition and how it affects them, you need to know what your condition is. You need to know your diagnosis.
There are essentially 3 parts to knowing your diagnosis with Fibromyalgia Syndrome (Fibro):
1. Making sure as far as posible that you have the correct diagnosis.
2. Identifying which symptoms are Fibro, and which are due to other conditions you may have.
3. Finding out what Fibro is.
Very few doctors have received any training at all in the recognition and diagnosis of Fibro, and little more have kept up-to-date with current knowledge of the condition. It is therefore not all that surprising that mis-diagnoses are made.
Fibro is only a "wastebasket" diagnosis when doctors use it as such, giving the diagnosis to the patient because they simply do not know what it is wrong. If there is a possibility that you could have something other than Fibro, it should be tested for, but this can be difficult on the NHS.
Because of the lack of training given to doctors about Fibro, it can be hard for doctors to diagnose the condition based on recognising the symptoms and performing a tender point test, which is how Fibro currently has to be diagnosed. For more information on the diagnosis of Fibro, see the About Fibro section of the website.
Another major problem in ensuring you have the correct diagnosis is that having Fibro doesn't stop you from having anything else. In fact, having many other chronic conditions would make it more likely that you would develop Fibro and it is possible that you had something else first, even if it was diagnosed later.
It is very important that both you and your healthcare team keep this is mind and do not assume that all symptoms are down to the Fibro and stop doing investigative procedures because a diagnosis of Fibro has been made. Any new symptom should be checked out with your doctor, possibly with tests being run and even referrals made, and any major new symptom should be checked out as well as it would be if you didn't have Fibro. You may have developed another condition on top of the Fibro.
There are also a number of conditions that may be hard to diagnose from tests, especially early on in the disease process, and conditions such as Rheumatoid Arthritis and Systemic Lupus may get easier to diagnose with the passage of time. Conditions that can be tested for but are not appearing on blood tests are described as being "sero-negative". It is common sense that, if your symptoms worsen significantly, if you develop new symptoms or if you show signs of something not quite like Fibro, that tests - a blood test panel at least - should be run, which may pick up on developing conditions other than Fibro that could not have been picked up on before. If you have a family history of other conditions, such as Systemic Lupus or Rheumatoid Arthritis, then it is especially important that you check that you are not developing these conditions too.
Some of the tests used are known to be inaccurate and so should only be used as an aid to making decisions anyway. The Rheumatoid Factor blood test, for example, which is used to test for Rheumatoid Arthritis and Systemic Lupus, is notoriously inaccurate and a negative result does not mean that you cannot have either of those conditions. Although blood tests are extremely useful diagnostic tools, they are not perfect and if you are showing signs and symptoms of something else going on, this should be investigated fully, even if the blood tests do not show anything.
There are also conditions other than Fibro which can cause similar or overlapping symptoms and do not appear in standard blood tests, but which may be picked up if a physical exam is done by a knowledgeable healthcare professional. Hypermobility Syndrome and Myofascial Pain Syndrome are 2 examples.
There are certain signs and symptoms that could suggest something other than, or as well as, Fibro may be going on. Examples include:
* Regional symptoms. Fibro pain is characterised by being widespread and unpredictable. If you have pain that is localised and predictable, then that may mean you have a specific problem causing the localised pain. Some regional pain conditions, such as tendonitis or myofascial trigger points, can be symptoms of Fibro themselves, but they often need a different approach to treatment than the Fibro itself. Other regional pain conditions, such as degenerative spinal discs, can exist alongside Fibro.
* Inflammation, whether noticeable in yourself, or showing up in the blood tests ESR and CRP. Responding well to treatment with corticosteroids, which are not recommended for Fibro (as stated in the EULAR recommendations for the management of Fibro) is often a sign of inflammation as these medications work by reducing inflammation. Some patients find that their pain and fatigue improve dramatically when given corticosteroids, such as Prednisolone, for other problems such as allergic reactions and this is usually a sign that something other than Fibro is going on.
* Vision problems. Although Fibro may be associated with easily tiring eyes that find it harder to focus because of tired muscles, actual vision loss is not a symptom of Fibro. Having regular eye check-ups is a good idea for anyone, and as well as helping to pick up on eye problems, the eye check-ups can be helpful as eye problems may be a symptom of something more general that could be having an impact on your overall symptoms. Glaucoma is associated with Stage II Diabetes for instance, which also has fatigue as a possible symptom, and Multiple Sclerosis can cause vision problems as well as pain and fatigue.
* Positive test results! Fibro does not show up on any standard blood tests, so any positive results may mean that something else is going on. At the very least these should be monitored.
Learning about your test results is an extremely effective way of staying in control of your healthcare. Some doctors do not immediately tell patients they have had positive test results because they do not think that they are significant, but it is good to make sure that you know what is going on. When you get sent for blood tests, write down a list of which tests the doctor has checked on the form so that you can look them up. When the results come back, you can ask your doctor for a copy of the actual results so as to keep your own record and make sure that when the doctor says "they're fine", they actually mean all the tests had negative results. Websites such as medicinenet.com and labtestsonline.org can be very useful in looking up what tests are for and what the results mean.
Which symptoms are what?
It can be extremely hard to work out what symptoms are Fibro and what symptoms are other conditions, even if they are themselves caused by the Fibro, but doing so enables you to tailor your treatments effectively. The task of working out which symptom is what is made even harder by the long list of symptoms of Fibro available on the internet that include the symptoms of all possible secondary conditions too.
Often the best way to learn to tell which symptoms are what is by noting what happens when you take or use an effective treatment for one condition or one part of your condition. If myofascial release massage relieves your headaches and the weakness in your arms, for example, then you can learn that these symptoms may be due to this rather than the Fibro itself and get treatment accordingly. If you have an inflammatory condition as well as Fibro, then corticosteroids will help the inflammatory condition, but not the Fibro.
What is Fibro?
Many people come away from being diagnosed with Fibro without much of an idea what the condition is. Finding out details can sometimes take patients years and often required them to see a Fibro expert of some kind.
It is generally agreed that the condition develops, often after a trigger event or series of events, and changes how the brain and central nervous system work, which then leads to further changes in the central nervous system. These changes disrupt levels of various neurochemicals, which then cause many of the symptoms, as well as leading to more disruption of the central nervous system. How the central nervous system processes pain is a key part of Fibro, and it is generally agreed that Fibro is a central processing disorder, sometimes called a central sensitisation syndrome because the changes mean the central nervous system becomes overly sensitive.
For example, raised levels of the chemical substance P, which helps transmit pain signals, contributes to you feeling pain when you shouldn't and feeling more pain than you should from painful stimuli. Low levels of available dopamine contribute to or cause many of the symptoms of Fibro, affecting movement, cognitive function, mood, sleep and pain. Dysregulation of the HPA (hypothalamic-pituitary-adrenal) axis affects your reactions to stress, as well as disrupting digestion, mood, and energy usage. Reduced availability of opioid receptors in the brain means that opioid medications are less effective. These are just some examples of what is happening with Fibro.
Next in the series of articles on Becoming an Expert Patient will be Dealing With Doctors.
Note from Lindsey ~ reading this I've realised quite how much our understanding of Fibro has clarified over the last 4 years. All of the above is correct, but our understanding now of how the over-stimulation of the Autonomic Nervous System ties everything together has developed since I first wrote the above article.