This article is going to be an overview on the condition fibromyalgia, what it is, how it is diagnosed, what the treatments are and a little discussion on the psychological aspects of the illness.
What is Fibromyalgia? and The symptoms of Fibromyalgia
This is the name of a condition that is listed as one of several ‘chronic pain’ illnesses.
They are a difficult group of conditions to treat and diagnose, but they are all characterized by symptoms of long term pain and tiredness, often alongside other chronic health problems.
‘Chronic’ in a medical sense means over a long period of time, to contrast it with acute illnesses, which appear suddenly and are usually gone pretty quickly too.
The name has a Latin derivation, and means ‘painful’ (-algia) ‘muscle’ (my- or -myo) ‘tissue’ (fibro).
Specifically, people with fibromyalgia exhibit many painful spots on their bodies that are constantly sore.
These places are often referred to as trigger sites, and the slightest touch may set them off with a burning, aching pain that nothing relieves.
In general, the skin becomes extremely sensitive to pain. Even simple bumps or knocks are not only more painful than they seem to merit, but the pain goes on much longer than it ought to.
Many sufferers may also get muscle spasms, and increased stiffness in their joints.
Sleeping doesn’t seem to make them rested, and their sleep is often interrupted by the spasms they sometimes get, or by their pain.
Unsurprisingly, this has a huge impact on their general happiness, so depression often walks hand in hand with these symptoms.
Concentration may also be reduced, so it’s hard to remember things or focus on even simple tasks.
Even though feelings of tingling, swelling and pain are extremely common, there are no actual changes to the body in fibromyalgia - the feelings of swelling are caused in a similar way to the feelings of pain, by some kind of malfunction in the nerves that transmit and receive the messages.
Amongst all these problems, fibromyalgia patients often have a range of other chronic problems such as anxiety, irritable bowel syndrome, chronic fatigue syndrome, premenstrual syndrome, tension headaches and others.
All of these can be very debilitating for the patients, and they are all difficult diagnoses to make correctly, which can cause problems with the doctor-patient relationship. I shall come back to that at the end of this article.
What Causes Fibromyalgia?
One of the biggest problems with this illness is that its cause is unknown.
There is no test that can prove that you have it, and there is almost no indication in the body that any disease process is taking place - the nerves and muscles are unchanged in appearance, there are no altered blood levels of specific chemicals to look for.
In fact, the patients may even appear frustratingly healthy to a doctor, although they are obviously tired and unhappy.
The problem is clearly to do with the way you feel pain.
Exactly what is going wrong is not known or understood, although it does seem like fibromyalgia sufferers have increased levels of the chemicals that transmit pain messages through the nervous system in their spinal cords, but this isn’t something reliable enough or easy enough to measure that it would make a useful test.
There have been indications that certain chemicals in the brain do change their levels.
Specifically, these are chemicals are hormones that act as neurotransmitters, which are the chemicals that nerve cells release from their surfaces at the points where they touch other nerve cells.
These chemicals, when released from one cell, cause the cell they are released against to fire, sending a nerve impulse.
The chemicals that have altered levels in fibromyalgia are dopamine, serotonin and noradrenaline (also called norepinephrine), and they are all important in the way your brain regulates mood, attention, sleep cycles and concentration.
The difficulty in using levels of these chemicals to diagnose fibromyalgia is that they are all reduced in a number of other conditions, notably depression.
As depression is a common finding in fibromyalgia sufferers, it’s very hard to say whether the fibromyalgia has caused the changed levels of chemicals, or the depression, and even harder to say which came first!
This is important, as there is some evidence to suggest that depression can cause fibromyalgia, as well as the other way around.
In some cases, the fibromyalgia can be set off by an external cause, like an illness or an injury.
There are specific links to the diseases Lupus and rheumatoid arthritis as triggering factors. In others, there seems to run in the family, which may mean there is a genetic factor to it.
The pain gate theory of Fibromyalgia
There is a theory of the way in which pain is transmitted to the brain which describes groups of pain-transmitting nerves along the spinal column as being ‘pain gates’, and refers to these gates being open or closed.
The nervous system is very cleverly arranged in the body so that rather than relying on a single nerve impulse going all the way from the skin (or whichever part of the body it’s coming from) to the brain, there are usually clusters and junctions of nerves that act like filters or local computers.
These help the body start to process and make sense of the information it is receiving even before it reaches the brain, and it helps the body ignore accidental impulses or insignificant ones.
These gates are there so there is a level of control over sensation - if an area of the body is going to be in a certain level of pain over a long period of time, the body will tone down the signal it gets from that area - it’s not new information, so it’s less important to the brain to have it continuously repeated by the nerves in the skin.
It doesn’t always quite work properly, though, and sometimes these pain gates, rather than closing down as they should once the information is presented, get stuck open, allowing a torrent of pain messages to continue reaching the brain.
This is one theory of what causes fibromyalgia, although it is more of an explanation of why the pain continues to occur rather than what causes the gates to get stuck open.
All in all, the symptoms are many and the signs are few - the patient can report an awful lot of misery, but there are no physical signs on the body the doctor can spot.
This means that the first thing a doctor might try doing is making sure it isn’t something else with similar symptoms, such as rheumatic arthritis or chronic fatigue syndrome (also called ME, or myalgic encephalomyelitis), which also exhibit tender spots on the body and cause chronic tiredness.
Much of the important information comes from the history of the pain.
You will probably not be considered to have fibromyalgia until your pain has been present for at least three months, and is widespread, appearing both above and below the waist and on both sides of the body.
Otherwise, it is very likely that the pain has a different cause.
You will also not get the diagnosis unless you have around eight or more tender trigger spots on your body (although this is a slightly flexible number, and it varies in different countries).
What can be done for Fibromyalgia? Fibromyalgia and it's Treatment
The bad news is that there is no instant cure, and will likely be no specific cure until the cause of fibromyalgia is properly understood. Treatment is therefore to manage the symptoms and make life bearable for the patient, and usually to treat any underlying problems at the same time.
The good news is that there are lots of gentle treatments that will help people with fibromyalgia.
The pain will usually respond to ordinary painkillers like paracetamol. If these are insufficient to remove the pain, your GP may prescribe you more effective ones.
Drugs like ibuprofen can help too. They are in a class of drugs used to treat pain and inflammation called NSAIDs (that’s non-steroidal anti-inflammatory drugs), but there’s no inflammation to treat in fibromyalgia, so they won’t really do much by themselves.
Fibromyalgia responds very well to gentle exercise regimes, such as swimming, regular walking, stretching and cycling. Now, if you’re feeling sore all over and exhausted, that’s probably one of the last things you feel like doing, but it has been proven to make a big difference. It’s important not to overdo it, the stress is very much on ‘gentle’, but finding time to get a little exercise in a regular routine makes a big impact on your pain and fatigue, not only improving them but also helping to provide a regular sleep pattern.
Speaking of sleep, it may be that your doctor will prescribe medicines to help you sleep, with or without muscle relaxants depending on whether you have been experiencing stiffness and spasms or not. These are likely to be medicines you can buy yourself over the counter, although it’s possible you may also get short courses of sleeping medicines if you need something else during a bad patch.
It is very common to have antidepressants prescribed for fibromyalgia. These will be from one of the classes of antidepressants that act by raising the levels of specific neurotransmitter hormones in the brain - the serotonin, dopamine and noradrenaline hormones I mentioned earlier. Exactly which one will suit you depends on the exact presentation of your fibromyalgia.
Remember, fibromyalgia has certain similarities with depression. It is not that they are the same, or that one always causes the other, but they do seem to often occur together. The medicines that treat one will treat the other, and improve the condition regardless of which came first or if you have depression or not, which is the important thing to remember here.
Remember the Pain Gate theory I described above? Well, certain other sensations from the skin are transmitted through the same gates, and it’s possible to fool them by manipulating the skin in the same area. Therapists have used all sorts of other sensations (vibration, heat, acupuncture and others) to confuse the pain gates, distracting them from the pain sensations they’ve been transmitting. The body likes to respond to new information, and nerve systems often respond more to new a new stimulus than to an old one. With gentle vibration or massage, for example, if you get the level just right, it will drown out the pain signal, almost like transmitting a radio signal at the same frequency so it jams an old broadcast.
Some herbal and alternative therapies, like acupuncture or aromatherapy, have also had positive results. As ever, though, there isn’t much evidence to prove this, which makes doctors rather hesitant to recommend them outright. They may work wonders for you personally, and there is nothing to say they will do any harm, but they could also prove an expensive waste of time.
The Doctor - Patient Relationship in Fibromyalgia
Because it is a diagnosis of exclusion (which means you have to rule out everything else first) and because there is no specific test to prove you have it, fibromyalgia can be really frustrating for the doctor and the patient.
On one hand, the doctor may seem to be telling someone in real distress, who is asking for help, to sit about without any treatment or answers while they do a lot of pointless tests.
On the other hand, a doctor can become annoyed with a patient who insists there is something terrible and serious going on when they cannot find any evidence of what the patient is reporting, and this in a patient who seems extremely healthy!
It’s a difficult situation, and one that calls for a lot of patience and respect on both sides.
On the doctor’s side, unfortunately, doctors often lack patience because they are stressed and trying to deal with the problems of many other patients at the same time, sometimes those with easily diagnosed and treated conditions (which are much more satisfying to treat - instant results and happier patients!), or those whose conditions are likely to seriously harm the patient if left untreated.
Fibromyalgia is a serious problem, but isn’t life threatening in the way that heart disease or cancer could be, and so some doctors may feel that their time is being wasted on someone who is complaining about a minor ailment.
On the patient’s side, equally unfortunately, someone being told to be patient by a doctor who is trying to help them and trying to make a very hard diagnosis to get right can feel ignored and sidelined, which often makes patients angry and sometimes unreasonable.
This doesn’t make them very easy to help or communicate effectively with.
People sometimes feel that if they are being given an antidepressant, it must mean the doctor thinks they are making this pain up, and that there’s nothing really wrong with them; this may even mean they stop taking the pills, which means that a useful treatment is being wasted.
Doctors get very annoyed if the medicines they have prescribed are ignored - if a patient has been offered help, it seems very ungrateful when that help is refused.
As the patient can also have a number of other problems (irritable bowels, headaches and so on), consultations with the patients can take a very long time compared with less complicated illnesses, and this also tends to make tempers fray.
The treatment can take a long time to balance correctly, and it is likely that you will need to continue on the treatment for a long time.
There is no cure, remember, so the therapies that work will have to carry on working, and if you stop taking them or change the way you take them, the pain will probably come back. And that takes a lot of patience too!
There’s some evidence to indicate that fibromyalgia may be almost a sort of learnt behaviour problem. I don’t mean that a patient is faking the symptoms in order to get sympathy, or even that it is a conscious choice to do it, more that the brain (which is still not a brilliantly understood organ) may get stuck in a particular pattern of working. For whatever reason, it makes much too much of the pain messages it receives, and perhaps forgets why it thought it should be doing that, or doesn’t realise that the original cause has gone.
Problems like that do respond to drug treatments, but it can also be important to change the way you think about your illness. It is still an illness, even if it is caused by the brain, and it is not the same as imagining something or making it up. One of the hardest things to do is convince yourself that you aren’t really unwell when your brain is telling you otherwise! But if you can somehow manage to do that, you will certainly beat the disease.
It’s this aspect of trying to treat fibromyalgia that probably causes the most misunderstanding and frustration between doctors and patients, because it’s a difficult point to explain to a patient without sounding like you don’t really think they are ill, and it’s very hard to believe it when you are in very real pain.
Summary of this article on fibromyalgia
Fibromyalgia is a difficult illness to find, to treat, to understand and, most of all, to have.
Fibromyalgia will take time and patience to effect a recovery, as well as careful discussion with an understanding doctor.
But don’t lose heart. There is plenty of advice and help out on the web that is worth looking for, and you may also be able to pick up helpful leaflets from local surgeries or hospitals.
Surprisingly simple things like mild painkillers and gentle exercise can help enormously, and there is plenty you can do for yourself without ever having to go near a doctor!
Main write by Dr. James D. Hogg, (BSc Oxon, MBBS & BA Hons), medical doctor, and minor rewrite by D S Urquhart.
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