HELP – I THINK I HAVE THIS CONDITION
So you've made the 'classic' mistake of reading through literature on Fibromyalgia and matching it up to your symptoms. Well, you're not alone in that one. However, you need to be aware of some important issues before you tell your GP of your (self) diagnosis. Firstly, at any given time 2/3 of any population will have one or more of the symptom that are possibly related to this condition. Secondly, although you may feel your symptoms are classic or extremely similar - this is not a diagnosis you want to be given before absolutely every other possibility is exhausted. Thirdly - some symptoms of Fibromyalgia can be identical to some other more serious (and equally difficult to diagnose) conditions. Fourthly - once you get this diagnosis every symptom you present thereafter will be put down to it. And lastly - you may not have it AT ALL!!
So who should I see?
Many various specialists are suddenly diagnosing Fibromyalgia and as a patient you have little means of ascertaining whether their diagnosis is sound. You should ideally see a Rheumatologist who will provide a sound diagnosis for or against FMS and will also ensure that all other possible conditions of this nature are excluded.
Can my GP diagnose it?
Can my GP diagnose it?
Some GP's have enough knowledge to understand the basics of the condition, but many don't respect the fact that the symptoms are very similar to other more serious conditions. You as the patient should take some responsibility for your own healthcare and make sure you are well informed about whatever condition you are diagnosed with. If you then get symptoms you are unsure are part of your Fibromyalgia complex, you can hint to the GP that you would like to be referred to a Rheumatologist - you have that right as a patient although your GP equally has a right to not refer you if he feels it isn't warranted.
If you are desperate and are getting nowhere with your GP, it may be worth considering going privately, but be warned - you may pay upwards of £120 and come away after a 15 minute speedy consultation with little more information than you went in with. Consultants rarely do tests on the initial appointment so it would be prudent to see one who is willing to review you on the NHS. Ask their secretaries for that type of information.
What will a specialist do?
A good consultant will listen carefully to your history - help them by writing out a list of the background to your particular case. The more info you can provide without going overboard the better. They should give you a physical exam and check you for tender points - these will be very obvious to both you and the doc - areas where muscle join onto bone that in a 'normal' person wouldn't cause any discomfort, but which in us, are usually excruciatingly tender.
They will more than likely also check some other aspects of your health and you should have a battery of blood tests taken - ask what ones in particular he/she is looking at. Get informed - if they tell you something you don't understand, ask them to explain - don't have blood tests without knowing exactly what they're for and make sure you get the full results - ask for a copy if available.
If you have Fibromyalgia don't expect to be put under routine review (in the UK at any rate) - most likely you will be given the diagnosis and told there is little available to help you - you will probably be offered a prescription for amitriptyline or a similar antidepressant drug for your sleep disorder and told to take whatever pain relief works (that's between you and your GP) - and that will be IT!!!
Who else can help?
Who else can help?
Your consultant will determine whether you might be able to get some additional help in the areas of physiotherapy in particular - hydrotherapy may be offered or other modalities. If you have a lot of problems coping at home with simple tasks like standing in the kitchen cooking, or using kitchen equipment e.g. kettles, getting around your house or similar issues, then you should contact your local Occupational Therapist Community Manager who will organise a home assessment of your needs and perhaps provide you with equipment to assist you to cope better.
A community District Nurse can be requested for certain comfort problems e.g. if you find your mattress is causing you more pain than enough and preventing you from sleeping due to 'contact' pain - you may be able to get a pressure care relief mattress - this depends solely on the discretion of the Nurses. A Social Worker is also useful to get involved in your case as again, they can assist with various areas - they are the ones responsible for organising the Home Help scheme and also if you require meals delivered etc.