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It took a while to diagnose as its a fairly imprecise illness. The person has other problems as well which have some of the same symptoms so that made it difficult, also he was not being seen by a rheumatologist...I think his diagnosis was along the lines of "I think it must be this that is causing some of your problems, the treatment is this so try it and see if things improve" Please keep in mind that I got this info from the patient and not the doctor, so I don't know whether that was just the way(s)he put it or my friend's understanding.
Woofgang, are you sure it was FIBROmyalgia and not POLYmyalgia that your friend had? They are completely different. Polymyalgia is an inflammatory condition, and is certainly treated with steroids, sometimes quite high doses. Blood tests show a high level of inflammation going on.
In comparison, Fibromyalgia is a chronic pain syndrome of unknown cause, characterised by fatigue, sleep disturbance and multiple painful trigger points. It can be secondary to rheumatoid arthritis, but more usually associated with osteoarthritis or chronic back pain, or may occur with no identifiable cause. There is a school of thought that it may be a primary sleep disorder - certainly research shows that in otherwise healthy people, interrupted sleep can give rise to fibromyalgia-like symptoms. Blood tests usually show no inflammation. It is diagnosed by excluding anything inflammatory, and having at least 11 out of 18 recognised tender points.Occasionally steroid injections may be used to settle down trigger points, but they have no lasting effect.
Bad news is that there is no cure for fibromyalgia, and very few effective treatments. Good news is that the symptoms are variable, and for every bad day there will always be a better one. You're right, noddy, management is the key to it (which doesn't mean grin and bear it, it means tailoring your activity to your symptoms and planning ahead.) Try and get your doctor to refer you to physio and occupational therapy for advice on learning to make the most of your energy and keep pain to a minimum. If there's a multidisciplinary pain management programme in your area that may also be useful.
In comparison, Fibromyalgia is a chronic pain syndrome of unknown cause, characterised by fatigue, sleep disturbance and multiple painful trigger points. It can be secondary to rheumatoid arthritis, but more usually associated with osteoarthritis or chronic back pain, or may occur with no identifiable cause. There is a school of thought that it may be a primary sleep disorder - certainly research shows that in otherwise healthy people, interrupted sleep can give rise to fibromyalgia-like symptoms. Blood tests usually show no inflammation. It is diagnosed by excluding anything inflammatory, and having at least 11 out of 18 recognised tender points.Occasionally steroid injections may be used to settle down trigger points, but they have no lasting effect.
Bad news is that there is no cure for fibromyalgia, and very few effective treatments. Good news is that the symptoms are variable, and for every bad day there will always be a better one. You're right, noddy, management is the key to it (which doesn't mean grin and bear it, it means tailoring your activity to your symptoms and planning ahead.) Try and get your doctor to refer you to physio and occupational therapy for advice on learning to make the most of your energy and keep pain to a minimum. If there's a multidisciplinary pain management programme in your area that may also be useful.
Thank you for your detailed answer Kit,very good of you.Yes all the things you mention are true - pain,exhaustion,sleep disruption & more besides. I have had tests for inflammatory disease & have regular blood tests for other reasons. Nothing ever shows up.Having a label for it won't miracle it away but at least I'd have something to explain to the alternative therapists which I am looking towards trying,particularly accupuncture.Have already seen a physio with the back pain & he certainly helped.As you say there are good days & then wind me up & watch me go!!
Interesting that your friend had steroids, Woofgang - they're not much used now, they used to be, but the results weren't great on the whole. In fact now the research evidence suggests that they don't really work for fibromyalgia. Hope he got some relief though.
Good to hear that you're getting good days, Noddy - do beware of going like a mad thing when you're feeling good though! A lot of people with FM go "boom or bust" - it's such a relief to have a day when energy levels are up and pain levels are down that they zoom around doing all the stuff they've not been able to do for a while, and then pay for it big time afterwards. This is OK if e.g. you overdo things on a Friday and can spend all weekend recovering, but not so good if you have things planned that you have to put on hold because your body won't let you do them. This is where the occupational therapists come in - they are experts at analysing what you do and how you do it, and can suggest more efficient ways of doing things, perhaps organising your timetable a little better, and maximising what reserves you have. The art is to be able to do what you need and want to do, without feeling like you've done 10 rounds with Lennox Lewis afterwards! Overdoing it won't do you any harm, but it will cut down on your overall activity levels, because it always takes longer to recover from doing something than it took to do it in the first place.
Good to hear that you're getting good days, Noddy - do beware of going like a mad thing when you're feeling good though! A lot of people with FM go "boom or bust" - it's such a relief to have a day when energy levels are up and pain levels are down that they zoom around doing all the stuff they've not been able to do for a while, and then pay for it big time afterwards. This is OK if e.g. you overdo things on a Friday and can spend all weekend recovering, but not so good if you have things planned that you have to put on hold because your body won't let you do them. This is where the occupational therapists come in - they are experts at analysing what you do and how you do it, and can suggest more efficient ways of doing things, perhaps organising your timetable a little better, and maximising what reserves you have. The art is to be able to do what you need and want to do, without feeling like you've done 10 rounds with Lennox Lewis afterwards! Overdoing it won't do you any harm, but it will cut down on your overall activity levels, because it always takes longer to recover from doing something than it took to do it in the first place.
You are so right Kit, that's exactly what I do,especially on such a lovely day as this.I can't stop myself once I'm in the garden & then I take days to get over it, but as you say the good days are like being freed from shackles! I wish more people knew about this as you obviously do, when you look OK it's so hard to convince anyone how you feel.
Glad to help, Noddy - I see a lot of people with FM and chronic pain because it's my job. It can feel very lonely, because nobody seems to have heard of it, but believe me you are certainly not alone. Things are getting better - at least most doctors now believe that FM actually exists, which is better than it was 15 or so years ago! It's only a matter of time before FM becomes as well known as migraine, and getting other people to understand your problems won't be so difficult. In the meantime, keep on keeping on!
Fibromyalgia syndrome is a common and chronic disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms. Research shows that people with fibromyalgia typically see many doctors before receiving the diagnosis. One reason for this may be that pain and fatigue, the main symptoms of fibromyalgia, overlap with those of many other conditions. Fibromyalgia is a chronic condition, meaning it lasts a long time possibly a lifetime. However, it may be comforting to know that fibromyalgia is not a progressive disease. It is never fatal, and it will not cause damage to the joints, muscles, or internal organs. In many people, the condition does improve over time.
Physiotherapist Bergen county - http://
Physiotherapist Bergen county - http://
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