I get that quite often from medical professionals when I am at one of my many appointments or phone calls trying to explain the amount of pain I am in at any given time of day!!
I have gone with the flow and had all the scans, blood tests etc and still there is nothing that explains all the things that I feel on a day to day basis.
I am so tired and frustrated with it all, really don't know where to turn next.
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Hi, MC: Well - welcome here on the forum, and praps "Welcome to Fibromyalgia Land", altho that may sound too sarcastic: Your hunch for joining is being proven bit by bit with every scan and blood test that doesn't explain the pain, cos that's of course essentially how fibromyalgia is diagnosed: widespread chronic pain that can't be explained otherwise, with a few other annoying things thrown in for "good" measure.
Several possibilities, e.g.:
1) These docs are saying it is fibromyalgia, but that (they believe) it is a condition that is caused by a hyperactive central nervous system (theory of "central sensitisation"), as there is no visible tissue or nerve injury, which might sound like "it's all in the mind" when we're not familiar with it. In this case you could have a look at this theory and the other ideas about the cause of fibromyalgia (and talk with the docs about that).
Or 2) They are ignorant about fibromyalgia and believe it is psychosomatic. In this case you could get one of the flyers on the FMA UK website to educate them, better not outright telling them they are behind the times.... Have you asked about fibromyalgia at all?
Or 3) They are telling you that like any pain condition your pain can be managed better with "pain management", which can entail psychotherapy like CBT and ACT, various types of relaxation and learning how pain works. Which is proven, but not the whole story: some people with fibro can also be helped my meds, some with supps, some with diet, and all with trigger hunting, keeping to the sweet spots and gentle physiotherapy etc.
How ignorant they are often depends upon their specialization, e.g. normal orthopedists and endocrinologists I've found are pretty low-brow.
If you are not satisfied with your docs, I gather the main way of getting round that and the lack of referral and waiting times on the NHS is to go private, e.g. to Chris Jenner's clinic in London, get the diagnosis and treatment recommendations for your docs there.
Report finds fibromyalgia \"Not all in the mind\"!!!!!
my doctor is no help at all
I've finally lost my mind!
Losing all feeling in my hands
