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Fibromyalgia and You. What does a Diagnosis Mean?

By Edited Nov 13, 2013 0 0


It can be a huge relief to finally get a diagnosis:

You finally have an easy name for what you've been going through for years. You have fibro. You are  relieved that you do not have a degenerative condition which will deteriorate. You have been suffering all the symptoms of fibromyalgia – pain all over, back pain, muscle pain, fatigue, and brain fog. And you have also experienced many of the conditions often associated with fibromyalgia like irritable bowel syndrome, increased urinary frequency, restless legs, migraines, depression and anxiety. But you never had an explanation and your mind went wild with self-diagnosis, adding to your stress and anxiety. But now you have a diagnosis. You can stop worrying about all the other illnesses you have come up with on your own, like arthritis, cancer, Alzheimers, leukaemia, lupus, liver problems etc.


No more specialists

All those years of visiting one specialist doctor after another, having to repeatedly explain all your symptoms, are finished. You won't have to worry any more that the doctor thinks you're just a hypochondriac or malinger, or is wishing he/ she could just get onto the next patient.


No more tests

You have undoubtedly had years and years of tests that showed nothing and visits to specialists that proved nothing– and each time you had to come back and face your primary doctor with : But then what's wrong with me? Now you can put all those ultrasounds, liver scans, body scans mri's and blood tests behind you. And they were all negative so you're probably in pretty good shape apart from the fibro- right?


Explain to Family and Friends

You can explain to your family what is wrong, how they need to be patient with you, and how you're trying hard to adapt, and pace yourself to still have a full family life. You can stop feeling guilty and that maybe your tiredness and pain is just another way of saying I couldn't be bothered. You can tell other people that you have a diagnosis. You have fibro. You're not just the boring person who has cancelled social engagements at short notice, or who can't commit to too many things at once. You're not being lazy when you don't always volunteer to help out on committees and community activities.


Taking Control

Much of your treatment is down to you now- pacing, exercise, cognitive approaches. While doctors will help with drugs or severe pain management, you are in the driving seat when it comes to managing your disease. This can be hugely liberating.


Adapt Your Job

If you are off work 'until you get better' you can now go to your employer and see if your job can be adapted to suit you. For example cutting down on hours may help, or delegating heavy lifting. Your employer may even find that you work more efficiently if allowances are made for fatigue and pain.


On the minus side:

While your disease is treatable there is not yet a cure for fibromyalgia. You may improve over where you are now, but you are unlikely to get back completely to where you once were. You may have to let go of plans or aspirations which may or may not have been achievable. You are unlikely to be given a clean enough bill of health to climb Everest for example, or swim the channel. Do not pretend these things don't matter- you need to grieve for these losses.


Some of the things you've let slide 'while you've been sick', and that you'll 'get to when your better' may now have to stay at the bottom of the slide. If you're a keen gardener and your garden is disappearing under weeds for example, you may need to get someone in to build you a 'low maintenance garden' that you can still enjoy. The loss of the hopes and dreams you had for much-loved hobby can be gut wrenching.


Suddenly it can be harder to look forwards. You may find yourself looking back to when you were well and wanting to go back there. Instead, find new ways of still doing the things you like and as you are engaged in them, you will find new interests and delights. Don't try to look too far forward instead plan some treats and set achievable challenges for the near future.






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