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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Toronto, ON

I'm getting really frustrated and being called by some a fake because I don't have the same FM issues that so many do.

Yet I have had a rheumatologist dianose me with Fibromyalgia and my GP agree that in part the signs fit (but not 100%) when it comes to the pressure points being tender or outright painful.

I do not have chronic fatigue going on, I get tired but it's never overwhelming. I'm in 24/7 pain but it isn't all over my body it is localized to a few areas (lower spine/Hips and… read more

May 5, 2017
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Answer Summary

Members rallied around someone questioning their fibromyalgia diagnosis after being called a fake for not experiencing the full range of... Read more

Members rallied around someone questioning their fibromyalgia diagnosis after being called a fake for not experiencing the full range of symptoms, with the overwhelming consensus being that fibromyalgia presents differently in everyone and no one fits every symptom perfectly. Several members shared their own experiences of having localized rather than widespread pain, varying levels of fatigue, and different combinations of the many possible fibromyalgia symptoms, with one member noting that even among 27 commonly documented symptoms, each person's presentation is unique. A recurring theme was reassurance that a specialist's diagnosis should be trusted, that symptoms can evolve over time, and that anyone doubting your experience isn't worth your energy or explanation.

A MyFibroTeam Member

You can always get a second opinion as to weather your diagnosis is correct. You have to remember though that most of us have some of the same symptoms but not all of them. My symptoms started in my right leg then went to my arms. Now my I have symptoms all over at different times. Also a lot of us also have other conditions such as arthritis which adds symptoms to the mix. I've often though that if all the conditions that come with fibro would go away the fibro wouldn't be so bad. It's the cumulative effect of all the different conditions that makes it so bad for most of us.

May 5, 2017
A MyFibroTeam Member

This is a deteriorating, debilitating condition. Just because you don't have it today, doesn't mean you won't have it tomorrow xXxX take care x

May 6, 2017
A MyFibroTeam Member

I also feel a lot like you, is this me am I really ill do I have this illness/ I guess its part of coming to terms with the diagnosis. I know that I have deteriorated since the diagnosis and although I seem to manage the basics of life I do really struggle now and then. Partly that's mood but also tiredness but I have never had a situation where I can't get out of bed due to exhaustion that's just not me so I struggle with the diagnosis too. For me being on this site has helped because I'm talking to people who have similar difficulties and that helps me relate to myself. You're not alone in doubting yourself though.

May 5, 2017
A MyFibroTeam Member

You may not have all the pressure points. So you would only have pain in the areas that are affected. To be diagnosed you need to have 11 out 18 pressure points. I have 16, You should check on line to get info there is usually a picture of where the pressure points are. There are many symptoms or side effects that can go along with fibro. I have chronic fatigue as well as fibro, so I am always exhausted. Hope this helps

May 6, 2017
A MyFibroTeam Member

The pressure point test has been ruled to be unsafe in making a diagnosis so wouldn't worry about that if I were you.If the specialist (rheumatologist) says that's your diagnosis then I would say go with it. I don't think anyone fits the pattern 100% and when I discussed with my GP that I didn't seem that bad compared to other sufferers he said it may be because I have different coping styles than them. Hope you feel better soon.

May 5, 2017

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