another unhelpful ignorant comment

"I can't imagine that a colonoscopy is of any use re fibro investigation. Did they really do that to help diagnose fibromyalgia?"

received this yesterday by email from family member who should know ive had fibro since diagnosed with it in 2005 and the many other symptoms I have since 2011 remain undiagnosed cos drs refuse to accept what I tell them after doing my own research when they claim "!they don't know" .

so no way is it under investigation .3 consultants(and gps) haven't given me any answers only telling me what things are not.with acess to the internet if I can research different conditions maybe drs should too-have they trained for so many years to tell people "its not ......"?

12 Replies

  • Well that was an unwelcome comment and from a family member too. As for consultants and GP telling you what you don't have that is often how it works as things are ruled out eventually something flags up, it can be a long process, not much help but we are all here. XX Lou

  • thank you Lou.dont know where I would be without support or everyone gripe is they do bloods based on symptoms btu then ignore the symptoms cos bloods are normal and refuse to do any further investigation.i know there are sero negative conditions yet they don't consider that or that fibro doesn't cause inflammation ,but raynauds secondary to lupus ,CTS and acromegaly(nto saying i have this but does account for nasal swelling and other swelling etc.printout of it given to gp so hope that will make them take me seriously

  • Oh man, that is no kidding. I am taking a list of *all* my symptoms and med recommendations when I go to see my doctor. I know he has not done as much research as I have - and doesn't have this forum. He cares but he just doesn't really understand . . . and I am going to ask him if he believes me.

    IBS is listed as one of the common diagnoses in fibro as you know. So hard to get family, friends, doctors, to get it, isn't it?

  • Hi anbuma

    I am really sorry that you have been forced to endure yet more unhelpful stuff from people as it really is the last thing that you need!

    Take care

    Ken x

  • Hi again, its horrible that you are not taken seriously, as I have said before it took over 18months of me driving doctors mad and finally I worked it all out and basically told them what was wrong. hang in there.

  • have given printouts on acromegaly,lupus and something called orofacial granulotosimis(?)don't know spelling.tongue now swollen again ,more pressure on left ribs(gp said this is from Hiatus hernia)and cough back again (when lying down-also HH),phoned for appointment none with my gp or the one who arranged colonoscopy have to phone again tomorrow

  • It took me over 2 years to get them to test me for a worsening lung condition. They kept saying all my problems were my heart conditions even after my cardiologist sent a letter about his concerns about my breathing.

    Be Well

  • Hi Anbuma, it's hard when an unnecessary comment is made, I feel that if it's not about them they don't care. I have given up saying anything about pain or how I'm feeling to certain people because they are not interested. The same people, however, expect me to be sympathetic to them over the slightest thing. Anyway, moan over, I hope you are feeling as well as possible, (the swollen tongue thing is a horror, isn't it :( , I didn't realise it was another of the wonderful things this delightful disease gives us), take care hugs Linda x

  • hi linda

    a swollen tongue could be one of several things.dont think its fibro cos fibro affects joints an d

    muscles-doesn't cause inflammation?/so others have said

  • Hi Anbuma, thanks for that I'll get it checked out next time I'm up at the doctor's. I've got into the habit of blaming everything on fibro or EDH, because most new things are because of them. Hey ho, another trip to see if they know what it is, take care hugs Linda x

  • Wow, I think I know how you feel. I was diagnosed long ago after undergoing years of different tests (lupus, fibro, etc) I moved to another state and suddenly they don't believe me. I just ask.. Did you not read my file? Family members are the worst though as you say. We expect their support and caring but they think we're hypochondriac. I hope that this gets better for you. It sure hurts to deal with this daily THEN deal with outside people.

  • Please note this is from 2 years ago do we need to revisit it?

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