"Pain Fobbed off by Drs constantly"

A few years ago my mum was diagnosed as having rheumatoid arthritis as well as having a historical diagnosis of fibromyalgia, connective tissue disorder and various other ailments.

At a recent QEUH rheumatology appointment we discussed the possibility of a diagnosis of another possibly related condition which could explain a lot of the symptoms that are present. We were advised that genetic testing was possible for certain forms of this condition and blood were taken and sent to the genetics lab. Our understanding now after approx 8 to 12 weeks of worsening excruciating pain is that rheumatology have said that they can do nothing for the pain and suggested attending the pain clinic (we have already done this and again were fobbed off with nothing we can do - option was to reduced medication and to attend a group to talk about pain ...... neither of these suggestions were helpful and left myself and mum feeling extremely distressed. )

We have now also discovered that the genetic clinic at the QEUH have declined to see my mum and feel that testing is not appropriate and they dont feel she could have this condition so they have refused to send a sample for any further testing or investigation. How can they possibly make an informed decision without even seeing a patient face to face. Feel at a total loss as to what to do or who to turn to. Is she just supposed to be in a constant state of unbearable pain and our family just has to watch this.

Feel completely let down that no further testing is being carried out or other suggestions as to how to help her. This is having a serious impact on her physically and mentally which worries me greatly.