Rheumatologist at support group

Hi all I went to my fibro support group yesterday and they had a rheumatologist come to give a talk. Infact he is the guy I've been seeing and who diagnosed me with fibro four years ago. What he said was pretty interesting a new medical paper has come out in Canada showing they are moving forward in proving that we are in pain lol. Wow.( I'm being a bit sarcastic). They used this new MRI scanner called an Fmri I can't remember what the f stands for. But they did various tests on healthy people and on people with fibro and it showed that we only have to be touched lightly for the pain signals to go off in our brains. But he did say don't get too excited as we are about 5 years off it still being proved. I said Why? Because we are a lot further behind here. I just don't get it,there is an epidemic of this illness in this country yet there is not much research being done. Can't the government see how much it's costing them? Let alone a bloomin cure!!! He also said its likely that it will mean we will be seen by a neurologist in the future as its a problem with the brain and the neural pathway. Anyway I will have a look and see if I can find the paper,he was very excited by it. I wasn't because 5 years sounds a long way off to me. Concerning disability benefit he said you must just persevere with them and not give up,he was disgusted with what's happening to people but its not only us it's everybody with any kind of illness.

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  • At last they are finally realising we feel much more pain than so called normal people .... I think if I didnt have fibro I would never be classed as normal but I am digressing ..... I have had 11 ops during my fibro and the pain afterwards ... !!!!! I have had confused nurses and drs and some who are just incredulous that I could be in so much pain.... So hopefully before I pop my clogs if I do have to have another op I might actually get some sympathy and be believed that yes I am in that much pain....

    Thanks for the info TM. :)

  • I had a lumpectomy recently and the body pain afterwards was incredible. Unfortunately, it was followed up by an infection in my boob which I'm still being treated for. The massive doses of ABs I've been given for the infection initially resulted in me being poleaxed means that my painkiller schedule has gone a bit off whack so it has been a double whammy for the pain. Have got it coming and going!

    I can understand the logic of being treated by neurologists in future. My current rheumy basically doesn't want to see me unless I have a particular crisis. I only see his dept for steroid shots in my knee and consequently havent seen him for nearly 18 months now!

    I liken the pain of fibro to being lightly tasered and the electricity keeping going like a film over my body. It's the best way I can describe the condition to people so they'll understand. When my beloved cuddles me on the sofa or whereever and lightly massages my neck or shoulders/arms etc, it's a double edged sword - I love the massaging but am so sore that it's also painful. I have to quickly get to a happy place in my mind and focus on his fingers. Sometimes I inadvertently screw up my face and he gets all upset because he's hurt me when he only meant to soothe me. We can't win, eh?

  • Hello Teddymum43,

    I have seen reports on the internet about the research you are explaining. The study took healthy subjects and people living with Fibromyalgia and performed a fMRI (functional MRI) on each of them.

    The results appeared to show that when each person was subjected to the same stimuli (ie pinch, pressure etc) that Fibromyalgia patients felt increased pain compared to healthy subjects. The MRI is reported to show that the part of the brain that processes pain was noted to show larger areas of stimulation on the scan results with people with Fibromyalgia compared to healthy subjects.

    Therefore, if they continue to conduct further studies showing the same results we they could soon be able to show medical evidence that we do indeed feel an increased pain experience via this type of fMRI.

    I personally hope this will limit the stigma we face daily and promote further research into Fibromyalgia.

    Thank You for the post and how interesting to have a Rhuematologist come to your support group. He/she sounds like they are Fibro Friendly and do you think they should be added to the FibroAction website in our directory, if he/she is not already.

    If you would like to email info@fibroaction.org with the Rhuematologist details we can add them to the directory for others in your area to access the information.

    All the best

    Emma

  • Wow. There does seem to be a bit more publicity now for fms. Its encouraging to know researchers are beginning to treat it as a serious condition. The more its publicised, the better it will be for us, whether they find a cure, or meds or not xx

  • Oh another thing that's come to mind is he said that the research is showing that fibro is not linked to depression as only a small percentage have fibro and depression,so ner ner ner to all the doctors that say its in our heads,in your face!

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