Hi, i would like to know how much information is actually gathered from the horses mouth so to speak (the people who suffer with this horrible condition), We all get to tell our docs or the DWP about the symptoms and problems we face with fibro, but how often is individual information collected and used to find the answers we all desperately need. Yes i have filled out surveys rating my pain or how i am feeling, but i do not feel that it alows you to say exactly what is going on with the fibro and is not the same as describing each of the different symptoms that crop up, and nobody to my knowledge has taken any notes of this from me which have been passed on to anyone that it might be useful to for research. Yes my doc is aware of how fibro affects me, but the information i give him, goes no further than his computer. I just feel that if nobody has my description of the fibro symptoms i get, then it is unlikely they will have anyone elses and therefore cannot look into it thoroughly. This may sound mixed up and silly and i know that there is a lot of research being carried out, but this is how i see it and it seems that it is just assumed that everyone with fibro has the same problem or is a similar sort of person. For example, i was referred to a pain clinic for lignocaine infusion, i turned up, they did not ask me how fibro affects me, they knew nothing about me and just stuck me on a drip, then sent me home. i also think that the best way to really look at how this affect people would be for someone to spend more than just a few minutes with someone who has this, so they can observe how it affects them. Sorry for ranting, hope you have all had a good day
Last edited by Mdaisy
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