What exactly is being done to make the right people listen and take action

[gizzie4]

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

[lcm27]

Hi, I feel the same, we disappear into this big black hole. I do ask each time I get a new drug or treatment exactly what I can expect this to do and whether this will interact with the fibro. I asked to come off of anti-depressants cos they weren't making me sleep, did nothing for my spasms and I put on loads of weight, so I went on Gabapentin instead. Lost weight, felt better and came to terms that if I'm up in the night then so be it. Like now. They seem to do a shed load of research in the States but none or little here. I'm lucky that my GP is Rheumotology based and works part time with my consultant at the hospital so he does understand a lot, but he's a jack of all trades as are all gps having said that he is good. Wouldn't it be great if all surgeries submit exactly what long term chronic illness patients suffered from to start with, what a snapshot of the country healthwise. Maybe then the government or someone would do something.

[gizzie4 in reply to lcm27]

pleased to hear that i'm not alone in thinking this way, i think there is a lack of communication between the doctors that deal with Fibromyalgia, nothing is joined up. If any length of time was spent with us to observe how it really affect us, they might understand better, instead of grouping everything into the category "oh you have a pain"

[Sarah-Jane]

I am sure there is someone doing something somewhere, but it would be nice to know who so we could offer ourselves for consultation of our symptoms, how we cope, what works and what doesn't etc. It does feel very lonely at times. Meet a new professional and have to explain it all over again and then not be believed! Now I am rambling. So for good measure I will just say I know how you feel and sign off.

Soft hugs

[Cookie72]

All I'm going to say is I agree with all of you, it makes you feel that no one cares, some of the doctors don't even know what some of the symptoms are, all you gt is be sure to be active otherwise you wil end up in that wheelchair sooner than u thnk... Sorry wasnt going to say any more, never could keep my mouth shut LOL .......gentle hugs to all...Dee x

[Ginsing]

I agree as well it is wearing to go for a Hosp meeting and know you will be asked the same things again and again but surely that is to make sure the Doc chatting to you has not missed any thing vital. I recently had a good experience with a Doctor who had actually taken the time to read my notes. This was quite and endeavour as they go back some 50 years but she was aware of all the dramatic things that have happened to me over the years. I was delighted that someone had actually gone to such lengths. The out come wasn't really helpful but I gave her three A stars for performance.

So this one was exceptional and I know many dont read our notes relying on us to fill them in (what if we forget get muddled are not good in interviews) I do wish there was a way we could climb this mountain but with Houseman released on the public with only 4 years training they still have a lot to learn from us. We need more patience

with them then they will be good with others.

I send you all love and hugs and Happy Sunday smiles xgins