Haven't posted in a while!
Sat, 11/14/2009 - 12:45 | 
Chris Well, its been all go here! Apologies for not posting, have been trying to sort my life out a little.
I have never been this busy even when I was working!
More will be revealed at a later date - but suffice to say the future seems bright!
I also seem to have hit a brick wall or at least the pain barrier with posting and driving the blog. It takes a heck of a lot out of me, and sometimes I just need to sit back a little and take a rest from it.
If anyone would like to help out and possibly "guest post" some articles on here, then that would be awesome!
I am still looking for stories, especially those from carers or parents or partners of sufferers? Please consider helping out this way as it is an amazing tool to help others connect.
The stories don't have to have names attached to them, they can remain totally anonymous!
I really do think that they help others understand that might not want to take an active part in making comments or joining websites.
Pain and discomfort rages inside my back, the muscle weakness and joint stiffness is a real pain in the bum and the fatigue still beats me daily - and just about to go onto "chose and book" to sort out my appointment at Walton. I really need to get to the bottom of all this.
Went to my GP with Fibromyalgia symptoms and he dismissed me almost immediately - I don't think he wants the responsibility of diagnosing me - told me to go and see my specialist! hmmmmmmmmm Don't get me wrong, I don't want "something else" to be wrong with me - I just want it to be categorized so it can be treated.
Anyway, just booked an appointment for the 7th December at Walton - only a 17 days wait compared to the 45 day wait at Salford................ didn't give me the doctors name tho.
Tags: 
I remember the look on my GP´s face when I finally (after about 10 years of suffering from unspecified symptoms) realised that I might have fibro, and presented at her surgery armed with stuff I had printed off from the internet on FM.
Not being paranoid, but "she´s a total hypochondriac" is what she was thinking (and probably what everyone else, including my boyfriend and family were thinking by then). However, I insisted that she refer me to a specialist, to the point of displaying "threatening" behaviour (ok, that´s a bit exaggerated, heh) and that´s what she did.
5 mins with the specialist rheumatologist and I had my diagnosis.
But still... I get those *looks* all the time, even that now FM has been recognised as a "proper" illness. It´s sad that people, especially doctors, who are supposed to be there to help you (even if you *were* a hypochondriac, you still need help, because there´s obviously something wrong with you!) cannot grasp the concept that you can be ill on the inside and still look normal on the outside. Especially if you are still young, or look young.
A lot of people with cancer also look "normal", but get a person to tell you they have cancer, you´d tend to say "oh, I´m so sorry to hear that" and you´d be concerned. Fibro? "Oh, what´s that?", and after a lengthy explanation.... you get those *looks* again!
It´s not that I want sympathy, but I want people to *understand* what fibro is, and that I do have serious limitations because of it, and that I simply cannot do certain things and that I have to keep to a certain lifestyle, sleep hygiene, nutrition etc. etc. And I want people to understand that, and take me as I am, WITH my illness. But even some of my best (healthy) friends just don´t, or don´t want to, understand.
I hate to even think it, but sometimes I wish I had cancer instead of fibro, because at least people would BELIEVE that I´m ill. Also, people with (terminal) cancer are "released" from their pain and suffering, usually (but not always) after a short while, while people with fibro can only look forward to the rest of their life in pain, and suffering from weakness and fatigue. I don´t know what´s worse...
But I´ll shut up now. I am more a positive person nowadays than all the above appears to make me out as! Taking one day at a time is the best way to cope with this, and the positive thinking that tomorrow will be a *good* day, or a *better* day pain-wise. And if not? I just pop a pill and think of the next day. ;)
Hi
Thank you for commenting on the post, and especially for sharing your experience with Fibromyalgia. Unfortunately it does seem to be a common attitude amongst GP's that because they really cannot identify a cause, then they are sceptical about your symptoms - much the same as early signs of Chiari and Syringomyelia.
There definitely seems to be a common ground that if your GP doesn't understand something, then it doesn't really exist -only in the mind of the patient - there then lies the danger of us going for years without proper diagnosis or treatment as we tend to trust our GP's blindly.
I am not sure that I would necessarily agree with some of the comments about Cancer - but do truly understand where you are coming from with them ;)
I really do think that being positive is a strong attitude to take, certainly helps me through each day. Yes, the pain and discomfort is agonising at times, and yes the fatigue does have all kinds of physical and mental side effects - sometimes it just isn't enough to know that there are people out there that are in a far worse situation - but then I look at my kids and think - yeah, there is hope and there is something to battle forward for.
It's bad enough that we play mind games with ourselves over all of this - we don't need GP's adding to it ;)
TC and thank you again.