Sorry for the moans guys but I'm feeling frustrated right now, and getting more so, it's so not fair that so many of all over the world have got Fibromyalgia, yet there don't seem to be any research into I finding out exactly what causes it, and the doctors don't seem to understand, I'm sure they think it's all in our heads, and it don't help when you tell who you work with all the symptoms like stiffness, aches and pains and tiredness and brain fog and they turn round with a little laugh and say well I get most of that on a daily basis grrrr. Why are there not tests on patience to see a link. I've had it for 14 years and it's now moved to my legs and when I get home from work now I sit up watching tv and within 15 mins I'm asleep sat up. God I'm 50 I'm not 80.

7 Replies

  • Always making more allowances for others lack of understanding than will be made by them about your condition will always be frustrating. Trying to change the changeable and waste no energy on that which has never changed, easier said than done I know but ask is it worth the grief the frustration brings.

    Less value on the opinions of those with no understanding helps me hope it helps you :-)

  • I know exactly what you mean littlejan, I go through phases where it just feels so unfair and I get really sad (actually it always feels that but there are times it bothers me more than others) I'm sure I'm not the only one who would love to wave a magic wand and let those people who 'have those pains too' to really feel what we feel - then they'd see. But alas, we wouldn't really wish it on anyone else, because as fibromites we know how much it affects every day and most aspects of our lives.

    Stay strong, let me share with you a quote I've often read on facebook

    "somedays I don't think I can cope with a bad day, but then I remember my success rate has always been 100%"

    *gentle hugs*

  • Hi littlejan

    I understand exactly what you mean and where you are coming from. I genuinely think if people will not listen and researchers won't research, then it is up to us to make people aware of Fibro and lobby researchers to undertake the necessary research.

    Platforms like this one can change attitudes and actions, the more people who join and shout about it the more chance we have of being heard!

    Take care

    Ken x

  • Fibro is a Syndrome, which means there are many smaller conditions making up the whole picture. Research in these cases depends on scientists in many specialities working together, and I am afraid that's rather like trying to herd cats!

    Scientists tend to only concentrate on their own interests, getting a bunch of them together to compare notes in order to look at the greater picture is very unlikely in the near future. They guard their research as avidly as a Formula 1 team guards the next generation of racing cars.

    I really appreciate your frustration, as I am sure do the majority of us here who are in pain and suffering, but I don't think we'll get any joy in the forseeable future.

  • Oh Littlejan, you should have come to the fibromyalgia conference this year. Dr. Andrew Holman of Seattle USA is doing lots of research into the cause of fibromyalgia - at the moment he does it full time - and also he listed the masses of other research that is going on particularly around the Seattle area, to find the cause, he showed how all this research links to the autonomic nervous system in some way. He has found that over two thirds of people with fibro have co-morbidity of positional cervical cord compression (PC3) and that causes pressure on the cervical cord when it is extended backwards, and the abutment of the spine against the cord causes the autonomic nervous system to dysfunction, and this gives signs of fibromyalgia. I am convinced there is some truth in this and in fact after I heard his lecture I tried to get an MRI scan of my neck in an extended position but I couldn't find anyone in UK who would do it, so I went to Dubai and had it done there, and yes, I do have it. Unfortunately getting doctors in UK to follow this up is really difficult, and I think in part this is due to the fact that many pharmaceutical companies are doing lots of research into treatment and if someone finds a cause and it can be treated without medication then they won't be able to sell their expensive medicines. Or perhaps I've just been around too long and I am just a cynic relating to drug companies, doctors and their motivations. But please do not think there is no research into the cause - there is. Love and hope the research finds the cause soon enough to make your life more comfortable. Hugs x

  • Then there's a distinction between cause and mechanism. I gather it can just come on or be triggered by trauma - like surgery, accident, other illness. It seems to have a neurological element, partly explains why anti depressants work.

    This link may or may not help

    It seems to be one of those mystery things we are learning about now we've gotten on top of the basics. It wasn't all that long ago we thought sin caused illness.

  • I'm convinced mine was triggered last October when I went into hospital for a op, well "procedure" on my lumbar spine. It was stressful, I had to be awake while the surgeon burnt away the nerve endings to my facet joints and yes I've got a compressed disc also. I strongly believe the poor quality sleep is a trigger also...........xx

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